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    #193665 06/06/14 10:18 AM
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    Man, that word "reasonable" here really burns my britches.

    Haven't these people ever heard of Letter to Zirkel??

    Sheesh.



    As a side note, it is MIND-boggling how ugly school staffers, teachers, and even other parents can be toward children like this one.

    And so much for "hidden" disability, eh? Nothing like calling that one out by putting a child into a special "disability" seating arrangement when parents and the child's physician ask for more appropriate risk management. Contact-sensitive kids are a real challenge for schools-- everyone knows that. The problem is when schools choose to behave like petulant children themselves over it. These parents and this child certainly didn't choose to have this medical condition to live with, and what possible motivation could they have for exaggerating it?? I realize that most people know at least one person who has self-diagnosed or made-up food allergies, but a kid wearing a medic-alert bracelet who can explain what anaphylaxis is and how to use an epinephrine autoinjector.... probably is not exaggerating anything.





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    Part of the problem is that there are those folks who exaggerate their kid's food allergies. I know folks who have very serious food allergies, and the exaggerating people are doing a disservice to them.

    My youngest went to a day care with all sorts of allergy/"Don't bring in this food" signs. Nut, eggs, dairy, etc. - the list went on and on. And each parent swore that their kid's allergy was severe.

    What ends up happening is a danger to the truly allergic child. I saw products that contained the allergy trigger items in that classroom (because I read the labels), and I saw kids eating them right next to the kid that would have a life-threatening reaction if they were in the same room with the food (according to Mom). So what happens is someone like me, with kids that don't have allergies, sees stuff like that going on and starts ignoring the signs. My youngest will barely eat anything anyway, and the day care is limiting her food selections to items she won't eat, so I figure it won't hurt to add this in her lunch...and there is the problem.

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    I am not sure about parents "exaggerating" their child's food allergy. I have never experienced that but I "hear about" it a lot 2nd-hand from resentful non-allergic parents. You may see it that way, but you have no way of knowing people are exaggerating unless they admit it, and it is very likely not the case. The problem is the allergy can worsen with each reaction. When my son was first exposed to peanuts he got excema, Later he threw up and became congested, the next time his face all swelled and he got hives as well as congestion. The last few times he filled with thick mucus and his throat closed. While he is not allergic (yet) to the smell he gets extremely anxious when he smells peanuts b/c he has almost died - more than once now. For most of us, each time the reaction gets worse and worse and doctors warn of this. In my experience, non-allergic parents have this huge tendency to "exaggerate" how limited they are that they can't bring in "ANYTHING" to eat b/c "everyone" has an allergy. I find that not to be the case at all. Usually it's just my kid banned to a table by himself b/c it's so inconvenient for kids to go 6 hours without peanut butter. Occasionally, there is one or two other kids from a total of 5 other classes. I just have never encountered these 'extreme' cases where every kid has an allergy and the poor non-allergic kids have "nothing" to eat. And I have two children in the public school system - one who is fatally food allergic and one who is not. MANY parents do not respect my fatally allergic child. The school does lunch bunches and class lunch with the principal and each year, without fail now, several parents send in peanut butter anyway (even though they were asked not to because there is a fatal allergy... So who gets banned from lunch? The children who were asked to refrain from peanut butter this one day? No. My kid does. I have people say the nasty things right to my face about it too.

    Last edited by Irena; 06/06/14 11:57 AM.
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    Oh and we don't "swear" the allergy is severe here. We have medical proof of it - in blood tests and skin tests. And of course, hospital records of severe physical symptoms.

    In my younger son's classes, son who is not allergic to anything, I always ask are there any allergies because I will not send those foods in. One teacher said to me - "oh, don't worry about it - that's not fair to your child." Not knowing that I had another child who was fatally allergic and so I am very concerned about the welfare of all the kids not just worrying about convenience form my non-allergic one. Boy was she shocked when I responded that "what wouldn't be fair would be my putting another child's LIFE at risk because I refused to have my son refrain from eating a dangerous food for the few hours he was at preschool. He loves yogurt, for example, but he can certainly go a few hours without it and we can certainly wait to eat it at home if it's going to possibly kill another child. Really."

    Last edited by Irena; 06/06/14 11:59 AM.
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    Yes. Most parents that I know who have kids with life-threatening food allergies (and definitely those like us who live with contact/aerosol reactive kids) have the same exact thoughts about that, believe it or not. I know plenty of people that I'm pretty sure are exaggerating, and a few that I suspect are out-and-out lying. I can definitely see why parents who don't live with food allergies can get the impression that it's completely fabricated.


    That's understandable from other parents. Not so much when schools ignore medical evidence that parents have provided, because they... just know that we're all fakers out to make our special snowflakes just the most precious things ever, or something. Or maybe we're all suffering from MBP. We like the attention, right? Yeah-- sure. That's why we don't want our kids to be called out in front of their peers... oh, oops-- guess that part doesn't fit. smirk

    I'm particularly touchy about this today given that a person who sat in on my daughter's 504 meetings for a year-- a year in which national legal input was required over accommodations that I insisted were inappropriate and illegal, not to mention dangerous (I was right, and THEIR lawyers said so, as did OCR)-- was still capable of taking a nasty pot-shot at MY kid over perceived over-anxiousness re: her food allergy. So it really didn't matter whether or not we can prove that some risks are real enough that "anxiety" over them is completely warranted-- some teachers, administrators, and other adults are still totally willing to shame kids for not being... less inconvenient, I guess. That's just incredibly sad. I'm pretty sure that it would be unthinkable for a teacher to say "Well, we would be having a fun end-of-year PARTY at the CLIMBING CENTER... if some students weren't insisting on sitting in wheelchairs, I mean..."



    The in-your-face humiliation/isolation/discrimination faced by kids like this can be very extreme. When teachers and administrators are dismissive or rolling their eyes, etc. it creates an environment which is simply hostile.

    That's not even considering the actual physical danger to them-- which is also exponentially higher in an environment in which this kind of allergy is treated as a joke or communicated to others as an unecessary pain in the neck (which I'm gathering is what has been communicated to NotSoGifted via school staff).

    I've seen schools do some pretty outrageous things in their dealings with parents and food allergic kids. One district was even so determined to eject a student that they insisted that they would not allow a 504 plan to be written unless the child "proved" anaphylaxis potential with a particular allergen... with a medically-supervised deliberate ingestion to elicit a life-threatening allergic reaction. Yes, that's right. I don't know of a single reputable allergist that WOULD have done it, and the family wound up homeschooling. (HUGE surprise, I am sure.) Another child was given a garden vegetable while classmates (all early elementary kids) ate gorgeous, elaborately decorated bakery cupcakes. My own daughter was once offered a grubby BEAD fished from the bottom of a teacher's purse as a last-minute "substitution" at the end of a one-hour class (because she couldn't have the cookies). Yes, really. This is incomprehensibly cruel. I've seen and heard things personally that I still have trouble fully wrapping my head around because they are so jarring or unexpected. My own child was "offered" the accommodation of sitting in a closet or office-- or maybe out in the parking lot in our car-- so that coaches and teammates could eat at will on the sidelines during competitions. Of course, even that was not a real offer-- they quit returning our calls and e-mails entirely. Yes, their national legal counsel MOCKED my child in an e-mail that I still have a copy of. NO joke.


    In one of the most jaw-dropping moments that I have personally experienced, an extra-curricular workshop teacher was going to EAT my child's allergen (even after I'd carefully communicated with organizers ahead of time), then was willing to "forgo eating lunch" (making my child feel HORRIBLY GUILTY)... and finally, "helpfully" telling us about how we could-- you know, if we didn't want to keep being such incredible downers everywhere we went, I guess-- CURE MY CHILD'S ALLERGIES WITH CHIROPRACTIC. With an audience of ten other 6-9yo children, and 4 to 6 other parents. {sigh} No, as a matter of fact, I did NOT 'drop-and-go' with that particular teacher, and yes, I did have to have the "why we love you even though we haven't cured your allergies" conversation with my child, who LUCKILY, being PG, immediately saw that Ms. HippyDippy there was probably talking out of a position of profound ignorance relative to her specialist physician, who is one of the most respected on this coast with respect to food allergies, anaphylaxis, and immunotherapy, and trained with one of the top three researchers in the world.

    Chip on our shoulders?

    You BET.

    Honestly, food-creep is one of the single biggest problems in my life and it's potentially THE biggest one in my DD's. Our culture is awash in food and eating-- everywhere, all.the.time. Signage prohibiting food and beverages is IGNORED. My 6yo loved MoMA much better than Disneyland. She felt safe at the museum. sick



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    Good Lord, what is wrong with people? Can they seriously not avoid some fairly unnecessary foods in their child's diet for 6 hours to avoid a potentially fatal reaction in a classmate? That's a meal and a snack or two.

    My husband is in the "allergies unreasonably trespass on the right of the non-allergic to eat food X ad libitum" camp. Excuse me, but in what parallel universe is the right to eat peanuts more important than the right to life?

    I grew up in high school with two friends with life threatening allergies: peanut and sesame. I saw first hand the needless threats to their safety on a daily basis. Never would I want that for my child, or someone else's.

    What are most common severe allergies anyway--tree nuts, dairy, and wheat? IIRC, dairy and wheat allergies are usually less common as airborne allergies, which lowers the required degree of accommodations. If you can't come up with an alternate menu for a meal and 2 snacks for your child, maybe parents need to band together to support an allergen free cafeteria at the school, because the remaining choices are plentiful. Let's consider for a moment the remaining available menu items based on the assumption that all the foods I listed above are off-limits: meats, fish, fruits, vegetables, legumes, most oils and fats, most grains (rice, bulgur, quinoa, amaranth, etc.). In my diet, that would mean I'd substitute some avocado for nuts in a salad at lunch. In the other 8 or 9 waking hours of my day, I'd eat dairy, nuts, and bread.

    I can think of three friends who are fashionably on an allergen-free/restricted diet. One is a "celiac" who eschewed gluten-free pancakes I made at a brunch in favour of farinaceous ones. Another is "lactose intolerant" but ordered a grilled cheese the last time we went out for lunch. The third is "vegetarian", but ate steak at my wedding despite being offered the vegetarian meal of her choice. This kind of ridiculous posing undermines the perceived legitimacy of real allergies.


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    Most school administrators and teachers default to one of two positions when you ask for accommodations related to a life-threatening food allergy:

    a) intimidation via name-and-shame-- they make SURE that everyone else knows who you are, and wash their hands of responsibility-- forcing you to deal with other parents and defend yourself with people who may know absolutely NOTHING about you-- as though they are entitled to, which is just bizarre, or

    b) accommodations that PUNISH the child. "Here, sit in the corner," or "go to the hall so we can do this art project," or "you can't go on this field trip," or "go to the principal's office."


    For people who supposedly love children, these kinds of responses are mind-boggling.


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    Irena, I am sorry to hear that other parents and teachers are so unsupportive of your child with the allergy. Our daycare is nut-free, and although we love PB and nuts, we have never minded that restriction. For us, it is same as you - we would never want to be in a situation where we would knowingly put another child's life at risk.

    I hear of parents that are so callous about a child's potentially life-threatening allergies, and I really don't understand it. It is definitely not going to kill my children if they have to refrain from some foods during the day.

    It may be simply because my mother made it clear when we were little that it is not a right that we can eat whatever we want whenever - one of my sisters' friends had serious allergy to milk and another had so many food restrictions for medical reasons (apparently an older sibling of that child either died or came close to dying hence they discovered the same medical conditions in the younger siblings) and my mother made attempts to ensure if they were at our house that they would be able to eat with everyone else, even if it meant some of our favorites were unavailable.

    I even remember her going out to buy new dishes and pots and making sure to get the menu approved when they had invited a few local friends for dinner and she found out they followed a kosher diet. It is not same as allergies, but it did really hit home that just because I love certain foods and combinations does not mean I should assume that my enjoyment of those foods trumps everything else - be it medical reasons or cultural reasons.

    I still really don't understand why it is so hard to respect the fact that there are fatal allergies and just refrain for few hours.

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    On a more unrelated note, what is with the crap food parade educators in the US seem to be throwing? You'd think they were part of the Duncan Hines market research team. Reward kids with an education and interesting experiences or--at least--tasty healthy food. These are supposed to be schools, not bakeries!

    Last edited by aquinas; 06/06/14 12:37 PM.

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    There's a mom at DD's school who had to protest the school's actions because she thought the school was being ridiculously over-protective. Her DS's allergy (to cinnamon?) is fairly mild, yet the school nurse sent out memos to all the teachers putting limits on what he could eat/do, there were emergency instructions, and she made a huge deal out of it. I found this strange considering my DS went to school in kindergarten with a fractured skull, neck brace, and eye patch and they were perfectly fine with him being unattended, walking across wet floors, ice, etc.

    I do feel for parents/kids with severe allergies and them not being taken seriously. There do seem to be a lot parents that "cry wolf" or make a big deal out of allergies that are not actually severe, and that takes away from the actual life-threatening cases that should be taken seriously. It's probably hard for the school to sort out which allergies they should be worried about, and which they shouldn't be worried about. Maybe the parents are actually worried that the allergy will cause a severe reaction, and are just being over-protective, rather than it being an attention-getting maneuver. But in cases where a child HAS had a severe reaction already, it should be obvious to everyone.

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    The other thing is that they lump things like peanuts in with tree nuts. SO, my child's class is SUPPOSE to be "NUT Free" right? But nuts are not actually what my child is allergic to... peanuts are not tree-nuts (they are actually not nuts at all, they are legumes). So, at some point a parent may see my son eating products containing "nuts" and assume I am lying or exaggerating but obviously I am not because my son is fatally allergic to peanuts (and lentils) but is fine with all kinds of tree nuts. It may be mere ignorance as to the child's allergy by non-related resentful parents leading them to say "Oh I saw her DS eating nuts - she is lying about his being allergic!"

    Quite honestly, life with a food allergy is very hard. Parenting a child with a food allergy is so flipping stressful and hard. I know there may be a few weirdos here and there ,like in any population, that lie but I am really skeptical it is to huge extent. The abuse and nasty things said to the child and the parents is NOT FUN or special or pleasant. The attention quite honestly is not nice at all. Maybe it's geographical, but there ain't nobody lying about it here in my neck of the woods so much so that kids with valid allergies are putting themselves at risk to "fit in" and not be banished from lunch tables and lunch bunches (and I do KNOW kids personally who do that). I think it would be the rare individual that would truly lie about here. Seriously. It's a nasty experience.

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    I just have to say that these horrible stories blow my mind. I can't even imagine someone actually having the nerve to say/write/do those things.

    All of the schools and daycares that my kids have been in are peanut free. I don't think there are any in our city that aren't peanut free. A couple years the class also banned sesame, whole egg and tree nuts for a kid. There are notes several times a year about not sending in food for birthday's etc. Every birthday party invite I've received has had a note about notifying the host about any allergies so they could accommodate. I heard a couple parents grumble going into JK about what do feed poor picky Johnny/Suzy but once they discovered Wow Butter they were good to go and I haven't heard anyone complain since. In the class are forms with the child's picture, list of allergies, protocol, etc taped to the wall. The teachers all have extra epi pens in their desk. My kids know not to share food - it is drilled into them.

    I'm sure there are still some horror stories but the law is on the side of the kids where I live -
    http://www.anaphylaxis.ca/en/resources/sabrinas_law.html
    Unfortunately it took something tragic to make it that way.

    Last edited by chay; 06/06/14 12:48 PM.
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    Originally Posted by aquinas
    I can think of three friends who are fashionably on an allergen-free/restricted diet. One is a "celiac" who eschewed gluten-free pancakes I made at a brunch in favour of farinaceous ones. Another is "lactose intolerant" but ordered a grilled cheese the last time we went out for lunch. The third is "vegetarian", but ate steak at my wedding despite being offered the vegetarian meal of her choice. This kind of ridiculous posing undermines the perceived legitimacy of real allergies.

    Actually, those are not allergies. Celiacs cheat all the time - they get sick but it would take quite awhile to die. Unlike an allergy, where my sons would have about 15 minutes. We have a friend who is celiac (my husband is a celiac but he doesn't cheat) , we can tell when he has cheated - he gets big rashes... Lactose intolerants cheat too - they don't die (well eventually they could but it'd take a lONG while). They get sick. I don't think they take away anything from those with allergies. They are a completely different medical group with a completely different issue.

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    Originally Posted by blackcat
    There's a mom at DD's school who had to protest the school's actions because she thought the school was being ridiculously over-protective. Her DS's allergy (to cinnamon?) is fairly mild, yet the school nurse sent out memos to all the teachers putting limits on what he could eat/do, there were emergency instructions, and she made a huge deal out of it. I found this strange

    I will just bet that SHE found it pretty strange, too, fwiw.

