Oh my gosh. Just need to vent! My DS is fatally allergic to peanuts and lentils. He also has reactions to peaches and nectarines as well (b/c of his pretty sever tree pollen allergy). But we have always eaten shellfish with no problem (and back when he was diagnosed with peanut allergy he was tested for shellfish came up negative). Well, we haven't had mussels in about three months so I steamed some tonight... He had a bad reaction. Like bad. Fortunately, he's fine but we checked everything we made and nothing has lentils or peanuts labeled so we are suspicious it's the shellfish. However, we had sugar snap peas and they are also lagumes so maybe it was that. But it scared the crap out of me. What annoyed me/scared me even more is I heard him go to my husband and say "I'm not feeling good, my eyes feel terrible" (they were swelling up and that's why he felt so badly) and my DH just brushed him off so I called him downstairs to take a look at him and he looked terrible! I just feel like I could lose him at any time! And with people, even family, not taking him seriously! When he says that to me I literally jump. It didn't matter that he had no peanuts that we could identify. Then I worry about him being older and not always having his epi-pen with him. If he is fatally allergic to yet another food/substance I may need some serious therapy ... It just ups his already elevated chances that we could lose him at any time.

I'm so sorry for the food allergy scare. And so glad ds told you he wasn't feeling well and got the epi-pen in time. Be sure to get a replacement Rx epi-pen soon!

You may wish to coach ds to learn to say directly when he doesn't feel well, if it feels like his food allergy and ask for his epi-pen in case it is needed.

I've known kids with some different serious things and they all learned very young to say if it felt like {their known problem, with known action to be taken} or if it felt like something else. Lots of opportunity to discuss vocabulary for different body parts, pains (stabbing, throbbing, dull ache, swollen...) and ways in which those pains in those parts are limiting functioning.

Does he wear a medical dog-tag, medic-alert bracelet, or something similar to indicate his severe food allergies?

One family I know wipes everything down in public places, so that a stray peanutty-fingerprint does not wreak havoc. Based on that, it may have even been something on the outside of the food packaging?


Others have posted about similar concerns, I believe.

Be sure to watch closely for the next 24 hours or so-- biphasic reactions can occur during that window of time, and may be VERY hard to treat (much more so than the initial reaction).

{hugs}

Irena, once when my DD lay writhing on the floor in pain in front of my DH after taking a couple of bites of a soup (that we later learned was run on shared lines with a nut she is allergic to), my own DH apparently asked her a couple of times;

Are you doing okay?

And kept watching television.

She eventually took some diphenhydramine herself (she was older, though-- like 11 or 12), and fell asleep (still on the floor in front of my DH).

I was out somewhere doing something while this was going on.

His explanation is that "she seemed fine to me."

CLEARLY, she should have gone to the emergency room, as she was having agonizing gut pain and difficulty breathing.

I just wanted to reassure you that you're not alone in having the occasionally clueless parenting partner with this stuff. It really does make it seem as though the entire world is out to get them, though. It's so hard to live with that anxiety all the time as a parent.


We also live with a family member with a shellfish allergy-- be aware that what is generally considered "shellfish" is actually more properly termed "crustaceans."

So it is possible that your son is NOT allergic to crustaceans, but IS allergic to bivalves-- different allergy. Luckily, seafood is nowhere near as difficult to avoid as nuts are.

Yikes! I'm so sorry you are having to deal with that. The surprise element (when you think you are serving perfectly safe food) is just awful, isn't it?

Just in case you're not already plugged in, you might also connect with people at Kids With Food Allergies: http://community.kidswithfoodallergies.org/pages/community

Joining is free, and there are some extremely kind people there who have been through what you are experiencing.

Thank you all! Yes, the clueless partners and family members. When it comes to DS saying "I don't feel right" We have to "over-react" every time. And by that I mean really take it seriously, pull him from whatever he's doing and watch him, give him Benadryl (I have given him Benadryl for what turned out to be chapped lips but it's really better to be do that and be wrong than the other way around), have the epi-pen. The whole "well he didn't ingest any peanuts so he must be fine" just can't be a mindset because it seems like this kid can be allergic to anything. (plus things can be accidently and unknowingly contaminated). When I discovered he was allergic to lentils he was 6, we were at my mother in law's house (who knows all about his peanut allergy), she served us lentil soup for lunch which he liked - until about ten minutes in, he put down his spoon and said "I don't feel right - does this have peanuts?" MIL doubled checked ingredients while I got meds. Ds said "I really don't feel right. I'm gonna lay down" (he laid on the couch in front of the tv and mil said "Oh I think you're fine you just want to watch TV" Uh no when he wants to watch to tv he asks to watch tv he doesn't feign illness! Anyway, turned out he was having a reaction. She was really surprised that he was having an actual reaction. When we went to the allergist he was highly allergic to lentils. I worry b/c the Benadryl is still hard for him to give himself - the quick melt tabs are good to carry around but hard to get open when you have fine motor issues (even for me they are) and with his eyes swelling and such it's even harder. I love the new epi-pens though - they talk to you and talk you through administration And they are smaller and less cumbersome!

