Gifted Issues Discussion homepage Forums Twice Exceptional Food allergy case

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.

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.

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!

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.

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 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 Just wanted to put out a thought from another food-allergy mom

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.

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. 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.

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.


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.

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! 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.

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.

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.