    This is the kind of passive-aggressive nonsense that goes on around food allergies, honestly. There's a reason why 504 evaluation is the most appropriate tool to begin with. Because, hel-LO? INDIVIDUAL accommodations. Not one-size-fits-most.

    Sounds to me as though this parent was being pummeled with "policy states that" when she had the gall (!) to bring it up at all and make it the "problem" of the school.

    I'm a bit cynical about this kind of thing at this point, however.



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    As for the "over-protectiveness" of "mild allergies" Like I said earlier, reactions get worse with each exposure. Trust me, you do not want to see your child go into anaphylaxis shock before you start being protective. Literally having your throat close at 5 and coming that close to death is a horrible experience for a child. And, the fact is that your child really really could die. Like, really. So doctors tell people with even mild food allergies to stay away from the food because you do not know when the anaphylaxis reaction may come and in our experience - it can definitely come. The anxiety that results form a child having to go through before being protected is terrible. I do not blame parents at all for protecting their child.

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    totally agree with all pp's. Our kindy is nut free, being vegetarian it can be a pain but it's just the way things are, they are banned for a good reason and that's that. I don't think we even have any nut free kids there.

    DD has a severe intolerance which can be tricky - it causes a paralysed intestine sort of thing so any consumption has bad effects, but too much or repeated small amounts causes her to not grow! I've found it hard to get people to take it seriously because after all it's not an allergy and people hear intolerance and they thing neurotic mother. I can't imagine how difficult it must be for parents to deal with a real allergy and not be taken seriously.

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    Also how the heck do other parents know "the allergy is mild"??? Seriously how would you know that? I have had one mom tell me her child's peanut allergy seemed mild (even though the doc told her otherwise) because said child only broke into hives from the food ... Hives can quickly turn into anaphylaxis, I can ttest to that!

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    What I've learned is that there are two separate considerations that determine how one manages a food allergy--

    1. sensitivity (that is, what kind of dose is required to cause a reaction)-- some people need to actually eat a bit of an allergen, or something that contains significant amounts of it-- and others, in the minority, live at the other extreme and can't (really) even be AROUND someone handling/eating some allergens

    and

    2. severity-- which, as Irena notes, can vary significantly even for an individual, and from day to day.


    The problem is that threshold dosing can also fluctuate somewhat depending on the person's immune status otherwise. An exposure that my DD might be fine with in October could send her to the hospital in May during the height of grass pollen season. Hormonal shifts, asthma status, etc. all make a difference.

    It's very complicated.


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    Food allergies are complicated. I mean, unless my allergist is lying to me, not all positive tests have to be regarded as Code Red. DS just tested mildly positive to a couple of things and we've been asked NOT to eliminate them from his diet until further consultation. I tested mildly positive to a bunch of stuff, and after consultation I only eliminated one. I don't know if this is the case or not, but to me it seems possible that some people might have received these same test results and become very concerned about a reaction? But this may not be necessary in all cases since testing is known to produce false positives. FTR, I was tested due to migraines, which can have many causes. If one is testing due to hives immediately after eating, etc, I would think the recommended actions are different.

    The other thing is that if you have a sensitivity (IgG), which frankly, many people I know do call that an allergy, that's really different from an IgE allergy, which is the type that can be immediately dangerous. I know a parent of a child with sensitivities and the school treats it like an IgE allergy, which they need not, according even to the parent.

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    Originally Posted by Irena
    Originally Posted by aquinas
    I can think of three friends who are fashionably on an allergen-free/restricted diet. One is a "celiac" who eschewed gluten-free pancakes I made at a brunch in favour of farinaceous ones. Another is "lactose intolerant" but ordered a grilled cheese the last time we went out for lunch. The third is "vegetarian", but ate steak at my wedding despite being offered the vegetarian meal of her choice. This kind of ridiculous posing undermines the perceived legitimacy of real allergies.

    Actually, those are not allergies. Celiacs cheat all the time - they get sick but it would take quite awhile to die. Unlike an allergy, where my sons would have about 15 minutes. We have a friend who is celiac (my husband is a celiac but he doesn't cheat) , we can tell when he has cheated - he gets big rashes... Lactose intolerants cheat too - they don't die (well eventually they could but it'd take a lONG while). They get sick. I don't think they take away anything from those with allergies. They are a completely different medical group with a completely different issue.

    Great. I was just trying to be supportive and suggest that non-urgent dietary issues from a group standpoint are crowding out the mindshare of those with urgent allergic needs.


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    Originally Posted by aquinas
    On a more unrelated note, what is with the crap food parade educators in the US seem to be throwing? You'd think they were part of the Duncan Hines market research team. Reward kids with an education and interesting experiences or--at least--tasty healthy food. These are supposed to be schools, not bakeries!

    LOL. This is the mindset of my friends from Europe... Oh the bashing I hear "Can you Americans do ANYTHING without eating? sweets and snacks?" She said she has never seen so much food in schools before... storytime even needs a "snack."

    Although Duncan Hines makes a damn good gluten free easy bake mix - so we are a fan of the company here!

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    Originally Posted by aquinas
    Great. I was just trying to be supportive and suggest that non-urgent dietary issues from a group standpoint are crowding out the mindshare of those with urgent allergic needs.

    To a certain extent these people actually kind -of help... For example, back when my DH first was diagnosed and had to become gluten-free it wasn't "trendy" - very difficult. Now? Totally trendy! As a result? I popped over to my local grocery store and bought a gluten free cake for my husband's birthday that was great. I think it cost $10 I couldn't have done that years ago.... Years ago I would have gone to a special bakery, 45minutes away and the cake would have at least $35.00. Most restaurants now are fully aware and have a menu or can accommodate gluten-free... Just a few years ago? Not the case at all. So, in a sense, they contribute to society by motivating companies to respond to the demand for more choice.

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    Exactly, ultramarina. False positives are a huge problem diagnostically.

    The other thing that non-allergic families really ought to bear in mind (and WOW, do I wish everyone knew this ONE thing, if they know NOTHING else):

    Epinephrine is the ONLY thing that you can do. It's not a get-out-of-death-free card. You can do everything right and STILL die if you anaphylax. That is the thing that even most parents of food allergic kids don't really want to think about. Sure, we carry epinephrine everywhere, practice and plan to use it, and educate ourselves and others about doing so... but the bottom line is that it's kind of Russian Roulette, flirting with allergen exposure. Epinephrine MIGHT help save your life, and it's certainly the best that anyone can do outside of an emergency department, but it's nothing like a guarantee. At all.

    Natalie Giorgi's death is highly instructive that way. People (like my DD) who have a history of very severe, very RAPID anaphylaxis, very low eliciting doses, and/or very unusual presentations (cardiovascular symptoms without cutaneous ones, for example) may make their risk of fatal outcomes unspeakably high. So yeah-- we are VERY aggressive about avoidance, because "treatment" doesn't seem so promising in her case in particular. "Recognition" that we're dealing with anaphylaxis (and not another illness, not just anxiety, etc.) is not even all that good in our situation in particular.

    There IS no situation in which we can "rule out" an allergic reaction. I say that even though our home has been free of the most potent of those food allergens for the past fourteen years. We estimate that the threshold dose needed for some of her food allergens is likely to be less than 10mg. On an average day.

    If I had a nickel for every time I've been asked why I haven't just "taught my kid what she can't eat," though, I'd be a very wealthy woman. {sigh}

    I've often been tempted to respond with "Because it was far more valuable for her to learn that other people can't be trusted, but that she shouldn't take it personally-- just don't take food from anyone, no matter what they say." smirk



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    "The child ... had no history of such a severe reaction. …"

    THREE Epi pens

    Gives me the shivers. frown

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    "We tell people that their last reaction is not an indication of their next reaction. Don't think because you have not had a severe reaction that you can't have one."

    Read more here: http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html#storylink=cpy

    This is why I am so annoyed at the "moms are being over-protective" of their child's "mild" allergy. If your child has an allergy, other parents can not have any idea if it's mild one or not and how long it is going to stay mild... other parents just can not know that and making that assumption and using it be resentful of parents seeking to keep their child from getting sick, going onto shock and/or dying is ignorance. Every time my son reacts it is different and it is worse. I was never told the allergy was mild though (after blood and skin testing) - I have been told it is getting worse (after blood and skin testing).

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    Hi everyone - since this thread isn't really related to gifted education, I will be closing it shortly. Just wanted to give you the opportunity to post any last thoughts on the topic before I do so.

    Thank you!
    Mark

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    While with a fussy eater banning foods can be annoying I am usually just grateful that my kids are not allergic to anything strand appear to have avoided my severe asthma. Next time you put on strong perfume think twice.

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    Hi Mark,

    I'm going to politely disagree with you. Although education about allergies isn't the same as education about physics, it's still an important topic that everyone, gifted kids included, need to learn about.

    The lack of understanding about allergies also parallels lack of understanding about giftedness --- people can't understand it and so tend to dismiss it.

    Just my opinion.


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    I, too, respectfully must disagree-- the addition of a second E-- and believe me, this one is a DOOZY since you have people who lack any real understanding of the nature of the disability, paired with demonstrations of the disability being life-threatening-- well, this makes finding appropriate educational opportunity for HG+ children with food allergies nearly impossible.


    So we can talk about dysgraphia or ADD... but... not medical diagnoses that lead to a 2e status?


    frown That seems rather arbitrary, I must say.

    I must also say that it's been inherently "related" to gifted education options, in our experience. This is the reason why summer institutes like THINK have been completely off limits to my child. This is a real condition and it has real impact on gifted children who already have pretty sharply different needs from their peers. Add in additional needs that dovetail with gifted ones, and the challenges rise exponentially, just as they do for anyone else with a 2e child.

    THIS is the reason why my child cannot live in a dorm setting for college, as if only being 15 at the time wouldn't be reason enough, I mean... but it also means incredible sacrifices if she were to attend an elite institution-- we WOULD have to set up a household so that she could be a commuting student who "lives at home" with my DH or myself or both of us.


    It is also flatly incredible to me what College Board put us through to get accommodations for testing, what public schools have been willing to put us through for quite basic accommodations, and absolutely ASTONISHING in the extreme how accommodating and understanding our local flagship university has been by comparison with that. Blows my mind in a HUGE way to think that my school district thought that my five year old "needed to learn to live in the real world" whereas the university seems to think that those SAME accommodations are completely reasonable and minimal for eighteen year olds.



    I'd ask you to reconsider, Mark.

    There IS no place to discuss 2e issues, as often as not. Disability communities are not generally places to discuss the kinds of problems that HG+ children have with educational settings.


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    Originally Posted by HowlerKarma
    People (like my DD) who have a history of very severe, very RAPID anaphylaxis, very low eliciting doses, and/or very unusual presentations (cardiovascular symptoms without cutaneous ones, for example) may make their risk of fatal outcomes unspeakably high. So yeah-- we are VERY aggressive about avoidance, because "treatment" doesn't seem so promising in her case in particular. "Recognition" that we're dealing with anaphylaxis (and not another illness, not just anxiety, etc.) is not even all that good in our situation in particular.

    I really appreciate this.
    My son had an anaphylactic reaction to cashews in our house at age 5. We'd known about his dairy allergy since he was 3 months. Thankfully we had Epi-pens. We saw no hives, no skin symptoms, and were on the way to the ER just to hang out & just in case when I had to inject him with the Epi. I'm so grateful I practiced with the trainer.

    His allergies are why we started homeschooling and why we continued through some rough times.

    I'm not comfortable with him getting on a plane (don't know how safe it would be) and so that's also why we don't look at going out to Reno for the meet-ups.

    I absolutely think food allergies are of huge import to gifted support and also ask that the thread not be locked.

    He's about to do a week's day classes at a local university through Duke TiP. I'll be sending his lunch in and worrying about his health daily. If it weren't for the allergies, he could do overnight camps.

    And we had an issue where I was buying shampoo last week and one of the ingredients was nut oil. Didn't buy that one.
    I also hated when milk soap was out and about a lot as well when he was really little.

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    DanaLyn, my DD did an internship last summer on a local campus-- we were very nervous, but she wound up doing just fine. I packed her funky bento lunches daily, and she navigated the campus without any difficulty.

    It was a great preview for what college will be like for her next year. I'm so glad that it worked well, because it was a huge worry.



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    He's only 11, so we've got some time to figure it out.
    It's good to hear how that worked for you.
    It's also great to feel a bit less alone.
    You've captured the terror very well!!

    My husband is taking him to a week-long camp with my parents next week. They did that last year and he had fun. I'm just always scared and trying to let him grow up and not limit him too much.

    It's tough!

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    I'd also ask that the thread be kept open. As someone pursuing start-up of a school, I find it valuable to hear how administrators can create a 2E inclusive environment, be it for hidden or visible disabilities.


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    Originally Posted by blackcat
    There do seem to be a lot parents that "cry wolf" or make a big deal out of allergies that are not actually severe, and that takes away from the actual life-threatening cases that should be taken seriously. It's probably hard for the school to sort out which allergies they should be worried about, and which they shouldn't be worried about. Maybe the parents are actually worried that the allergy will cause a severe reaction, and are just being over-protective, rather than it being an attention-getting maneuver. But in cases where a child HAS had a severe reaction already, it should be obvious to everyone.

    I probably shouldn't post a fly-by like this (I'm in a hurry, haven't read the full list of replies, and don't have time to fully explain myself) but here goes - just one thing I want to put out there at the moment - I'm the mom of a child with severe multiple food allergies who's experienced anaphylaxis and putting her in school, dealing with the allergies in school, dealing with school staff etc - I can't in a million years imagine that there is a statistically significant # of parents out there who are "crying wolf" over allergies. If a parent says there child is allergic, believe them. If the school has identified a child as having a food allergy, trust that schools require *intense* documentation and proof of that allergy from medical drs (at least our school district does). Maybe you'll run across one or two families who are exaggerating but the risk of thinking that a parent is crying wolf just isn't worth it!

    Also, one tiny point here too - a child doesn't have to have had a previous anaphylactic reaction to be in danger of having one in the future - really it *could* happen to anyone - with or without a history of food allergy - but for a child who's been confirmed as having food allergies, please don't assume that they aren't at risk of a severe anaphylactic reaction just because they haven't already experience anaphylaxis.

    OK - I realize that some people will read this and think I sound like a crazy lunatic parent crying wolf... so I will step back off my soapbox for now smile And blackcat, please know I wasn't picking on you or e-shouting at you if it sounds like that - I wasn't! I respect you totally smile Just wanted to put out a thought from another food-allergy mom smile

    I'll return later to read the full thread. Thanks for posting the link OP.

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    Originally Posted by polarbear
    Originally Posted by blackcat
    There do seem to be a lot parents that "cry wolf" or make a big deal out of allergies that are not actually severe, and that takes away from the actual life-threatening cases that should be taken seriously. It's probably hard for the school to sort out which allergies they should be worried about, and which they shouldn't be worried about. Maybe the parents are actually worried that the allergy will cause a severe reaction, and are just being over-protective, rather than it being an attention-getting maneuver. But in cases where a child HAS had a severe reaction already, it should be obvious to everyone.

    I probably shouldn't post a fly-by like this (I'm in a hurry, haven't read the full list of replies, and don't have time to fully explain myself) but here goes - just one thing I want to put out there at the moment - I'm the mom of a child with severe multiple food allergies who's experienced anaphylaxis and putting her in school, dealing with the allergies in school, dealing with school staff etc - I can't in a million years imagine that there is a statistically significant # of parents out there who are "crying wolf" over allergies. If a parent says there child is allergic, believe them. If the school has identified a child as having a food allergy, trust that schools require *intense* documentation and proof of that allergy from medical drs (at least our school district does). Maybe you'll run across one or two families who are exaggerating but the risk of thinking that a parent is crying wolf just isn't worth it!

    Also, one tiny point here too - a child doesn't have to have had a previous anaphylactic reaction to be in danger of having one in the future - really it *could* happen to anyone - with or without a history of food allergy - but for a child who's been confirmed as having food allergies, please don't assume that they aren't at risk of a severe anaphylactic reaction just because they haven't already experience anaphylaxis.