Anyway, I am thinking now the source of last night's reaction is actually the agave nectar in this protein shake I gave him. Either way, I'll get him to the allergist and get some tests. thanks for the link I would love a place to read and connect with others with the same issues.

Irena, I don't know if you've ever seen this-- but I've found it a very helpful tool for evaluating is-it-or-isn't-it kinds of symptoms, and for knowing what is frankly, er-- very alarming and what is not.

Anaphylaxis Grading Chart

There is more information at FoodAllergySupport's Welcome/Starter Info page

I recommend connecting both with KFA (mentioned above) and also with FAS-- one community or the other seems to resonate well with most people. (Several members here are members at one or both, too. )



My DD, unfortunately, has moved toward symptoms in the respiratory, cardiac, and CNS rather than cutaneous (skin) symptoms as she has gotten older.


Another thing to be VERY aware of is that diphenhydramine (benadryl) really doesn't have much impact on anaphylaxis beyond the "lite" version of things-- I don't want to scare you (or anyone else) unnecessarily, but one should generally regard anaphylaxis as a snowball rolling down a hill-- the ONLY way to stop it is before you reach some event horizon with sufficient momentum.

Please read Why antihistamines won't stop anaphylaxis
and
How epinephrine works to stop anaphylaxis for more details on that.

(Be prepared-- this is some quite heavy-duty immunology and biochemistry if life science isn't your thing.) The point is that it is WAY better to administer epinephrine EARLY-- as early as you're sure that a reaction is probable.

Irena-- You probably already know this but I have read that "pea" allergies are often found in those who have lentil or peanut allergies. They are all related.

I am allergic to all types of peas... I also tested allergic to navy beans. I do not have a peanut allergy but my niece does and I have been afraid to eat lentils because they are so similar to peas. It is important to know that pea protein is often used in dairy-free products and is buried at the end of the ingredients in the fine print. It's a big problem at my house because of the dairy sensitivities my husband and son have and the extra difficulty finding products without dairy or pea protein. Just a little FYI in case this is his issue.

So sorry you've had this scare. I hope you can track down the source soon.

Is it possible to get your husband a reality check without killing anyone?

(potentially, no) My DH has watched our DD nearly die. Several times-- and most often from a source that we've never adequately identified, in spite of fairly vigorous detective work that would make Perry Mason's team proud.

He just somehow has a disconnect in his brain about this. Some people do. It's not that he doesn't listen to ME (and her) and it's not that he's not careful or is disrespectful-- he's not. He just doesn't live in the same head space with it that I do-- and that DD does, honestly. I've occasionally wondered if it isn't the difference between EG/PG and HG, but I'm probably being unfair.

There is a lot of parallel processing and high-speed risk-benefit analysis that has to go on continuously in the background to manage this successfully. Truly. All food everywhere is a risk, all the time, and anywhere that food has BEEN is almost as risky, as are people who might have food ON them and be capable of transferring that food to you somehow.

For most people, that level of vigilance is simply not realistic or sustainable. It's a very good thing that just watching out for sources in food to be consumed is enough for about 99% of people with food allergies. Living the way that we do is for the birds, to be frank. It's hard.

Wow; how horrible, I can't even imagine

"You may wish to coach ds to learn to say directly when he doesn't feel well, if it feels like his food allergy and ask for his epi-pen in case it is needed."
this REALLY sounds like a good idea, if reasonable with a 5 yr old, but then you can't put too much of the burden on them. Ya gotta check.

I do remember when getting a recent allergy shot, turning bright red and trying to politely get the attention of the nurses who were chatting, and finally just saying "I think I'm having a reaction" which completely threw them into overdrive, so it does help to be clear whether a child or adult. (but again, kids are just not always gonna remember to be clear).

That is very scary. I am glad he is okay.

Our allergist told us to not even bother with shellfish. It is so allergic that no one with food allergies should even try it. Another allergist told my sil the same thing about my nephew.

There was an article out a few years back about gifted children being more likely to have food allergies. It can be really scary. Last night at family Christmas there were 3 known anaphylactic foods out. Placed on the table by the grandparents of the two children with severe allergies. Seriously? Grandma and Grandpa know what these children are allergic to and couldn't not serve peanuts, shrimp, and sesame seeds for one stinkin' night? Makes me crazy!

I'm curious if any of you have looked into oral desensitization therapy. I am completing a three-year course of sublingual immunotherapy for environmental allergies. The research looks pretty strong. I also have a friend who completed this for her child with severe peanut allergies with success. She felt overwhelmed by the anxiety of the need to avoid the food.

http://www.medpagetoday.com/MeetingCoverage/ACAAI/29542

There is significant disagreement among top clinicians and researchers regarding the safety of oral desensitization.