    OK - I realize that some people will read this and think I sound like a crazy lunatic parent crying wolf... so I will step back off my soapbox for now smile And blackcat, please know I wasn't picking on you or e-shouting at you if it sounds like that - I wasn't! I respect you totally smile Just wanted to put out a thought from another food-allergy mom smile

    I'll return later to read the full thread. Thanks for posting the link OP.

    polarbear

    I understand your point, but do think that a lot of people blow it out of proportion. And it also depends on what food you are talking about. How many people die each year from cinnamon allergies, for example? Each year in the U.S. about 150 people die from an allergy which isn't to be taken lightly, but it's not a high number at all. I supposedly have an allergy to strawberries according to skin testing but have never had a noticeable reaction to strawberries. So I keep eating them. And whenever a medical professional asks me if I have allergies, I say "no". I'm supposedly "highly allergic" to grass, trees, dust mites, mold and all kinds of other things, but I have no allergy symptoms other than breaking out into hives at random times. Another person might worry and stress about the testing or hives and alert everyone about it, causing other people to be careful with strawberries around them. I think that would be an overreaction, but I guess it's a matter of perspective. I'm also skeptical that allergy testing is even that accurate, and therefore all these very minor allergies that are very low-risk take away from the actual severe, high-risk ones that should be taken very seriously. If someone has had a bad reaction in the past, or if it involves certain foods like nuts, then obviously it's high-risk and everyone needs to be careful. I do understand that if there is a suspected allergy that modifications at school should be made even if it's minor--for instance asking parents to check food labels if they are bringing in food to share with the other kids. But sometimes it goes way beyond what is reasonable for the situation. Like our school's reaction to the kid with the cinnamon allergy. Even his mom thought it was going way too far.

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    I will go on record saying that it this particular disability DOES affect my gifted child's education. It is a real disability, just as ADHD and some of the other "hidden" disabilities. It is recognized as such by the federal government, and children with food allergies can get 504 plans in order to provide necessary accommodations.

    It is difficult to concentrate on learning if students are teasing you with food containing your allergen, or your teacher constantly "forgets" to tell you that you can get your special treat while the rest of the class has cupcakes. If you are a gifted kid with food allergies, it is ONE more thing that makes you different. Not being included is tough on little kids, and being "different" in multiple ways is even harder.

    It is also difficult to concentrate on learning after experiencing an anaphylactic reaction, once you realize that you could actually DIE from it. Especially if you must spend your days in the cafeteria with peers eating PB&J sandwiches and food being consumed constantly in your classroom around you.

    Last year my son's Kindergarten teacher was NOT good with handling his allergies, telling people to follow the peanut-free classroom rule, or remembering to get his "special" treat from her in-class freezer. He often had to eat pretzels while everyone else had cupcakes. This went on for months, because although it upset him, he didn't want to complain about it and didn't mention it to me. This situation, combined with a complete lack of challenge, made K a very, very bad place for him and it truly affected him and made him extremely anxious. It was very apparent to my gifted 5 year old that his teacher didn't care if he learned anything, or if he was included.

    His first grade teacher this year was awesome at handling food allergies, and tried her best to differentiate for him. She showed us that school could be better, and made me realize that what I need to do was to get his accommodations in writing so that they would continue. I learned a lot this year and finally got an official 504 plan for him.

    For those of you without children with food allergies, try to imagine if you (as an adult or a child) either had to take your own food to a party, (because you couldn't safely eat at buffets or eat food that was unlabeled) or choose not to eat while you were there. Imagine a world where as a child your mother had to tell you to NEVER EVER eat anything unless she told you it was okay or you could read the label yourself (even if it looked familiar), or unless your teacher told you she had communicated with your mom and it was okay.

    Imagine a world in which you do everything you are supposed to do to keep your food "safe," and it still causes anaphylaxis because it was cross-contaminated and no one knew. frown Just for a moment, imagine that eating something as simple as cut-up apple slices or a chicken finger at a restaurant could kill you, and you might be able to see the kind of anxiety children with food allergies live with every moment of their lives. Some people will say "just don't go to restaurants" but we are trying to provide a "normal" life for our son, so that isn't really an option. He doesn't buy food from the cafeteria in school, doesn't eat most baked goods, has his own "safe" food, and sits at the "nut free" table, but still has contact reactions at school on occasion.

    The sad fact is, however, that food is always on his mind, and the continuous presence of food in the classroom detracts from his ability to learn. I am not advocating taking food out of the classroom, but it does detract from my child's ability to learn. And having to advocate for him regarding his Auvi-Q and his food allergies makes me "THAT MOM" even before I dare to mention the need for differentiation due to his being gifted.

    We didn't do anything to cause his food allergies, and I would do ANYTHING to make them go away. They just happened, and no one knows why. What I would like all parents to know is this: It could have happened to your kid, but it happened to mine. Allergies don't define him, they are just a condition he has. However, as an extremely gifted child, they are just something else that sets him apart from the more "typical" kids.

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    Quote
    trust that schools require *intense* documentation and proof of that allergy from medical drs (at least our school district does).

    Not mine. I know this because of the parent I was talking about earlier, whose child has IgG food sensitivities that she diagnosed using elimination diets. She reported them to the school as food allergies. Now, the child does not have a 504, so it's not like that, but there is some accommodation in the classroom, etc.

    Quote
    for a child who's been confirmed as having food allergies, please don't assume that they aren't at risk of a severe anaphylactic reaction just because they haven't already experience anaphylaxis.

    What do you consider confirmed food allergies? I ask because I technically have food allergies, I guess. To be more precise, on skin prick testing I measured 2+ and a 3+ to, let's see, 10-15 foods. I have a possible mild reaction to one of these foods but it's not in any way severe and I do not carry an Epi Pen. Now, I know people who had their kids allergy tested due to vague symptoms (NOT due to a clear IgE-mediated reaction after eating), got results similar to mine, cut out all those foods and began to proceed as though anaphylaxis were possibly imminent. No food challenges, which I am told by my allergist is truly the gold standard (I was offered this and declined). Now, note, I did not test positive to peanuts or shellfish, so I don't know if advice would have been different if I had, and I am an adult who is more prone to recognize a problem in progress. I am still learning, but it is certainly my impression that this is complex.

    If you read the literature on allergies, it's pretty clear that a large percentage of the popoulation reports having food allergies but by medical definitions, only a small # truly do. Please don't misunderstand me--this isn't to say that children who have had anaphylaxis and obvious reactions do not have food allergies!! I am not talking about that here, but there is a large self-diagnosis group, and then there are those who may have gotten less clear or different advice from an allergist than I did.

    It would be nice if we had a more accurate test.

    Last edited by ultramarina; 06/06/14 08:19 PM. Reason: clarity
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    This went on for months, because although it upset him, he didn't want to complain about it and didn't mention it to me.

    This brings up a GREAT series of points.

    1. HG children are extremely bright and often highly perceptive about others around them, yes?

    2. Following from that, at a VERY young age, kids with life-threatening food allergies learn that adults are not all trustworthy-- they also learn that even adults that SHOULD care about them and love them-- sometimes put food before their welfare, and almost certainly before their feelings. My DD knew this by the time she could walk, I think-- truly.

    3. Such children learn to be PLEASERS-- in a big way. Because their LIVES depend upon it. They DO NOT make waves, these kids. They know (and believe me, even if they didn't, people have no trouble telling them) that they are wherever merely by being granted a FAVOR. Inclusion or safety is never a given-- with anyone. It's always because someone or a group of people has opted to do you the FAVOR of including you, however cursorily.

    4. Perfectionism is also a HUGE problem with these kids. HUGE. Think about it-- they are kids that know that a single mistake could be fatal. The stakes don't get much higher than that. They also learn that if they fail to please OTHERS, that largesse can be withdrawn in a heartbeat.


    With that set of constraints, most parents are backed into a corner of either homeschooling or keeping their child reasonably safe at school. Appropriate academics is quite a ways down the list, quite frankly. The BEST that most of us can hope for is that a school won't irreparably damage our kids' ability to function in a world that will be forever extremely hostile toward them.

    This is why we chose virtual school with all of its (myriad) problems-- it was better than the other alternatives. And let me be blunt-- it's BAD. Talk about least-worst. But at least we don't hand over duty of care to others routinely, and the accreditation means something in the long run.

    As a parent, I know that my kid doesn't have the freedom that others do. I know that if she wants to "try" something, we have to do a lot of ground work first-- and that she had better be a DELIGHT to have around, because she is a complete pain to deal with and anxiety-provoking for anyone with half a brain, quite frankly. My radar jangles when I deal with someone who IS NOT freaked out, quite bluntly. Because they SHOULD be.

    Try explaining to others that there is "safe enough for {DD} to attend" versus "safe enough for {DD} to eat at" versus "safe enough for {DD} to eat the food provided." Those are not the same things. We ask ONLY for the first of those-- ever, and we apologize if others thought that making an event "allergen-free" meant that DD was going to eat food they brought. Not happening-- and really, we're doing those people a huge favor-- I say that as someone who has fed her something that made her gravely ill in minutes. It's hard to overstate that horror.

    My daughter also had to learn (the hard way) that our number one motto is "be ready, willing, and able to walk away from danger in an instant if the situation goes south." She is not as willing to do that as I would like, and I think it amounts to lack of life experience.

    It makes me bristle a LOT to hear my daughter termed "immature" either socially or emotionally. She is neither. She deals with this with a level of grace and skill which is MIND-boggling. Imagine performing at an elite level while simultaneously watching a judge and where s/he puts his hands-- continuously. She monitors where 'touch surfaces' are in an environment, and avoids them when possible, and when not, she tends to wear long sleeves that she can cover her hands with (to open doors, touch railings, etc)-- failing THAT, she is VERY aware of when her hands might be contaminated from her environment and she is flat out better about not touching her face than any adult I've EVER known. She does all of that. With a smile. When your eleven year old can apologetically ask an adult judge to "please wash your hands before you handle my score sheet, if it's not too much trouble?" that is NOT an example of "immaturity." It's not paranoia, either-- the risk is real, whether others believe it or not.

    Frankly, she puts most middle-aged adults to SHAME. She is well into Dabrowskian level IV, and regards others with a sense of sadness that they don't "see" the world around them...

    But this leads me to another really important point about people like my DD. They can't win with others, and it isolates them horribly.

    They have two choices--

    a. accept exclusion gracefully, placidly, and serenely-- with perfect poise and manners, in which case others will use it against you as a reason TO exclude you (OH, it's okay to hold the meeting at the {allergen-laced} restaurant {that DD can't even go into}-- she said she doesn't mind! smirk or--

    b. Show that it gets your goat-- be sulky, or sad when people are selfish or mean or petty about it. OH, well, then in that case, it's an example of emotional immaturity.

    mad That dichotomy is surreal. My daughter errs on point a, by the way. She's learned that she HAS to be seen as "mature" if she's to be accepted by academic peers-- no matter the cost.

    Getting an idea why she is so crushingly LONELY? Even her "friends" have no idea when things bother her. She's too grateful that they include her at all.



    Here is the last note about this. I have a feeling that many parents here can identify with this. By the time kids like my DD are adolescents, one of two things is true--

    either they remember a very serious (and frightening) reaction, or-- if parents have been very lucky, and VERY diligent-- they do not. One or the other. What all of them want more than anything is to forget about it and be LIKE EVERYONE ELSE. Just for a while. Just once.

    On second thought, maybe not remembering reactions isn't so lucky. {sigh} Because teens will take risks that are unthinkable in the name of fitting in. The more desperate they are to fit in, the higher the risk they'll tolerate.

    This is why adolescents with food allergies-- and in particular, GIRLS with them, between the ages of about 10 and 16-- are at the very peak of vulnerability to fatality. They would (in some cases literally) rather die than be a killjoy with their friends.

    By the way, there ARE no accurate statistics regarding food allergy fatalities, as many deaths are very likely coded inaccurately. COD would be respiratory or cardiac arrest in most cases, but could be termed asthma or something else. Studies bear out that recognition and proper treatment is woefully inadequate, even in emergency room physicians. If they don't see hives, they aren't thinking allergy-- and hives are WORRYINGLY absent in most kids beyond the age of 8-10 or so. They tend to have cardiovascular and airway impairment without a lot of cutaneous symptoms.

    Oh, and studies about casual contact, studies about threshold doses for many food allergens? DEEPLY flawed. The reason is that they systematically exclude the end of the bell curve. The reason is that those with the lowest thresholds also (worryingly) seem to have the most severe reactions-- and those with very severe reactions in their history? THOSE patients, especially in children, are USUALLY excluded from studies to start with.

    What that means is that the most sensitive and severe responders tend to be grossly underestimated in studies intended to determine "how much is too much" and "is this clean enough?" and "how dangerous IS an airplane/cafeteria/contaminated surface, anyway?"

    So yes, I'm very sure that kids in the 1% here tend to look as though they are completely neurotic-- probably to the point of craziness. We look like helicopter parents. We walk a tightrope here-- because this IS a huge responsibility to place on a child, and PG or not, our DD14 is a child-- but if we help her in appropriate ways, SHE is unfairly branded as "lacking maturity" even though it would be acceptable if she were 17.

    It's crazymaking.

    Last edited by HowlerKarma; 06/06/14 08:36 PM.

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    Blackcat- Some people MAY blow it out of proportion, but most don't. If anything most of the people I know understate the severity of their children's food allergies when speaking to people who don't have children with food allergies, due to the social stigma associated with it. I would think that most people with children with "mild" allergies such as your strawberry allergy wouldn't even mention it (just like you don't), because there is definitely no positive reinforcement being offered for mentioning a food allergy.

    Most reputable allergists won't diagnose an initial food allergy without a reaction from eating the food. Certain foods such as nuts, peanuts, and shellfish are more likely to cause anaphylaxis, although other food allergies can also be that severe. Some food allergies may just cause hives and eczema, but people still mention them because who wants their kids to get hives and eczema if it can be avoided?

    More people don't die of food allergies because they carry epi-pens and auvi-Qs. When they have a reaction, they are able to inject themselves thus stabilizing themselves long enough to get an ambulance to the hospital.

    According to FARE ( Food Allergy Research and Education)

    -Every 3 minutes, a food allergy reaction sends someone to the emergency department – that is more than 200,000 emergency department visits per year.

    -This potentially deadly disease affects 1 in every 13 children (under 18 years of age) in the U.S. That’s roughly two in every classroom.








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    Originally Posted by HowlerKarma
    But this leads me to another really important point about people like my DD. They can't win with others, and it isolates them horribly.

    They have two choices--

    a. accept exclusion gracefully, placidly, and serenely-- with perfect poise and manners, in which case others will use it against you as a reason TO exclude you (OH, it's okay to hold the meeting at the {allergen-laced} restaurant {that DD can't even go into}-- she said she doesn't mind! smirk or--

    b. Show that it gets your goat-- be sulky, or sad when people are selfish or mean or petty about it. OH, well, then in that case, it's an example of emotional immaturity.


    Yes. This. This begins in KINDERGARTEN (or earlier), and they are expected to be happy and smile and say that it doesn't matter (even if it does.)

    Teachers try to tell me my son is immature because he won't accept food from them unless they have spoken to me. But he knows in the past he has been given "unsafe" food by people who should have known better, so really, it's not immature. His LIFE is at stake, and he knows it - that's not immaturity.

    Last edited by momoftwins; 06/06/14 08:41 PM.
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    Most reputable allergists won't diagnose an initial food allergy without a reaction from eating the food.


    Not sure that one is true, actually-- the gold standard these days is to not even TEST for something without a good reason (reaction history and suspicion).

    BUT, there are still a LOT of allergists out there using skin prick testing and RAST numbers to "diagnose" allergies with no clinical history at all-- and the bad part of that is that the former has about 50% false positives, and the latter isn't much better than that. On the flip side, negative testing is much more likely to be accurate-- about 95% accurate in skin tests, and-- well, it's hard to say with RAST values, but it's at least 75%.

    Protein component testing is pretty promising here, actually-- for example, with peanut, there are 8+ seed storage proteins that come up when you run ELISA's (blood tests) for IgE, but only a couple of them are associated with anaphylaxis potential. So someone who skin tests positive for peanuts but has no clinical history, or one suggesting that this might be something more like pollen-allergy-syndrome, that person could now be component tested to see whether Ara h2 lights up or not (that's one of the bad ones).

    For more info about that:

    https://www.uknowpeanut.com/

    So it's been known for a long time that about 35-40% of people with peanut allergy have the ability/propensity to anaphylax, but it's only in the past 3-5y that researchers have had ANY idea how to tell who is who there (barring the obvious, of course). It also seems fairly likely that those with some kinds of IgE are less likely to "outgrow" allergies.

    Again, this isn't really news, as prominent clinicians in the field have known for a long time, for example, that children who tolerate baked egg or milk (heat denatured) tend to be "outgrowers" and those who don't tend to never outgrow, or to do so quite late.

    So again, one of two types of IgE there-- the kind that seems to be sequence-specific, perhaps, or the sort that depends upon native tertiary protein structure.

    In short, Ultramarina is ABSOLUTELY correct to state that this is a total quagmire diagnostically. There are far too few GOOD pediatric food allergy specialists out there, and at the other end of the extremes; far, far, FAR too many quacks waving energy wands over people...

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    Originally Posted by ultramarina
    Quote
    trust that schools require *intense* documentation and proof of that allergy from medical drs (at least our school district does).

    Not mine. I know this because of the parent I was talking about earlier, whose child has IgG food sensitivities that she diagnosed using elimination diets. She reported them to the school as food allergies. Now, the child does not have a 504, so it's not like that, but there is some accommodation in the classroom, etc.

    Quote
    for a child who's been confirmed as having food allergies, please don't assume that they aren't at risk of a severe anaphylactic reaction just because they haven't already experience anaphylaxis.

    What do you consider confirmed food allergies? I ask because I technically have food allergies, I guess. To be more precise, on skin prick testing I measured 2+ and a 3+ to, let's see, 10-15 foods. I have a possible mild reaction to one of these foods but it's not in any way severe and I do not carry an Epi Pen. Now, I know people who had their kids allergy tested due to vague symptoms (NOT due to a clear IgE-mediated reaction after eating), got results similar to mine, cut out all those foods and began to proceed as though anaphylaxis were possibly imminent. No food challenges, which I am told by my allergist is truly the gold standard (I was offered this and declined). Now, note, I did not test positive to peanuts or shellfish, so I don't know if advice would have been different if I had, and I am an adult who is more prone to recognize a problem in progress. I am still learning, but it is certainly my impression that this is complex.

    If you read the literature on allergies, it's pretty clear that a large percentage of the popoulation reports having food allergies but by medical definitions, only a small # truly do. Please don't misunderstand me--this isn't to say that children who have had anaphylaxis and obvious reactions do not have food allergies!! I am not talking about that here, but there is a large self-diagnosis group, and then there are those who may have gotten less clear or different advice from an allergist than I did.

    It would be nice if we had a more accurate test.

    Please see my post above this one. I agree with you, by the way. I was diagnosed with a shellfish allergy as an adult (though I probably developed that allergy when I was about 8-9yo, in light of my history). No testing needed, as history is pretty conclusive, and yes, I have anaphylaxed pretty convincingly. I carry epinephrine and avoid.



    There are better diagnostic tools, and a better practice parameter exists now, as well.

    http://www.aaaai.org/practice-resou...arameters-and-other-guidelines-page.aspx

    Number one rule there is probably: IgG has nothing to do with food allergies.

    {sigh}

    A great source to explore some of these issues is at AAAAI's "ask the expert" archives (our allergist is one of their experts-- it's kinda fun to guess which allergist is answering, actually):

    http://www.aaaai.org/ask-the-expert.aspx


    Last edited by HowlerKarma; 06/06/14 08:54 PM.

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    It was very apparent to my gifted 5 year old that his teacher didn't care if he learned anything, or if he was included.

    This is the bit of things where there is probably a UNIQUE issue that exists primarily for HG/HG+ children-- they realize this when they are FAR too young to emotionally process how someone who seems "nice" or "loves me" could also pose a grave risk to them in a moment of thoughtlessness, or actually TRY to "prove" something by deliberately exposing them.

    Mostly, it's just self-centered behavior that is incredibly hurtful-- leaving the child thinking "Wow.... and YOU are the "grown up" one here??"

    It is terrifying for a child like that to be left in the care of an adult that they KNOW is a danger to them, or deep down doesn't believe/care. NT children with food allergies tend to be happily oblivious to this until they are better able to process that set of salient facts, but HG+ ones know-- they know WAY before they should. My personal estimate, based on my DD, is that most of them figure some of that out by the time they are four or five. Younger in some cases.

    It turns them into empaths or human satellite dishes, honestly-- they learn to read people like they are space aliens with special powers. They can TELL when someone is just blowing them off. They also learn to tell when someone CANNOT get it, versus just "will not" or "maybe could." Interestingly, DD doesn't seem to resent that some people she knows and loves dearly are in the "just can't go there" group with her allergies. She just accepts that she has to be on high-alert around them, because they are simply oblivious to things like touching her food (rendering it unsafe for her), etc. She simply doesn't hold it against them.


    Interestingly, something that I've noted about my DD and I that most people seem to lack-- is an ability to separate my rational side from the emotional one when it comes to individual people in my life. I may LOVE a friend dearly, but know that I shouldn't rely upon him for money, for example. I might be able to dislike someone intensely on a personal level and still be completely professionally cordial and productive with that person. The reason that I think it is connected is that I, too, had to learn very young (and process very young, thanks to a high cognitive ability) that people who LOVE us may not always be GOOD to us or for us, and may in fact be quite dangerous, even if we love them in return... and that the two things have nothing to do with one another. I have speculated that growing up in emotionally challenging circumstances may lead to this kind of phenomenon. It's a certain pathos-driven acceptance of others-- but it's tempered by pragmatism.



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    Why are people eating cupcakes in the classroom? Cupcakes! How about an education instead of junk food. As a non-American, and now a homeschooler in America, I really don't really know what goes on in the American classroom, but some of the things I read are just weird. As a kid I don't remember eating in the classroom at all.

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    Originally Posted by 22B
    Why are people eating cupcakes in the classroom? Cupcakes! How about an education instead of junk food. As a non-American, and now a homeschooler in America, I really don't really know what goes on in the American classroom, but some of the things I read are just weird. As a kid I don't remember eating in the classroom at all.
    In my son's PS last year, they had a million cupcakes (it seems like that to me), chocolate chip cookies, Disney movies (teacher had a Netflix account for the classroom, I kid you not), the first day welcome package from teacher containing candy, valentine's candy, halloween candy, rice krispies, marshmallows, oreos, candy cane, gingerbread houses (I am sure I missed half the fun stuff). I know all this because my DS does not eat sugary stuff - he just shoves it all in his backpack and brings it home. And the people with allergies got juice boxes, I was told frown
    I made a racket about it once and they allowed me to bring in bagged apple slices - and then, back to the cupcakes.
    We are no longer with that school.

    ETA: How did I forget the Pizza parties and the "Celebrate Fall with Donuts" party and the "Welcome Summer with Popsicles" party???

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    Originally Posted by momoftwins
    Originally Posted by HowlerKarma
    But this leads me to another really important point about people like my DD. They can't win with others, and it isolates them horribly.

    They have two choices--

    a. accept exclusion gracefully, placidly, and serenely-- with perfect poise and manners, in which case others will use it against you as a reason TO exclude you (OH, it's okay to hold the meeting at the {allergen-laced} restaurant {that DD can't even go into}-- she said she doesn't mind! smirk or--

    b. Show that it gets your goat-- be sulky, or sad when people are selfish or mean or petty about it. OH, well, then in that case, it's an example of emotional immaturity.


    Yes. This. This begins in KINDERGARTEN (or earlier), and they are expected to be happy and smile and say that it doesn't matter (even if it does.)

    Teachers try to tell me my son is immature because he won't accept food from them unless they have spoken to me. But he knows in the past he has been given "unsafe" food by people who should have known better, so really, it's not immature. His LIFE is at stake, and he knows it - that's not immaturity.

    A friends kid was told by a teacher that something was ok to eat the other day. Turned out it was made with almond meal and she has a tree nut allergy. Her reactions have been getting more severe with each exposure and that caused he first anaphalaxis. It has been decided in future she will only eat food made by her mother and her best friends mum but I can't help wondering whether next time contact will be enough. The parent who bought the food probably didn't even know there was such a thing as almond flour. It was labelled gluten free and she probably had some vague concept that it was for people with allergies.

    There are people who claim allergies they don't have but it is more ignorance. Lactose intolerant people may be able to manage some but someone with a milk allergy can't, celeic are more affected that someone with a gluten intolerance, some peopleget headaches from nuts and say they are allergic but some people die. It is also easier for a child to say they are allergic to something than that it gives them explosive bowel motions. And I know a few complete idiots - I know a woman who claims she is so sensitive to caffiene she can't have 1/8 of a teaspoon in a cake but drinks coke. The fact there are morons doesn't make your concerns less important though and certainly doesn't justify putting a child's life at risk.

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    Originally Posted by ashley
    In my son's PS last year, they had a million cupcakes (it seems like that to me), chocolate chip cookies, Disney movies (teacher had a Netflix account for the classroom, I kid you not), the first day welcome package from teacher containing candy, valentine's candy, halloween candy, rice krispies, marshmallows, oreos, candy cane, gingerbread houses (I am sure I missed half the fun stuff). I know all this because my DS does not eat sugary stuff - he just shoves it all in his backpack and brings it home. And the people with allergies got juice boxes, I was told.

    Buying that junk food is expensive, and sorting it into individual portions with decorations is time-consuming. I'm just imagining how what was probably a few thousand dollars siphoned into "food" could have instead been spent on books for the classroom, a computer or two, or equipment for funky labs. Imagine if instead of being head of the party planning committee, the teacher built in fascinating enrichment opportunities and paid some extra one-on-one attention to the children. Not eating also doesn't mean the teacher doesn't have to be celebratory.

    I always remember thinking as a child that when the cupcakes came out on a birthday, the rest of the day would be a waste of my time. I wonder how many other GT students felt the same way.


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    Originally Posted by aquinas
    Imagine if instead of being head of the party planning committee, the teacher built in fascinating enrichment opportunities and paid some extra one-on-one attention to the children.

    Here teachers have nothing to do with it. It's parent-driven.

    There is a general agreement that there should be less snacking in school, and more healthy food. But there is also an unwillingness to scale down the birthday thing-- like an arms race, nobody wants their kid to have less or feel bad. 25 birthdays out of 180 school days is a lot. Some of these parents are also totally unaware of food allergies (as we all know), so the brownies with the nuts may well come right into the classroom.

    For my kid's birthday, I send in a book for the classroom library (wrapped fancy) and let my kid present it for reading aloud. For some reason this model hasn't taken off.



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    Wow, my kids wish they lived in a school district like Ashley's district. They have done a complete 180 on the class parties (both in public and private schools my youngest had attended). Cupcakes, candy and anything remotely resembling a treat is banned. Sorry, but parties aren't all that fun with raw veggies and fruits.

    And I am surprised that teachers aren't more careful about foods. While it isn't fair to put the burden to determine "safe foods" on the kid, I have found that bright kids are pretty good figuring that out on their own. DD16 switched schools when she was 4 and met a kid who was seemingly allergic to everything. I was scared to offer this kid anything but a glass of water. But this kid (likely HG) knew what she could and could not eat by age 4. And if she had any question in her mind if the food was safe, the teacher would bring out a "safe snack" (she kept a supply of these in her desk).

    In DD9's elementary school, whenever they have an event where you bring in food, every ingredient must be listed on a card attached to the dish. I see schools around here being really careful - maybe because there are so many attorney parents.

    As for pediatricians, let me know if you find one that is even of average IQ. I typically diagnose my kids (and myself) and go straight to the specialist. I would never trust a pediatrician to advise me on allergies (or anything else). We have met some wonderful specialists, and I'm sure there are some great pediatricians out there, but I haven't found them. DH thinks I'm nuts but the kids in my HS who became doctors were middling students at best - not kids that anyone ever referred to as "bright".

    And aquinas, I'm sorry that the cupcakes messed up your day, but I know that cupcakes really make the day for my GT kids. I know that my kids can go overboard on the junk. Maybe it is just the competitive nature of DD18, but last year she got into a Froyo eating contest with others at a local yogurt shop. 44 ounces later she had her picture on the wall of the shop. And no, she isn't tubby, but she is the heaviest of my kids at 5'4", 105.

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    What I'd like to know is why schools and classrooms are party venues at all.

    I thought schools were for, you know-- education.

    And the "fun" argument? Yeah-- I get how veggies don't say "fun party." MY question is-- why does school need to say it??

    Now put yourself in the shoes of a child that I personally know-- a HG child-- who sat in a room full of other children eating glorious bakery cupcakes... and looked at-- a whole, fresh vegetable brought in for show-and-tell, which the teacher "kindly" offered instead. Nice that he "didn't mind" enough to "ruin it" for anyone else, though, I suppose. frown



    Honestly-- that one is a slap in the face to anyone like me whose kid will NEVER-- NEVER-- get to "enjoy" the "party" like your kids. Schools are bound by federal law to be inclusive. They are choosing to allow crap into classrooms for non-educational purposes, and then they turn parents like me into the bad guys for wanting it to STOP.

    Crazy world.

    As for "knowing" what they can and cannot eat-- PLEASE re-read my posts. My daughter knew that as well. She's just not lucky enough for that to be sufficient, given that as little as a few milligrams of an allergen can send her into anaphylaxis-- and has. Being around unsafe food IS, in and of itself, very dangerous for her. The single most irritating and ignorant question of all time has to be; "why don't you teach her what she can't eat, then?" A close second is the incredibly foolish assertion that she could eat whatever she liked if we got her one of "those pen things."

    News flash: some kids are just plain more TRUSTING than others-- and not even PG kids have the judgment of adults when they are 2 or 3 years old. Believe me, we know how dangerous their assumptions can be at that age, smart as they are. My daughter has also carried her own autoinjectors (Yes, plural, and always a mix of lot numbers) since she was two years old. She wears them EVERYWHERE, and they hang in the same location in our home.

    So while I'm glad that cupcakes really "make the day" for some kids-- I'll be honest here and suggest, with all due respect, that maybe they belong somewhere other than classrooms that have food-allergic children in them. I think that the statistics there are pretty compelling in suggesting that most preK through 3 classrooms DO have at least one child like that in them. While far fewer than 5% of those children is like my daughter, some of them are-- and the larger issue is why on earth it would ever be okay to exclude ONE child systematically like that all year long, even if it didn't make that child feel inherently unsafe in the process.

    School attendance is compulsory-- as in the case that Elizabeth posted, and schools can use this to leverage parents to accept risks for their children in our absence that we would find UNTHINKABLE if our kids were in OUR care instead. That, deep down, was the breaking point for me with schools, public or private. They wanted ME to be okay with THEM taking risks with my child's safety that I found horrifying-- which led me to believe that fundamentally, they were too stupid to take good care of her, or they wouldn't be willing to do them, either.

    Last edited by HowlerKarma; 06/07/14 07:52 AM.

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    Food incentives are also another area which is fundamentally different when you are a person with life threatening food allergy.


    Oh.. yay.... a "pizza party." At the pizza place that I can't even go into. Wow, I'll be sure and work extra hard for THAT treat for the class... eek

    Oh... yay... if I read more books, I could get Ice Cream certificates!! Um-- except, kind of not that good an "incentive" since I don't want them, because then I'll just have to explain why I'm not all excited about it, and well, yet another opportunity for my food allergies to ruin everything for me. Great. I'm not going to turn my reading logs in this week.

    I'm reminded of a classmate that I knew as a child-- who was certainly MG, maybe brighter than that. She (I later learned) had juvenile arthritis that made recess a SERIOUS bummer. She used to routinely act out so that she'd be held in at recess-- and was quite successful at keeping her disability hidden when she was experiencing a flare. Reading a book was better than just sitting outside and watching the rest of us do things that she found too painful (or was forbidden from doing).


    This stuff matters. A lot.



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    Originally Posted by HowlerKarma
    What I'd like to know is why schools and classrooms are party venues at all.

    I agree. It is a relief to me here that in middle school the whole enterprise goes away, and school is school.

    HK, you've written very powerfully here, and I agree with what you say. Any chance you can repost somewhere where lots of teachers and school admins will re-read? People NEED this perspective in order to understand.

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    Originally Posted by HowlerKarma
    Interestingly, something that I've noted about my DD and I that most people seem to lack-- is an ability to separate my rational side from the emotional one when it comes to individual people in my life. I may LOVE a friend dearly, but know that I shouldn't rely upon him for money, for example. I might be able to dislike someone intensely on a personal level and still be completely professionally cordial and productive with that person. The reason that I think it is connected is that I, too, had to learn very young (and process very young, thanks to a high cognitive ability) that people who LOVE us may not always be GOOD to us or for us, and may in fact be quite dangerous, even if we love them in return... and that the two things have nothing to do with one another. I have speculated that growing up in emotionally challenging circumstances may lead to this kind of phenomenon. It's a certain pathos-driven acceptance of others-- but it's tempered by pragmatism.
    This is a favorite theme of mine...along with the idea that there are people with whom you can have a genuine relationship (not artificial, nor would I call it shallow), but within certain limits. And that's okay. Intense people may naturally want the same level of intensity to be reciprocated in their relationships, but not everyone is there, and one can learn to accept and appreciate each relationship for whatever the other person is able to invest into it, eyes open, and with realistic boundaries for self-protection.

    I guess it's the understanding that everyone has flaws, but that that should not prevent us from loving them (or them from loving us). I prefer to think of it as compassion and mercy--which is often learned through tragedy, but can be learned through grace as well.


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    Originally Posted by DeeDee
    HK, you've written very powerfully here, and I agree with what you say. Any chance you can repost somewhere where lots of teachers and school admins will re-read? People NEED this perspective in order to understand.

    ITA.


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    Birthday parties in the classroom? What?!

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    I have. For many years. Also-- if you like what I've written, you'll LOVE Bettina at The Lunch Tray. She covers a lot of the same ground. smile

    In fact, her Manifesto is a thing of profound beauty.


    Mostly, I've spent those years helping other parents to get what they (and their kids) need out of schools, using resources that most parents have the ability to muster.

    It is true that things have come a long way since my DD was a four year old that a teacher told me to NEVER put into a classroom in our city. Our district had not one school nurse, our state had no laws permitting my child to keep epinephrine unlocked and near her in a classroom, and the district served her allergens at every meal, in every school in the district. At least she could carry epinephrine now-- but it's clear why only half of that assertion about never placing her into a Kindy classroom was about being gifted.

    I'm proud that reporting a food allergy now means that our virtual school (nationally) will evaluate a student under Section 504. That in and of itself is huge-- because until my DD, they didn't see why that was necessary. I have helped them to hammer out and craft a national protocol-- and slowly but surely built in the mechanisms to fulfill elements of those 504 plans. We did that. DD's high ability made them want to do it so that they could use her as a PR show-pony. We did allow that arrangement, until DD objected.

    Even in a virtual school, that 504 plan is all that stands between her and a second-class educational experience (and-- as noted in the Dear Teacher thread, sometimes not even then).

    Just this year, during a teacher contact day, the ONE event local to us was specifically labeled "This trip unsuitable for nut-allergic students." sick Seriously. So it isn't that there is perfect inclusion even here. There has been significant erosion over the past two years since I quit being rather pushy during annual 504 meetings. {sigh}


    I've spent my time helping other parents navigate the system (or decide when to walk away)... and I've made what changes I could where I could. It's a journey. What has made a difference, I think, is that I don't fear attorneys. I know that the law is generally on the side of kids with food allergies (well, it is when the impairment is so clear, and when your specialist is a high roller and agrees with you, anyway). So the school's attorneys are actually on MY team.

    I should also point out that I know (somewhat) the parent in the case posted. I help to run a support group for parents, and a depressing number of them are like them. I say depressing because the amount of energy that has gone into things is positively Herculean, and there are still places where schools are so malevolent and backwards about kids' safety. It's depressing in much the same way that fighting for HG+ children to get appropriate education is depressing.

    It feels like no progress is ever really made for long.

    I have incredible respect for the parents who have the intestinal fortitude to go through with due process rather than just "walking away" (homeschooling). School districts have, for far too long, been able to BULLY or intimidate families like mine, since they all know that they ultimately hold the trump card of safety. Most parents ultimately do what we did-- they fold and homeschool, no matter what that winds up costing them.

    I'm awed-- and humbled-- by the will, unselfishness, and dedication of parents like those in the link posted at the start of this thread.



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    My perspective here is what informed my perspective about Section 504 evaluation-- and why you never, BUT NEVER-- no, really never-- tip your hand as to likely accommodations PRIOR to a finding of eligibility.

    School districts LOVE to find out what you're after so that they can deny eligibility. Once you're not a QID, they don't have to do anything they won't do for ANY student.

    Cynical? Oh you bet-- but look at the court case that started this thread. That's not unusual. What's unusual is that the parents fought back.



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    As sort of an aside, I have an experience to share. I chaperoned my son's school trip to the zoo recently. First time I ever chaperoned. But it was an unnerving experience. So, the teacher gets the kids' epi-pens from the nurse's office on the trips and is suppose to give it to the mom who is in charge of my son's small group. Teacher forgot. She emailed me over two hours into the trip that she had forgotten to give me DS's epi-pen and if we wanted to meet up somewhere we could get it to me. But even though I have an iPhone, I wasn't checking my email on it because I was trying not to lose kids. smile And, of course, I had an epi-pen b/c I always have one in my purse and DS was wearing his epi-pen in his epi-belt in which he carries other allergy meds. I always put his epi-pen belt on him for field trips b/c I am afraid of this sort of thing - I am afraid the epi-pen will be too far if something were to happen, I am afraid the chaperones won't believe/know he is having a reaction, etc. Now what if I had not been chaperoning? The group leader of my son's group would have had no epi-pen. Fortunately, like I said, I put my son's epi-belt on him for these things. But I am still unnerved because my son has never given himself the pen (I have always given it to him during reactions). Also, the reactions are scary I imagine him actually stopping while having a reaction and just being left by his group. He just had a reaction in January in the supermarket and it was so bad so fast and he was going into shock so it was hard for him to think straight. I don't know. How can I make the school field trips safer? There is a child with diabetes and his father goes on every trip - maybe I should start doing the same (you gave to be "picked" to chaperone but I could insist on going due to the disability like he does I think). I don't know made me nervous. Would like to hear HK's thoughts and others with allergic kids on this. Examples of things to put in his iep/504 to help with this?

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    When we had an IEP meeting for DS5.10 last year to discuss his progress and accommodations for Kindergarten, the SCHOOL NURSE questioned the need to carry epipen on him at all times (our request) given the fact that we had never actually had to use the epi. I made it very clear to her that it wasn't because his allergy wasn't severe but because of how well we've managed his allergies! (The one time epi would had come in handy was when he first reacted and we did not have epi on hand yet). But seeing how clueless a HEALTH PROFESSIONAL was, I realized this was a battle we could never win.
    Long story short, I created a very strong emergency health care plan, stronger than any other parent at school, but we still only managed one semester of Kinder and then pulled him out to homeschool. There had been too many times when things could had gone wrong and I didn't want to take any more risks. Life is so much easier now that we don't have to think about school vs. allergies!

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    and just to add ... after we pulled DS out, the class went back to very lax attitude when it comes to food and allergens (cupcakes, ice cream and pizza parties, donuts, candy) even though there was another boy with the same severe allergies as DS has (plus this little boy has even more!) but his emergency care plan was nowhere near what we requested and his parents didn't find it necessary to ask for more. Even the "egg free classroom" sign disappeared from the door to the classroom after DS was pulled out. It's a "nut free school" but unfortunately not much is done for kids with other allergies.

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    Irena, a standard accommodation (though, as you can probably see, it is really more of an accommodation that PARENTS make than schools) is that parents of kids who have life-threatening food allergies are ALWAYS permitted/required to accompany their children on field trips. Oh-- and that no, you are NOT responsible for other kids. I'm basically there as an Aide for my child. To the school that hasn't thought that one through-- You're welcome, by the way. It's me or a trained para/nurse. You choose. The child HAS to be with a person that s/he knows and trusts, and that person has to be trained to respond to anaphylaxis.

    Honestly, the places where things break down the fastest are in any breaks from regular routine.

    Those are places to focus on failsafes upon failsafes when you write an IEP/504.


    DD has never been given over to the school's duty of care. Even for state testing, she has me nearby-- and is tested one-on-one. Our reasoning there is that ANY instance in which she WOULD be in the school's care is effectively out of the ordinary, and that she lacks the assertiveness with people she doesn't know well-- and that she is so rapidly incapacitated...

    Well, here:

    This plain-language chart describes what we're up against. I used to put in red any symptoms that we'd actually SEEN in our DD during reactions, but eventually quit doing that when there was much more red on that chart than black.

    DD may never be completely able to count on herself to self-administer rescue meds. The problem is that her blood pressure crashes and she is cognitively impaired first.


    SO mostly, we see symptoms on the right side of that chart, and have since she was three or four. Even physicians (and we) have trouble telling what's what in a timeline that matters. Someone who doesn't know DD very well (well enough to know what "normal" affect looks like, and perceptive and intelligent enough to see 'something is off') pretty much stands NO chance of making any difference in treating a reaction in a timely manner.

    I love that chart, btw. It's SUCH a useful tool-- symptoms from any two columns, > grade 1 = epinephrine and emergency room.

    Anything bold = epi and ER.

    It's great. Takes a lot of guesswork out of things. At least until you get into the far right-hand column. {sigh} Welcome to my life, incidentally. whistle


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    Originally Posted by HowlerKarma
    Irena, a standard accommodation (though, as you can probably see, it is really more of an accommodation that PARENTS make than schools) is that parents of kids who have life-threatening food allergies are ALWAYS permitted/required to accompany their children on field trips. Oh-- and that no, you are NOT responsible for other kids. I'm basically there as an Aide for

    HK ... except when our child has a younger sibling and we have nobody to watch the younger sibling and the school policy says NO siblings allowed. Therefore my son was excluded from the trips because I, his mother couldn't accompany him because they wouldn't let me take the younger child with us. :(((

    Mk13 #193778 06/07/14 11:47 AM
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    Originally Posted by Mk13
    HK ... except when our child has a younger sibling and we have nobody to watch the younger sibling and the school policy says NO siblings allowed. Therefore my son was excluded from the trips because I, his mother couldn't accompany him because they wouldn't let me take the younger child with us. :(((


    I realize that this is a solution that costs money, but - babysitter for the younger? Does the school have a childcare for younger kids? Maybe the accommodation that you need written in is that the school will accept your younger child into childcare on a drop-in basis as needed so that you can accompany the older on field trips.

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    Originally Posted by ElizabethN
    Originally Posted by Mk13
    HK ... except when our child has a younger sibling and we have nobody to watch the younger sibling and the school policy says NO siblings allowed. Therefore my son was excluded from the trips because I, his mother couldn't accompany him because they wouldn't let me take the younger child with us. :(((


    I realize that this is a solution that costs money, but - babysitter for the younger? Does the school have a childcare for younger kids? Maybe the accommodation that you need written in is that the school will accept your younger child into childcare on a drop-in basis as needed so that you can accompany the older on field trips.

    He's Autistic and needs a one on one care. So we don't really have a babysitter or childcare option for him unless my stepson would take a day off from work or it was on a day when my husband isn't working. It would be so easy to just let us (including the younger one) drive in our car and just join the rest of the class at the final destination! But nope, it's against the policy. In which case the SCHOOL is actually supposed to supply an aid / person to supervise my allergic son and carry his meds and be in charge of him, but that was never offered. ... yet another reason why we ended up homeschooling. Now we go on any trip we want and don't have to worry anymore.

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    just to add, I know the NO siblings policy is so the siblings wouldn't be a distraction, but in our case the younger one would just sit in a stroller quietly and observe what's going on. So not much disruption or distraction at all.

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    Right, and in that case, it's an ideal target for an INDIVIDUAL line-item in a 504 plan. Because it's a disability issue, it has to be what is actually workable and most inclusive. In this case, including the sibling.

    This is why "policy" is no substitute for individual accommodations in a legally binding document, by the way. Policy can change. Accommodations are about what an individual student HAS to have, whether it's "policy" or not.

    smile

    It's a nightmare to not be able to (ever) use a sitter. I know several people in that particular boat. {sigh}

    Last edited by HowlerKarma; 06/07/14 12:45 PM.

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    Irena, I'm in a hurry as usual, but fwiw, when we were dealing with our dd's first school and having issues, we found talking to the legal advice person at FAAN and getting his advice was very helpful (and very free!). I don't know if they still offer that service - it was probably 8 years ago when we were working through 504 etc issues for our dd, but I'd definitely give them a call and ask your question re field trips etc.

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    Thanks for those links, HK.

    I'll go on a record as a parent of children without (so far--there's a bit of a question in process with DS) food allergies who would be completely happy to have food out of the classroom. Absolutely don't see a need.

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    Originally Posted by Mk13
    He's Autistic and needs a one on one care. So we don't really have a babysitter or childcare option for him unless my stepson would take a day off from work or it was on a day when my husband isn't working.

    Mk, this is a little off topic, but it might be worth while considering finding an adult friend or a college student who's willing to train as a sitter for you. We have long hired bright, able young adults as sitters-- yes, they are more expensive than regular sitters, but we train them to deal with all the Things that our household deals with (including food allergies and autism).

    We have found that it's actually important for safety to have someone around in the community who can take over for you if need be. I.e. if you ever had to take your spouse to the emergency room. Or whatever. Well worth the time and trouble.


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    Originally Posted by DeeDee
    Originally Posted by Mk13
    He's Autistic and needs a one on one care. So we don't really have a babysitter or childcare option for him unless my stepson would take a day off from work or it was on a day when my husband isn't working.

    Mk, this is a little off topic, but it might be worth while considering finding an adult friend or a college student who's willing to train as a sitter for you. We have long hired bright, able young adults as sitters-- yes, they are more expensive than regular sitters, but we train them to deal with all the Things that our household deals with (including food allergies and autism).

    We have found that it's actually important for safety to have someone around in the community who can take over for you if need be. I.e. if you ever had to take your spouse to the emergency room. Or whatever. Well worth the time and trouble.

    DeeDee, we do fortunately have two friends who are our case of emergency but things like these field trips would clash with their own kids' schedules.
    DS4.2 will be starting 1 time a week for 2 hours in a preschool class that's ran by our local high school ... for students interested in early childhood education just to give DS a chance to be in a classroom setting (we don't want him in the local public school special ed preschool nor the self contained autism class) and to give anyone interested in special needs kids a chance to get some experience ... and I am hoping (fingers crossed) that maybe he will click with one or two of the high school kids and we might be able to "groom" them into our occasional babysitters. There's always hope, right? smile

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    Originally Posted by NotSoGifted
    As for pediatricians, let me know if you find one that is even of average IQ. I typically diagnose my kids (and myself) and go straight to the specialist. I would never trust a pediatrician to advise me on allergies (or anything else). We have met some wonderful specialists, and I'm sure there are some great pediatricians out there, but I haven't found them. DH thinks I'm nuts but the kids in my HS who became doctors were middling students at best - not kids that anyone ever referred to as "bright".

    We must have been lucky, because our pediatrician is definitely someone we trust. It was our pedi who alerted us to seriousness of allergies when we mentioned offhand during a visit for a different issue that we tried bananas for the first time and DS (8months at the time) threw up and had a mild reaction (hives on shoulders/chest), and he sat up and said "what? repeat that, please" and then firmly educated us on the seriousness of allergies and allergic reactions. We got very cautious with all new foods we introduced and avoided all bananas, but we are the lucky few parents whose child appear to have outgrown it (we got the all clear at 3 years old - as a result, DS refuses to touch a banana although he has developed a fondness for banana bread, go figure). And when he was talking to us about allergies, it was clear that he was up to date on the research and various, sometimes conflicting, information that are given to parents. Although he was surprised that bananas had triggered that reaction - and it is amazing how much baby food is centered around bananas.

    (and when DS had a seizure at 2, he was really a big part of helping us deal with that until we got the all clear from our neurologist after a series of very stressful visits - and he was the one who realized that my co-worker's daughter had a very, very early symptom of Type 1 diabetes - even the children's hospital staff were surprised that it was detected so early).


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    Personally I couldn't be bothered doing birthdays and I don't think anyone else can either. They have popcorn parties for special rewards where they get a handful of popcorn and 10 minutes extra play. The exception would be a fifth birthday at preschool because most kids here Finish preschool on their fifth birthday and start school the next day (or finish the day before and start school on their birthday). The friends kid was at a shared lunch at school as part of some event.

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    As a school admin, I can tell you for sure that there are some of us fighting the same fight with our teachers! I have several students with life threatening food allergies, as well as one with a feeding tube and nothing by mouth. The latter is a PG kid who has a degenerative muscle disorder. He has been on my Math Olympiad team for three years that I coach. His one request this year "can we please have an end of year celebration that does NOT involve food?"

    I was absolutely bent on making this happen- we had math games, non-food prizes and certificates etc. Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out.

    Unfortunately, he probably won't make it to that day frown but I am so happy I was able to give him exactly the kind of end of the year celebration he could enjoy without being left out or feeling like he could only have half the fun.

    I am not saying this to brag, but to point out that it isn't just the food allergies- all sorts of kids have health issues that preclude them from celebration food from kids with allergies to diabetics to my math buddy with a feeding tube. They deserve a chance to party too!

    CAMom #193801 06/07/14 06:05 PM
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    Originally Posted by CAMom
    Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out.

    ******** Seriously! The desire to stuff complete utter junk in their kids mouths is THAT compelling? THAT much more important? Really? Like they can't forgo junk food for an hour or two? Seriously? Shame on them - despicable people and downright awful examples to their children. Like that kid doesn't have enough obstacles and hardships. What a disgrace. BUT I love that you did this for him! We need more people like you.

    Last edited by Mark Dlugosz; 06/08/14 11:57 AM. Reason: tone
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    Originally Posted by CAMom
    Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out.

    Unfortunately, he probably won't make it to that day frown


    You are a very good person. I know about section 504 and confidentiality, and it would have been so, so hard for me not to tell them exactly your last line in that quote.

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    Originally Posted by HowlerKarma
    Irena, a standard accommodation (though, as you can probably see, it is really more of an accommodation that PARENTS make than schools) is that parents of kids who have life-threatening food allergies are ALWAYS permitted/required to accompany their children on field trips. Oh-- and that no, you are NOT responsible for other kids. I'm basically there as an Aide for my child. To the school that hasn't thought that one through-- You're welcome, by the way. It's me or a trained para/nurse. You choose. The child HAS to be with a person that s/he knows and trusts, and that person has to be trained to respond to anaphylaxis.

    Honestly, the places where things break down the fastest are in any breaks from regular routine.

    Those are places to focus on failsafes upon failsafes when you write an IEP/504.


    DD has never been given over to the school's duty of care. Even for state testing, she has me nearby-- and is tested one-on-one. Our reasoning there is that ANY instance in which she WOULD be in the school's care is effectively out of the ordinary, and that she lacks the assertiveness with people she doesn't know well-- and that she is so rapidly incapacitated...

    Well, here:

    This plain-language chart describes what we're up against. I used to put in red any symptoms that we'd actually SEEN in our DD during reactions, but eventually quit doing that when there was much more red on that chart than black.

    DD may never be completely able to count on herself to self-administer rescue meds. The problem is that her blood pressure crashes and she is cognitively impaired first.


    SO mostly, we see symptoms on the right side of that chart, and have since she was three or four. Even physicians (and we) have trouble telling what's what in a timeline that matters. Someone who doesn't know DD very well (well enough to know what "normal" affect looks like, and perceptive and intelligent enough to see 'something is off') pretty much stands NO chance of making any difference in treating a reaction in a timely manner.

    I love that chart, btw. It's SUCH a useful tool-- symptoms from any two columns, > grade 1 = epinephrine and emergency room.

    Anything bold = epi and ER.

    It's great. Takes a lot of guesswork out of things. At least until you get into the far right-hand column. {sigh} Welcome to my life, incidentally. whistle

    Thanks HK. I am going to put this ("ALWAYS permitted to accompany my DS on field trips as an Aide for my child") in my son's iep. I can't believe it has taken me this long. Obviously, I have always been nervous, which is why I started having DS take his epi-pen with him on his person on field trips. But the entire trip I kept having visions of what could go wrong if some other parent had been chaperoning. Plus the teacher was such a dip... I really just did not feel comfortable with what I saw/experienced.

    Last edited by Irena; 06/07/14 06:18 PM.
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    Originally Posted by Mk13
    and I am hoping (fingers crossed) that maybe he will click with one or two of the high school kids and we might be able to "groom" them into our occasional babysitters. There's always hope, right? smile

    Yup. We have never found a high-schooler who could manage all the needs at our house (we need adults with strong nerves), but you never know...

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    CAMom-- what you do matters so much. I wish that I could clone you.

    My daughter never forgets people that make things easy when they could just as easily make them a misery.

    My daughter did in fact say to her NHS chapter (when they were dismissive of on-the-computer "community service" hours for qualification)-- would we SERIOUSLY want to turn down STEPHEN HAWKING because he can't go do a park clean-up day??

    She gets it. Living this has made her a firebrand for the civil rights of others. So that is one good thing. It's probably the combination of her life-threatening food allergies and being PG, but wow is she something when she sees people doing wrong that way. Like a force of nature. smile



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    Originally Posted by Irena
    Thanks HK. I am going to put this ("ALWAYS permitted to accompany my DS on field trips as an Aide for my child") in my son's iep. I can't believe it has taken me this long. .


    Thanks from me, as well. I am also going to try to put it into my son's 504 plan. I think the school may push back, as I tried to get it in already without really pushing it, and they ignored me, and put something else about field trips, but I personally would feel better about the situation if I was there. I saw earlier this year just how fast anaphylaxis can happen for my son, and I'm not sure the chaperones would get it. Also, Irene's story about the epi not being there scares me to death as the last time my son had anaphylaxis he was eating something that "should" have been safe, but wasn't.

    I have been lucky enough to chaperone the field trips this year, and know how chaotic they can be, especially when the children are eating. Maybe if I make it clear that they don't have to count me as a chaperone, that would help. I think they don't want to be in the position of telling the teacher that they HAVE to make me a chaperone. (Even though, well, the teachers HAVE made me a chaperone, in every instance they can, for both children this year. smile

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    Originally Posted by puffin
    Personally I couldn't be bothered doing birthdays and I don't think anyone else can either. They have popcorn parties for special rewards where they get a handful of popcorn and 10 minutes extra play. The exception would be a fifth birthday at preschool because most kids here Finish preschool on their fifth birthday and start school the next day (or finish the day before and start school on their birthday). The friends kid was at a shared lunch at school as part of some event.

    Just for fun, I counted the emails from the teacher regarding food items provided by parents to be served during class this school year, and there were 45+ of them. This doesn't include parties.

    The kids take snacks from home every day - do they really need that many "special" snacks over the course of the year? And that count doesn't include the times *I* took in treats for the class, LOL. On a few occasions the kids had more than one special snack a day. And there will probably be a few more before school ends.

    I am jealous of those of you that live in areas where the schools aren't like this. Personally I only remember having cupcakes on a very few occasions- usually holidays. Makes me wonder what changed...

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    My children attend a Title 1 school (one is in a GT magnet there, one is not yet) with a high level of child obesity and the amount of food treats is astonishing. At DD's previous school, a charter with many "hippie" parents, food was less emphasized. Her preschool was best of all--fresh fruit for birthdays with optional whipped cream. The kids did not care. I think some parents did. But really, why? My kids get cake at home AND cake at their parties. Do they really need cake at school??? Of course not.

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    Totally apart from the allergy issue, which I agree is a problem, my kids now believe that anything special should be marked with a food treat. I sort of blew a gasket when DD made a fuss about needing something sweet in her lunchbox to celebrate the last day of school. Why? The school had been throwing popsicles, candy, and pizza at them all week. I said no.

    CAMom #193824 06/08/14 07:25 AM
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    Originally Posted by CAMom
    His one request this year "can we please have an end of year celebration that does NOT involve food?"

    I was absolutely bent on making this happen- we had math games, non-food prizes and certificates etc.
    Sounds great. Those interested in creating school policies may be interested the Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs, created by the Center for Disease Control and Prevention (CDC):

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    Today's story around here:

    http://www.wfmz.com/news/news-regio...et-treats-to-dozens-of-students/26377594



    (My son has had a lot of trouble with teacher's aides and so called "para-professionals" personally in our district and this is our state, I wonder do they even screen these people? It looks like this was a 'para-professional' who did this)

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    We had a substitute in Preschool tell DS (then 4.5) when he asked if he can the treat the other kids had "one or two won't hurt you" ... thankfully he didn't have any ... they were full of allergens he's severely allergic to! So, what can I say. Schools lost my trust long time ago. I know some administrators and teachers try but what good is it when the others don't?

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    So glad this thread was not closed... because I need some advice! So I requested that I or my DH be permitted to accompany DS on field trips as an aide considering his life-threatening allergies. Of course, principal just can not say "yes" to anything I request. I have to admit I am a bit surprised as the parents of DS's friend with diabetes accompany him on every trip but I guess it is more difficult to deal with that than anaphylaxis.

    Anyway, principal proposed the following: "We could place in the IEP that DS be assigned to the group that his teacher will personally supervise when on field trips. While the entire staff receives annual training on the use of an epipen, I would further add in the IEP that his teacher would receive a follow-up individual training session with the school nurse. In addition, the two building substitutes would receive the individual training as well in the event that the teacher was absent. Further, we can write in the IEP that the school nurse will see the teacher on the morning of the field trip to personally give him/her the epipen and to review directions for use."
    I guess that sounds good, no? Is that what the 504s usually contain? I would feel better with DS being with his teacher's group - the volunteer moms quite honestly are not great. But that also depends on whether or not I like DS's teacher! I don't know what do you all think?

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    Irena, if followed, that plan sounds better to me, because it would mean that I didn't have to rearrange my life to go on all the field trips. But there may be something missing that I am not seeing. In particular, does training on the epipen include training on how to recognize anaphylaxis? Is that part of what the school nurse would go over with the teacher? Do you trust the school nurse?

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    What Elizabeth said, basically.

    I'd ask "why not" to the provision that a parent CAN accompany your child. There may well be field trip locations that you're simply not comfortable otherwise. The details really matter, unfortunately. Anywhere that I know or strongly suspect that an allergen is present, I wanted 1:1 adult supervision with my child, and anywhere remote/crowded/chaotic, I was also going to want to attend WITH her, just because those are situations that make recognition, treatment, and obtaining emergency medical assistance far more challenging. They also make retreat from a dangerous situation more difficult-- that's my #1 reason for wanting to go on field trips, actually. I spot risks that other adults do not, and I'm way better at "PREVENTION" than they are.

    I'd push back on it, truthfully. It's probably not okay for them to REQUIRE you to attend, but if you want to on a case-by-case basis, frankly, they ought to WELCOME you. They're fools not to-- I'd interpret the fact that they think this is necessary for diabetes management and not for anaphylaxis as an indication that they are not completely convinced of what they're trying to manage. That's just me, though-- they don't seem properly intimidated enough to really have full comprehension. Two words for them. Nathan Walters.

    What if your child SHOULD require medical treatment during a field trip, as well-- what does your 504 plan say about that? Who accompanies your child-- and what happens to the other kids in his group? See the problem there?

    So where is your child's epipen ordinarily? If it isn't in the classroom in the teacher's care USUALLY, then the field trip adds a second dimension of "unusual/break from routine" to things. It doesn't for you as a parent, since you're used to carting them around with you, and unlikely to set them down, forget them, etc.

    Might be worth considering whether or not having the teacher have a "classroom set" of Epipens is a good idea on a more routine basis.


    I'd also ask who is (ordinarily) supposed to determine whether or not to administer epinephrine during the school day. Get that one in writing in your 504 plan. I'm betting that the nurse is involved. Well, in that case, why would they want a less rigorous method for a field trip, eh? The reason that I suspect this is that this would be the prime reason why Suzie with T1D has her mom or dad "invited" on field trips-- my guess is that diabetes is usually "nurse-managed" because classroom teacher(s) have said "Look, I'm not a nurse, I'm a teacher!" Well, recognition of anaphylaxis is not any cake walk, either-- something that I might point out to the 504 team. Ordinarily, no problem if the classroom teacher has medically trained backup (school nurse) IN the building with them, but that isn't true on a field trip.

    I mean, hey-- if they WANT to assume the greater liability after you've generously offered to fill in for the nurse's expertise... well, you're just a parent, after all... but wow. Sure SEEMS like it'd be a lot less for the teacher to worry about when s/he is already busy with the field trip itself, though...

    wink

    (Yes, I usually get what I want.)

    Oh, and Sub + field trip? That scenario is an absolute NO WAY from me unless a parent is along. The adult that is in charge of evaluation and treatment HAS to be someone that your child knows and trusts, and also has to be someone that can recognize if something is "off" about your child-- a sub is very unlikely to be that person.


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    When DS5.10 was still enrolled in school, I insisted on his Epi being ALWAYS with him no matter where they went (library, gym, outside, etc.). I wanted it in his backpack but at the same time didn't want him (or other kids) being able to open it on the bus or in other places and hurting themselves. So I ended up putting it in a pocket in his backpack that I could put a small 4 digit code lock on and all the adults starting from the bus driver to the principal had the code as well as instructions from me to rip the pocket apart if they had to get to it and couldn't deal with the lock. He's been homeschooled for some 6 months now and we still have that lock on his backpack anywhere we go.

    Our friends know all about DS's allergies and yet THEY still mess up at times. I have only ONE friend I know I could really trust and have DS spend couple hours with, maybe even overnight. If I can't trust our own friends who've known DS well for the last 5 years or so, how can I trust a stranger taking care of my son on a field trip? It's not that they wouldn't mean well, but they simply don't have the experience to cover all the bases. So I would still want to be present during just about any trip.

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    Originally Posted by HowlerKarma
    What Elizabeth said, basically.

    I'd ask "why not" to the provision that a parent CAN accompany your child.... It's probably not okay for them to REQUIRE you to attend, but if you want to on a case-by-case basis, frankly, they ought to WELCOME you. They're fools not to-- ...Two words for them. Nathan Walters.

    I know, right? You'd think they'd breathe a sigh of relief! His response makes me wonder what THEY think I "push" for. I think they think I bring this stuff up for ME ... like I am 'fighting' for me. And that this is all about power. It IS all about "power" FOR THEM. For ME, it really is all about my son. This just makes it blatantly obvious to me they do not give a crap about my kid and they actually completely lose of sight of what's important - when confronted with any of this it's pretty much never really about my son. It's about power. Do they think I am someone want to get go on free school trips? Like this is for me? Like I haven't been to these places or won't find the majority of this stuff a bit boring?

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    Sadly, my experience is that with some school administrators, teachers, and other parents... the answer is "yes."

    Which is ludicrous, as you've pointed out.


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    I might be one of those parents who exaggerates her kids' food allergies.

    The list of their known food allergies is 2-page long. Mild reaction would be eczema for at least a week (with the possibility of infection) or severe consequence of going to the ER.

    If I am not sure about whether my kids are allergic to a certain type of food, I usually err on the side of caution.

    Yes, I have gotten comments even from the grandparents. I would rather be proactive than reactive.

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    Whoahhhh.

    Okay, now to figure out how to make it safe for DD15 to live in a dorm for a week with the rest of her research group while they visit a regional research powerhouse later this summer.
    eek Minifridge and mini-microwave.


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    Have you tried to talk to the dorm/food service? A number of schools provide small kitchens for kids who have severe food allergies. Is it going to be possible for her to get a mini-fridge for this week? Many dorms have lounges with refrigerators & microwaves. Sounds like you need to research what the school has available. I haven't been reading this thread too closely since I am lucky enough not to have kids with food allergies, does your daughter have problems with trace amounts of food? Can she store/prepare food in a kitchen that might have her allergens around. By 15 I assume she is very well aware of the details of her food allergies.

    I have run a scout troop and had to dealt with kids who had severe food allergies. I don't understand the attitude of the principal above. Isn't the goal to NOT need the epi pen. So shouldn't his plan be to make sure that the teacher is trained, and policies and procedures are in place to PREVENT an allergic reaction.

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    Hi all. Thank you so much for your help! I responded to principal with a paraphrase of some of HK's post. And he responded with 'fine if you want to attend you can, makes no difference to me.' When we can't attend DS will be in the group supervised by the teacher and she will personally be given the epi-pen and instructed again prior to the trip. So whew... I am just kind of embarrassed I didn't push for this before. Honestly, I was never permitted to chaperone any trip prior to about a week ago (end of second grade) so I had not truly realized that DS is just sent off with some random mom volunteer who may not even know DS has a life threatening allergy! It really hit me at the field trip that I was finally permitted to chaperone that this was not a very safe arrangement.

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    Glad that you got it worked out, Irena!! smile


    We're going to send DD with a thermo-electric cooler that she can use as a personal mini-fridge, and as the time gets closer, she'll either need to pick a roomie that is cool with food restrictions, or room as a single if that fails.

    She'll be fine, I know. It's just an extra layer of "scary" when they are this young and this vulnerable. Luckily, this is the same research group that she worked with all last summer, so her allergies are just a fact of life to them all at this point.

    DD is elated about this-- she was afraid that the grant would preclude her working this summer b/c of her age.


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    Thanks so much for all of your help with it, HK!

    Originally Posted by HowlerKarma
    We're going to send DD with a thermo-electric cooler that she can use as a personal mini-fridge, and as the time gets closer, she'll either need to pick a roomie that is cool with food restrictions, or room as a single if that fails.

    She'll be fine, I know. It's just an extra layer of "scary" when they are this young and this vulnerable. Luckily, this is the same research group that she worked with all last summer, so her allergies are just a fact of life to them all at this point.

    DD is elated about this-- she was afraid that the grant would preclude her working this summer b/c of her age.

    This is great! I'm happy for your DD!

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    Great news Irena and HK! Love to hear you've been successful in securing safe arrangements for your kiddos. smile


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    from last year, but kind of interesting.

    http://www.nbcnews.com/health/body-...ut-cancer-his-peanut-allergy-f8C11566377

    I don't think this sort of thing will ever become mainstream, but...if given the choice, would you consider it? To me, it seems like much too great of a risk, but then again, I (and my kids) don't have a life-threatening allergy. I was curious the perspective of someone actually dealing with this every day....would it be worth even considering?

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    The lifelong sequelae of dealing with a bone marrow transplant as a reboot seems to offset gains in food allergy, honestly.

    The other thing to bear in mind is that people have trouble enough getting BMT's when they are literally going to die without one.

    There is a lot of experimental treatment now crossing over to clinical practice. Some of that is quite controversial at the moment-- most of the leading experts in food allergy (worldwide, mind) believe that such oral desensitization protocols are dangerous and not ready for clinical practice, but they do seem to work well for some (maybe even majority) percentage of patients.

    There are troubling reports emerging from the research studies, though, that indicate that not everyone can hold tolerance, and that it may NOT be 'normalizing' for the immune system in all patients-- even among those that can tolerate the protocol in the short term (well, it's like allergy shots, so it's pretty long term as treatment regimens go).

    Interesting stuff, to be sure. But scary, when you dig into it-- I feel very fortunate that we have the kind of allergist we do, and that he is on a first-name basis with some of the top researchers in the world. He picks stuff up early, and warned us off of this (in light of my DD's particular history, she seems on an anecdotal basis to be a likely disaster under such a protocol) about four years ago when it started to get hot with clinicians eager to to SOMETHING for patients.



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    MoN, that is precisely it:

    How difficult is it to tell your child that even if your teacher assures you that the food is verified safe, it still might not be safe. Even if the teacher feels like she went through a lot of work for YOU and you feel like you should eat it, you go ahead and hurt the teacher's feelings and decline.

    You learn that you must do this not only with teachers, coaches, Santa Claus, etc. etc. etc.

    but more than occasionally, even with VERY close family friends-- and family.

    You can imagine that HG children are pretty good at connecting the dots there.

    The problem is that to a 4yo, it's a pretty horrifying set of bare-faced facts to actually process, what this actually MEANS.

    frown


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    Originally Posted by master of none
    Just had a school party where the teacher had called around to make sure she got food that was appropriate for all of the kids. Turns out the people who answered the questions on the phone were wrong.

    I hope no one was hurt.

    I'm not sure I understand who the teacher was calling? Was she calling parents or food manufacturers or food suppliers? Students with food allergies should have a list of safe foods on file at school. I would trust parents to know what is safe for their child. The gotchas come with things like calling a food supplier (for instance, our school district can't guarantee ingredients in some of the products they use because the supplier they buy from changes ingredients without informing them). Things like that. Or perhaps she was talking to people who weren't invested in giving a correct answer or who don't understand food allergies - and the reality is, those people are out there, so those of us dealing with food allergies have to do our best to make sure we're verifying food safety ourselves as much as possible or that a reliable person is making the determination. Which is why I'm wondering what "calling around" meant?

    Quote
    I wonder if schools have a list of procedures for teachers to follow. If they don't of course, they should!

    Our schools have procedures re what foods can be offered, what foods are restricted based on allergies in the classrooms, and what foods are restricted based on health initiatives for all students (our schools have limits on sugar content etc for classroom treats and parties). I haven't seen an official procedure for how to verify a food *doesn't* contain an allergen. Maybe I'm the outlier here, but that's somewhat ok for me as a parent of a severely IgE-allergic child with multiple food allergies. My dd knows how to read labels, and how to assess whether or not the label is trustworthy (i.e. is she reading the label on a packaged item that's never been opened or is she reading a label that a parent wrote on a home-made food item, and is that a parent she knows would include everything or someone she doesn't know well so she might not know how allergy-aware they are). Younger students aren't going to be able to make those assessments, but there parents are able to. JMO, but I wouldn't want the decisions about what is safe or not left up to my children's teachers, especially in early elementary. Too much responsibility for the teacher, and to be honest, and although not many, some teachers just don't care and/or don't believe food allergies are real.

    I think one thing that has caused the largest challenge for me (as the parent is a societal thing - people *want* to be able to give children food as treats, as reward, as whatever, and they want it to be inclusive. It's so easy for me as a parent to just send in food for my dd and not have to even be in the situation with a class party where food is being given out and a teacher needs to make sure it's "safe for all". Well-meaning people want to be inclusive and that's wonderful, but otoh my dd is very used to bringing her own food and she's downright ok with it.

    (sorry I started to ramble there!)

    Quote
    How difficult is it to tell your child that even if your teacher assures you that the food is verified safe, it still might not be safe.

    Well - it may feel difficult when you're starting out and your child is young, but it's also a process that I suspect most kids with food allergies or health challenges go through - eventually our kids will figure it out for themselves that a teacher's decision can't always be trusted - whether it's due to the best of intent but lack of information or whether it's due to lack of caring on the part of the teacher (or whoever). My dd started noticing those nuances from the time she was in kindergarten and she doesn't implicitly trust any one person or any one situation (except for parents and very close adult friends she knows well). And that's been good for her in terms of survival tactics - she knows she could die and she's taking care of herself. I think it may feel sad or tough for people like myself as a parent who haven't lived with that reality, but it's simply a part of her life to her. Hope that makes sense.

    Quote
    Even if the teacher feels like she went through a lot of work for YOU and you feel like you should eat it, you go ahead and hurt the teacher's feelings and decline.

    Yes, you decline. You always decline unless you are 100% certain it's safe. You can decline politely, nicely, graciously - and you can teach your child to do so. But that's part of what you do when you're living with a food allergy.

    Quote
    Apparently we need to train teachers to NOT call, but to look for the info on ingredients in writing on websites.

    I wouldn't even say that's good enough - I would only trust what I saw on a label on the food's package from the manufacturer. Websites can be out of date, and ingredients do change. Just ask my dd about that wink

    Best wishes,

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    Originally Posted by HowlerKarma
    The problem is that to a 4yo, it's a pretty horrifying set of bare-faced facts to actually process, what this actually MEANS.

    frown

    Totally horrifying. OTOH, I think that one of the singular best things that ever happened with our dd on her food allergy journey was when she accidentally (as in, turned the tv on when none of her parents were paying attention) watched a documentary on PBS where a child had an anaphylactic reaction and almost died... that scared the heck out of her but also gave her the reference point that really helped her become a very aware and conscientious protector of her own health at an early age. Now that she's almost a teen she is far and away her own best advocate - even more solid than her very stubborn and not easily intimidated mom smile

    polarbear

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    Originally Posted by Marnie
    I don't think this sort of thing will ever become mainstream, but...if given the choice, would you consider it? To me, it seems like much too great of a risk, but then again, I (and my kids) don't have a life-threatening allergy. I was curious the perspective of someone actually dealing with this every day....would it be worth even considering?

    Way too big of a risk from my perspective. I suspect my dd would tell you way too big of an inconvenience too! I think that although there are times that dealing with food allergies is inconvenient and can be time-consuming (like today we're having a bit of a "time" preparing for an away-camp for dd who has some rather unusual foods she's allergic to), but in day-to-day life it's just one of those things for her that's not really ever on the radar - she eats what she eats and avoids what she avoids but doesn't have to invest much time thinking about it. Its sorta like putting on her glasses in the morning and brushing her teeth to make sure nothing gets in her braces - part of her reality but not something she thinks consciously about much.

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    Yeah-- the real problems for us (socially) are almost always as a result of one of two things:

    a) people who just plain don't give a rip about inclusion-- or even safety and eat whatever they want, whenever and wherever they please,

    and, paradoxically--


    b) those who are AGGRESSIVE about feeding DD (or me) even in the face of gracious, gentle, and steadfast refusals from us. They make us go there* with them.

    * "there" being "No, as a matter of fact, much as I like you-- NO way am I putting my life in your hands, because I don't trust you that much."


    There is no way around the fact that this is the baseline issue. I don't trust most people with my life-- and neither does anyone else, really, when you stop and think about it.

    But insisting on feeding someone like my DD? This is like being aggressive about doing some kind of surgical procedure on her... I mean, how vastly intrusive and inappropriate would THAT be?

    Sorry-- I know that you have complete confidence in your ability to perform a tonsillectomy, but please understand that as much as I like you... um... I'm still thinking this doesn't make you a surgeon!!

    The difficulty is that EVERYONE eats, and most people cook to some degree, which in their minds translates into an ability to do this perfectly well.

    They're wrong. At least with people who are at the most sensitive end of the distribution, this is NOT a beginner project, finding/preparing/checking on safe food. We don't even have some allergens in our house at all-- and my DH and I are both highly trained chemists with decades of laboratory experience. So look, if WE think that even WE can't manage it... why on earth would we trust someone else to safely prepare food for DD in an environment that we wouldn't trust ourselves in??

    Hint: we wouldn't.

    So yeah-- no offense to people in my life who have sometimes gone to extreme measures to try to feed my DD (new pans, buying new flour, etc.), but I know just how easy it is to make a mistake in a single microsecond of inattentiveness.


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    The level of continuously changing complexity for someone like my DD is hard to overstate-- for example, even from manufacturers we trust to label well (we can't just rely on what labels say, even-- not mostly), that can change in a heartbeat.

    An example:

    When Barilla began test-marketing their egg-containing pastas (the whole grain varieties) about 7-8y ago, my DD knew. How? Well, the label hadn't changed, but she started getting random hive breakouts from some boxes of the regular (non-eggy) pasta. This took us a while to track down, because at that point, they weren't mass-marketing the stuff yet, so we didn't know it existed. We were puzzled, because Barilla had been a completely egg-free facility (and one of the few in N. American markets, btw).

    Sure enough, about 9 months into this, they did their roll-out-- and about a year later, finally changed the packaging on their blue-boxed pasta to reflect the shared lines.

    She's had similar experiences with any number of products that WERE "safe" from contamination caused by shared production lines... until they weren't. We've also been burned because manufacturers will LIE TO YOU on the phone!!

    So you'd better believe we pay VERY close attention to who makes what and in what kind of packaging. We pay close attention to the labeling policies of various companies, (No to Kraft, yes to Keebler, Maybe to General Mills and Kellogg's-- it is VERY VERY complicated).

    We buy a LOT of low-processed/unprocessed foods-- because there is no way to match them in terms of safety. BUT-- any processing step that occurs in someone else's kitchen, or around an allergen-- renders safe food unsafe.

    Conveying all of that is virtually impossible. Not everyone can understand it.



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    Based on these two comments, I have a question:

    Originally Posted by HowlerKarma
    BUT-- any processing step that occurs in someone else's kitchen, or around an allergen-- renders safe food unsafe.

    Originally Posted by HowlerKarma
    So yeah-- no offense to people in my life who have sometimes gone to extreme measures to try to feed my DD (new pans, buying new flour, etc.), but I know just how easy it is to make a mistake in a single microsecond of inattentiveness.

    Would having those people over to your house to prepare a dish for your DD in your kitchen, from your known-safe ingredients, and with your equipment satisfy their need to give her a food treat?


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    I will be honest, I don't get why people are so obsessed with having to make any child something to eat. Maybe it is just a side effect of having a sister with friends with all kinds of allergies and food fads, my mother was always glad to step back - if my sister's friend's mother said to buy this brand of XXX, or serve her only what comes with her and nothing else, my mother followed it.

    Then again, I don't like to cook so I guess I am in the minority folks who does not feel a driving need to make sure that I can make something that is edible (i.e. without allergens) for whoever eats it. I am just as happy if they say don't cook, bring something else (flowers, balloons).


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    We love to cook and love to eat. But as I always say when DD complains that she's hungry and dinner's a half an hour away: "It's not like there's a famine on."*

    DDs life is like a rolling buffet, far beyond the bounds of what's logical or reasonable. Every week is some kind of celebration and the last week of school, it seemed like every one of her classes had some kind of unhealthy treat. Sporting events always involve an after game snack (lest the little darlings perish on the 15 minute drive home -- or to the nearest drive through. And every parent she comes into contact with seems to want to feed her. Any expression of hunger is greeted with a reaction of horror by adults in the vicinity.

    A busy day starts to look like a Hobbit's meal plan: Breakfast, second breakfast, brunch...

    A friend of DDs is pre-diabetic and needs to avoid refined flour and sugar, yet every place he goes he's confronted with temptation. And then we hand wring about childhood obesity.

    While this trend probably explains the urge adults have to press food on every child within fork range, it has to be a nightmare for parents of allergic children.

    If a child has extreme allergies, I'm happy to NOT feed them. I want the child and the parent to direct that conversation and experience.

    * Of course I realize that in places there IS a famine going on and that even in the US some children go to bed hungry... which makes the context even more upsetting IMHO.

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    Originally Posted by aquinas
    Based on these two comments, I have a question:

    Originally Posted by HowlerKarma
    BUT-- any processing step that occurs in someone else's kitchen, or around an allergen-- renders safe food unsafe.

    Originally Posted by HowlerKarma
    So yeah-- no offense to people in my life who have sometimes gone to extreme measures to try to feed my DD (new pans, buying new flour, etc.), but I know just how easy it is to make a mistake in a single microsecond of inattentiveness.

    Would having those people over to your house to prepare a dish for your DD in your kitchen, from your known-safe ingredients, and with your equipment satisfy their need to give her a food treat?


    Honestly? There are not that many people I trust enough to turn loose even in MY kitchen. I have pretty big control issues about my kitchen. Seriously.


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    I think hunger has gone from being something normal to something to be immediately fixed. Maybe because it is one of the few things we can fix? And of course if you feel you need to fix hunger immediately you find yourself using unhealthy food.

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    Originally Posted by HowlerKarma
    I don't trust most people with my life-- and neither does anyone else, really, when you stop and think about it.

    HK, the level of vigilance your family and especially DD must live with has to be so wearying. It makes her achievements-- and yours as her advocate-- even more impressive.

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    Well, we do trust people to drive us and our kids around. Sorry. Devil's advocate. I realize it isn't the same, since generally, people know how to drive. At least kinda.

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    Originally Posted by ultramarina
    Well, we do trust people to drive us and our kids around. Sorry. Devil's advocate. I realize it isn't the same, since generally, people know how to drive. At least kinda.

    Not the same because normal, adequate driving doesn't kill people, whereas their normal cooking might well kill HK's DD.

    It's the fact that other people have to do something really out of their ordinary that makes it so hard for them, and so unreliable for the allergic.

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    Exactly-- and while I trust an airline pilot to be able to fly me to my destination on a commercial flight, and an anesthesiologist to be able to wake me right up at the end of a routine colonoscopy... I definitely don't trust my neighbor who is neither a pilot nor a physician to do either of those things. wink Even if he were REALLY persuasive. Nahhhhh-- but it's just like a big lawnmower that flies, right? How hard can it be? I've watched a lot of movies about flying airplanes, and I know all about it... eek

    There's a certain specialist skill set involved, if that makes sense. And while it might SEEM as though it should be easy to fly a 747, or monitor vitals with one hand on a digital regulator... and while sure, there are protocols to follow for both activities, it's just a LOT to ask someone to get right on the very first attempt.

    What is sad is that some people really can't understand that. I mean, I understand that my kitchen would be a nightmare for a person with a different food allergy-- we do a LOT of cooking from scratch, and some things are really everywhere in my kitchen. So I would make that crystal clear to another person (in fact, I do-- to friends with celiac, for example)-- I'm not pushing my food on them, but I'm open about what goes into what I've made (what goes in on purpose, anyway). No way could I make something truly free of all wheat contamination at this point. The difference is that I'm experienced enough to know better. Most people are not.

    In fact, the pushier people are, the less I trust them. DD had that one figured out when she was only five or six years old, in fact.



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    Originally Posted by HowlerKarma
    Nahhhhh-- but it's just like a big lawnmower that flies, right?

    I assume you're referring to the scope, no? wink


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    Originally Posted by HowlerKarma
    Originally Posted by aquinas
    Based on these two comments, I have a question:

    Originally Posted by HowlerKarma
    BUT-- any processing step that occurs in someone else's kitchen, or around an allergen-- renders safe food unsafe.

    Originally Posted by HowlerKarma
    So yeah-- no offense to people in my life who have sometimes gone to extreme measures to try to feed my DD (new pans, buying new flour, etc.), but I know just how easy it is to make a mistake in a single microsecond of inattentiveness.

    Would having those people over to your house to prepare a dish for your DD in your kitchen, from your known-safe ingredients, and with your equipment satisfy their need to give her a food treat?


    Honestly? There are not that many people I trust enough to turn loose even in MY kitchen. I have pretty big control issues about my kitchen. Seriously.

    Fair enough. I can respect that.


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    Originally Posted by ultramarina
    Well, we do trust people to drive us and our kids around. Sorry. Devil's advocate. I realize it isn't the same, since generally, people know how to drive. At least kinda.
    No, we don't, at least not willingly or without anxiety. I hate any of us being driven by someone who doesn't drive for a living, and avoid it when I reasonably can. DH and I both have licences but don't drive; in my case, this is because I realised I was always going to be aware of how much of a role luck was playing in our not having an accident. I don't think I was a particularly poor driver; just had inadequate illusory superiority in that domain.

    Quantitatively, those of you with highly allergic children may be running much higher risks when you trust other people with your children, but qualitatively, I'm guessing the feeling is fairly similar to how I feel when I see DS driven off by someone I don't think of as an excellent driver. Thinking that it may be like that but far worse... well, you have my deep sympathy, and I promise never to be offended when someone doesn't trust my food!


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    Ivy #194448 06/14/14 06:53 AM
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    Originally Posted by Ivy
    We love to cook and love to eat. But as I always say when DD complains that she's hungry and dinner's a half an hour away: "It's not like there's a famine on."*

    DDs life is like a rolling buffet, far beyond the bounds of what's logical or reasonable. Every week is some kind of celebration and the last week of school, it seemed like every one of her classes had some kind of unhealthy treat. Sporting events always involve an after game snack (lest the little darlings perish on the 15 minute drive home -- or to the nearest drive through. And every parent she comes into contact with seems to want to feed her. Any expression of hunger is greeted with a reaction of horror by adults in the vicinity.

    A busy day starts to look like a Hobbit's meal plan: Breakfast, second breakfast, brunch...

    A friend of DDs is pre-diabetic and needs to avoid refined flour and sugar, yet every place he goes he's confronted with temptation. And then we hand wring about childhood obesity.

    While this trend probably explains the urge adults have to press food on every child within fork range, it has to be a nightmare for parents of allergic children.

    If a child has extreme allergies, I'm happy to NOT feed them. I want the child and the parent to direct that conversation and experience.

    * Of course I realize that in places there IS a famine going on and that even in the US some children go to bed hungry... which makes the context even more upsetting IMHO.


    Didn't want this to get lost in the shuffle-- love this observation.

    I have to think that most parents are simply not even aware of how often their kids are being fed by-- well, by pretty much everyone in their lives.

    I have an infamous line-- it's one that cracks people up, but it's also something that I recall actually asking with some wariness when my daughter was about four.

    "So-- and pardon me if this sounds peculiar to you-- will the children be having any snacks or anything while they are dissecting the OWL PELLETS??"

    grin Experience suggests, however, that as ludicrous as it seems, that was not a foolish or paranoid question. frown


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    One of the more surreal experiences that I have regularly re my DDs diet is having her come home from a friend's house and the mother always commenting how she worries that my DD doesn't each much (I send all of DDs food). But isn't it wonderful how healthily she eats. What blows my mind about this is that the mother in question is a dietician with a morbidly obese child... My DD eats enough to maintain a perfectly healthy weight, she's slim but not skin and bones, and her diet is restricted but se gets plenty of treats, seriously DD would sit and eat cream with a spoon given the opportunity. She would eat only treat food (that it is possible for her to eat), given the opportunity, but she gets that most of what she eats needs to be nutritious.

    It terrifies me that a woman who thinks my DD eats too little (but is magically a healthy weight) is out there "helping" people who need dietary advice.

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    Originally Posted by puffin
    I think hunger has gone from being something normal to something to be immediately fixed. Maybe because it is one of the few things we can fix? And of course if you feel you need to fix hunger immediately you find yourself using unhealthy food.

    I don't see any reason to be be dealing with the behaviour of a hungry child, haven't from birth. Why go through all the crying and fighting and shouting and drama just so you don't have to get off the couch and feed them when you could just feed them and deal with conflicts like rational people?

    You may choose to feed your kids unhealthy food, but there's no need to. Many many healthy foods can be prepared in less than a minute, from fruit to cheese to bread to hummus to baked beans or any number of other foods. And if you were bothered to watch your children, you might find they have a regular pattern or that plummeting blood sugar has telltale signs which give you plenty of notice that they're about to fall apart so you don't need to rush to get food into them. Morning and afternoon snacks are sterotypical for a reason, but YMMV.

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    Originally Posted by Tallulah
    ...so you don't have to get off the couch and feed them when you could just feed them and deal with conflicts like rational people?

    You may choose to feed your kids unhealthy food, ...

    ... And if you were bothered to watch your children...

    Really? This is what you extrapolated from the thread?

    Because what I extrapolated is:

    1. Children are fed frequently outside the parents' locus of control.
    2. This can cause health and appetite issues.
    3. It would appear to be particularly challenging for children with serious allergies.

    Ivy #194682 06/17/14 10:20 AM
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    Originally Posted by Ivy
    2. This can cause health and appetite issues.


    When my daughter was in daycare, they used to give us these little papers every day with a list of everything that she had done and everything that she ate that day. It was really convenient when we were trying to track down food sensitivity issues. Except that they didn't bother to write it down when they gave them an extra snack at 5PM, because that one wasn't state-mandated. And the daycare director was utterly bemused that I was upset about that.

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    I don't see any reason to be be dealing with the behaviour of a hungry child, haven't from birth.


    Tallulah, I'm not really even sure what to say to this. Have you read anything in this thread? The problem for my family isn't that any ONE person feels free to ignore "No food or drink" signage as some kind of infringement upon their rights-- but that so MANY people do. ANY location seems to be fair game for an impromptu picnic.

    Food that appears unexpectedly and at times/places where it has NO business being (museums, stores, workshops, etc, etc) constitutes a barrier to disabled persons like my child. Yes, her limitations are significant enough (and then some, frankly) to be considered a disability.

    If I had a nickel for every time someone has snidely asked us how we "do _______ if she's so allergic," I'd be a very wealthy woman. Very wealthy. Mostly, the answer is "we don't. At least not the way that you're familiar with this activity." She saw her first movie in a theater when she was elementary aged, and even then, there were a lot of little particulars involved. Her first "sleepover" was when she was 13 years old.

    So yeah, it's not that I ask other people to do stuff so that I don't have to. It's because ALL that she and we are capable of doing just isn't enough sometimes. And yes, on SOME special occasions, I feel that it's not too much to ask of other parents to make themselves or their kids "go hungry" (or at least not eat allergens in her vicinity-- and wash their hands) so that my child can do things like...

    visit a public library
    attend a museum event
    see a play or concert
    participate in a team sport
    try on prom dresses at a boutique
    go to a book signing
    attend a ceremony intended to honor her in some way
    make a purchase at a toy store
    attend her own high school graduation ceremony

    If none of that is "reason enough" to think twice, then I'm at a loss, honestly. Is it that people don't believe in my daughter's reality? I'm truly not sure. I can't quite think that anyone who DID completely understand it would actually think that pulling out a snack in line at the bank was worth her life, when compared to forcing their unhappy three year old to wait ten more minutes.

    frown

    For once and for all-- what other people EAT and DO with food can and regularly DOES impact food allergic people. Their lives are really hard already.

    I see this as being very much akin to resenting the "empty" parking spaces reserved for those with handicapped plates/placards. Sure, they are usually prime parking spaces, and most of the time, it wouldn't hurt a thing since there are usually several of them empty either way... it would sure be much more CONVENIENT to park there-- particularly during inclement weather. But I see a reason not to do that. It doesn't seem to be too much for me to be (very slightly) inconvenienced in order to make someone else's life just a little less harsh. I am reminded, as I walk past those empty parking spaces, that I don't have to consider a mobility impairment all of the time.

    I am really not trying to start an argument about this so much as explain what life is like when you live as we have to. I'm just asking that anyone reading this accept that for some people, this IS reality. It's not exaggerated or made up, and we very definitely didn't CHOOSE to have this happen to us.


    I cannot count the number of times when I've seen that light finally dawn on an individual-- when they watch us walk away from something that they can see means a lot to us. It's always "Ohhhhhh-- I had no idea..." I'm bemused by that. What? No idea that.... I wasn't just making it up?? that we really meant it? or just that we really do see the choice as 'is this worth DD's life?' I have no idea, but that look-- in someone that I've attempted to talk to at length in an effort to work something out? It angers me. Because it's crystal clear in that moment that they've just been blowing smoke at me, and I've been wasting my time and energy on someone that can't/won't/doesn't listen. frown

    I've had that sensation again and again and again with DD's school over the years. Most recently at her commencement. (Which she wound up not attending, btw.)




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    Originally Posted by HowlerKarma
    ...

    So yeah, it's not that I ask other people to do stuff so that I don't have to. It's because ALL that she and we are capable of doing just isn't enough sometimes. And yes, on SOME special occasions, I feel that it's not too much to ask of other parents to make themselves or their kids "go hungry" (or at least not eat allergens in her vicinity-- and wash their hands) so that my child can do things like...

    visit a public library
    attend a museum event
    see a play or concert
    participate in a team sport
    try on prom dresses at a boutique
    go to a book signing
    attend a ceremony intended to honor her in some way
    make a purchase at a toy store
    attend her own high school graduation ceremony

    If none of that is "reason enough" to think twice, then I'm at a loss, honestly. Is it that people don't believe in my daughter's reality? I'm truly not sure. ..
    frown

    For once and for all-- what other people EAT and DO with food can and regularly DOES impact food allergic people. Their lives are really hard already.
    ...



    I cannot count the number of times when I've seen that light finally dawn on an individual-- when they watch us walk away from something that they can see means a lot to us. It's always "Ohhhhhh-- I had no idea..." I'm bemused by that. What? No idea that.... I wasn't just making it up?? that we really meant it? or just that we really do see the choice as 'is this worth DD's life?' I have no idea, but that look-- in someone that I've attempted to talk to at length in an effort to work something out? It angers me. Because it's crystal clear in that moment that they've just been blowing smoke at me, and I've been wasting my time and energy on someone that can't/won't/doesn't listen. frown

    I've had that sensation again and again and again with DD's school over the years. Most recently at her commencement. (Which she wound up not attending, btw.)

    Tell us how not going went down if you can?

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    Originally Posted by HowlerKarma
    ...

    If none of that is "reason enough" to think twice, then I'm at a loss, honestly. Is it that people don't believe in my daughter's reality? I'm truly not sure. ..
    frown

    No, people don't believe. I get severely asthmatic when exposed to cat dander and trust me cat dander is everywhere. Despite my efforts to explain the severity of my allergy, people don't get it until they've witnessed me have an uncontrollable asthma attack from something as simple as sitting in a co-worker's car. They are dumbfounded that there is cat dander in their car even though their cat has never been in their car. I imagine that it is similar for your daughter with food residue but her reactions sound even more severe.

    Similarly, people who have not witnessed someone have a severe allergic reaction to food just don't get it. My son has multiple severe food allergies, though not as severe as your daughter's. It seems he has to ingest it to react so in that way, he is lucky. People don't understand how stressful it is to always have to make all of your own food and bring it with you wherever you go. They don't understand never being able to grab some take-out or go over to a relative's house. We've paid the price for our attempts to see if some of these everyday activities could work. We've seen the results of cross-contamination at restaurants despite telling the waitperson the full list of allergies and grilling them for 20 minutes trying to find one thing on the menu that my kid could possibly eat. We've had well-meaning relatives forget and use an ingredient that they shouldn't. My kid has one bite and throws up for the rest of the day. Traveling is nightmare. We always have to have a place to stay with a kitchen and bring our own pots and pans. Forget attending sleep away camp. The only way I can possibly see it work would be if I drove food up to camp everyday.

    Our school has a no birthday treat policy that DS's teacher decided to ignore this year. I kept my mouth shut as my son dealt with seeing everyone else get home-baked cookies or cupcakes that he couldn't have. He even begged me to let him do a food-challenge so that he might be able to eat a cookie with everyone else. We tried with one of the allergens that the doctor said his numbers had improved to the point where he could try. I watched my kid force himself to eat something that I could tell was making him feel ill in the hopes that his discomfort who be minimal enough that he could fake it on occasion. He threw up in the car and laid in a ball for the rest of the day. When the school administration finally came down on the teacher for allowing treats, I got dirty looks because everyone assumed it was me who reported this teacher even though I did not. I've watched parents force candy bars into my son's hands and tell him not to tell mom, like I'm not letting him have that milk chocolate candy bar with nuts because I am some sort of health nazi! He just brings them home and trades with his sisters or our safe-food stockpile.

    So sadly, my only conclusion is that people really don't believe.

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    Honestly-- commencement was just such a mess-- for SO many reasons.

    I just wish that we'd been able to get information enough to make a reasonably informed decision, but there again-- this is how these things tend to go. You ask all the right questions, but this stuff just doesn't cross other people's minds. They don't connect the dots-- and because they don't, they also tend to not think to tell YOU that there, um-- is a dot there. Even when you ask.

    So there was a lot of chaos, a lot of relatively low supervision, and a LOT of time, some of it crossing meal/snack times. No teenager is going to go from 1pm until 8pm with no food, and the school just never "got" why I was concerned about it at all. They also communicated poorly with catering, had no real plan for having a trained staff member there with my child (but excluded US, too), etc. etc. etc.

    Add in some really unfortunate social stuff with my daughter at the epicenter, and it was just not something that DD felt that she could go through with. It's sad-- but it happens. That is our life, basically. She was a lot less upset about that than most kids would have been. She is used to it.







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    Sorry to hear that Howler. That is really a shame that the school didn't take the situation with her allergies seriously.

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    Originally Posted by Ivy
    Originally Posted by Tallulah
    ...so you don't have to get off the couch and feed them when you could just feed them and deal with conflicts like rational people?

    You may choose to feed your kids unhealthy food, ...

    ... And if you were bothered to watch your children...

    Really? This is what you extrapolated from the thread?

    Because what I extrapolated is:

    1. Children are fed frequently outside the parents' locus of control.
    2. This can cause health and appetite issues.
    3. It would appear to be particularly challenging for children with serious allergies.

    On online message boards the custom is to quote any post you're particularly replying to. If you reread, you'll see that I am replying to a certain post, whose author seems to feel that hunger is a moral issue and that only food which takes hours to prepare can be healthy.

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    Originally Posted by Tallulah
    On online message boards the custom is to quote any post you're particularly replying to. If you reread, you'll see that I am replying to a certain post, whose author seems to feel that hunger is a moral issue and that only food which takes hours to prepare can be healthy.

    Thank you, yes. I'm aware of the custom on online message boards (I run and moderate one myself). That's why I quoted you, Tallulah, because I found your interpretation interesting, to say the least, and was responding to you.

    In any case, this is wildly off topic, so in the spirit of the purpose of the board and the thread: Do the parents here with allergic children think that having a gifted child makes things easier or harder?

    I'm thinking that the ability to comprehend the allergy and understand ingredient lists and the like would make things easier when they're younger. However it also seems like it could contribute to the kind of analysis paralysis or anxiety that gifted kids can sometimes be prone to.

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    Do the parents here with allergic children think that having a gifted child makes things easier or harder?

    It seems to be both.

    A. Early literacy and the ability to grasp consequences is a key component of safety for kids like mine, no two ways about it.

    In addition, like most HG+ children, mine was capable of stunningly adult behavior by the time she was 2 or 3 yo. That translated into the ability to take her ANYWHERE. Which meant that we didn't have to entrust her to a sitter, which meant greatly enhanced safety for her. While weird in the context of normative, yes, my 5yo was in fact far safer coming to work with me in a lab setting that staying at home with a sitter.

    This also meant that we looked far outside the box when it came to family activities-- and child-friendly ones, for that matter. This is how my 6yo enjoyed San Francisco for a week far more than Disneyland. Food allergies + HG+ status = strange and non-normative childhood.

    B. In some ways, worse-- because that high cognitive ability also meant that she understood VERY clearly that, for example, some family members simply cared less about her (or her feelings, even as a young child) than they cared about... their routine. Or their immediate desire for gratification. I have the impression that most children aren't actually faced with just how self-centered, petty, and lazy most human beings are. Not really. Food allergic children have all the pieces presented to them on a silver platter every day-- they just need to assemble them. Obviously those of high intellectual capacity DO assemble them quite young. That leads to understanding that they are not emotionally ready for.

    Why does grandpa care more about ice cream than me? Doesn't he love me? frown


    As Ivy notes, it's also the case that food allergic gifties tend to experience SIGNIFICANT anxiety when they put together two bits of info: 1. I could die from my food allergy, and 2. I will die if I don't eat.

    For most food allergic children, this stage seems to happen about ages 9-11yo. With gifted food allergic children, it can happen far far younger-- as young as 3 or 4. Their emotional coping skills and capacity to work with a therapist are significantly limited at those ages, and the LAST thing that you want is a therapist telling your child that his/her fears about food are irrational. Because-- they aren't.



    As a side note, while I realize that a Dabrowskian view of development is controversial/theoretical, this DOES seem to nicely explain my daughter's apparent emotional development. The problem is that most adults don't make level 4, and because of item B above, DD was forced into that at about age 11. My first post on the forum was, in fact, probably at least partly triggered by a perfect storm of factors leading to a disintegration in this particular view of development.

    The other bit of things is that HG+ kids with a life-threatening, intermittent condition like this tend to have a MUCH better sense of "perspective" than their peers. They are seriously world-weary by the time they are adolescents, and may have limited patience for normative "concerns" that their peers (even bright ones) express.


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    HK, our situation is different, but I see this collection of issues clear as day here too. It produces a remarkable young-old soul.

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    Well said HK and ITA, with one exception - I've seen much of the same happen in young food allergic children who are *not* HG/+... I think sometimes we adults underestimate the depths of feeling, intuition, and connections that all young children are able to make.

    polarbear

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