In fact, rumor has it that a death earlier this month in Boston was a case in which a "desensitized" child suffered catastrophic anaphylaxis upon ingestion of a serving of the allergen.

ETA: oral desensitization studies have included fatalities, and while there was a LOT of buzz about this 5 to 7 years ago, the problem is that so many severely allergic children don't "hold" a particular threshold dose very well. What this means is that a maintenance dose can-- without warning-- cause refractory anaphylaxis that no medical intervention can mitigate. Pretty significant risk.

Some people seem to do well with OIT, and some don't-- and there is unfortunately no way to know who is in which group (at the moment).

Hugh Sampson has openly stated rather emphatically that OIT for food allergens is not ready for wide clinical use. He is certainly one of the foremost research physicians in the field, world-wide. Our own allergist trained with him, and concurs wholeheartedly-- we've discussed it with him. He feels that our DD is a very poor risk for OIT given her history and how she responded to SCIT for aeroallergens (very high risk-- probably would have discontinued if we hadn't had an expert in desensitization working with us).

I've been hearing the "five more years" line since my DD first anaphylaxed at 11mo of age, by the way. I've quit believing it, myself.

Part of the problem with food allergen desensitization is that there are elements of the allergic response which are not entirely clear. This seems to be unique for food anaphylaxis. The other problem is that some subset of individuals has a wide variance in threshold dose for some food allergens.

That said, I do know that there are several people over at FAS that have talked about their experiences with immunotherapy pretty extensively. Results really vary. Sub-lingual immunotherapy is probably the safest of the current options... but efficacy long term is an open question.

HK, is it correct to say your DD is a highly unusual case, though? I wouldn't think it would be a good idea for someone like her, but for more garden-variety food allergies, perhaps. My friend who did it with her child is married to a hot-shot physician, so I know they did their homework. The child is going on 2+ years with no issues, though it's fair to note that she also outgrew some of her other food allergies.

I find food allergies mysterious and odd. I tested allergic (using skin testing, some reactions were 3+) to a number of foods that I eat regularly. On the other hand I absolutely cannot eat red meat at all without serious GI distress. This doesn't really matter since I am a vegetarian. I think it is possible that I was sensitized by the bite of a Lone Star tick--they are finding this can cause allergy to mammalian meat.

Do you have an allergy to meat or an intolerance to it? My understanding is that an allergy involves an immune response, whereas an intolerance typically involves what could be described as a food poisoning-like response.

ETA about the 3+ reactions to foods you eat: that is really interesting. What did your doctor say? Is that common?

alpha-Gal sensitization via ticks as mediators is an allergy, albeit a weird one even among food allergies. One problem in differentiation of intolerance from "true" food allergy is the fact that the GI symptoms typical of intolerance can quite often be observed as a part of the systemic symptoms observed in an IgE-mediated response, too. Just because you have GI symptoms doesn't have to mean it's an intolerance.


Yes, it's fair to say that my DD is likely to be a pretty extreme case in terms of her low threshold and very severe reaction history... but--

honestly, what I understand from talking to allergy/immunology specialists in the field is that it's not clear that desensitization can produce actual "tolerance" that is effectively normal.

If it can't, then that raises concerns re: what happens when other immune challenges are in play-- hormonal shifts or other illness, exposure to environmental allergens, etc. can all impact threshold dosing. That's not just for people at the low end like my DD.

EVERY one of the studies conducted on OIT-- peanut, milk, egg, etc... and every method studies (SLIT, OIT, rush/slow/low-level/high-level) have had participants who had to quit the study because of anaphylaxis, and several have had VERY serious problems with this outcome, including near-fatal and even in one instance a fatal outcome. Such studies won't enroll participants like my DD to start with, so they are more "typical" patients.

This is why, in spite of a handful of clinicians willing to DO oral desensitization... many of the leading researchers (the same ones who were so excited by it 5-8 years back when they were having good results in the short term with their studies) have now backed away from those earlier promising results, and have urged caution in offering desensitizations in regular clinical practice for now, until more is understood about the failure mechanism (which came as a huge surprise) and how to identify patients as "good" or "poor" risks for it.

http://www.aaaai.org/global/latest-...ch/sublingual-or-oral-immunotherapy.aspx

http://www.asthmaallergieschildren....r-food-allergy-not-ready-for-prime-time/

http://www.hopkinschildrens.org/first-long-term-study-of-food-allergy-treatment.aspx

Ahh. Thanks for the clarification.

I don't know what the deal is with me and meat. I did actually test allergic to beef, but at the time I tested I could eat it. Now I can't eat it, or pork either. (I can eat chicken and fish just fine, so it's not some psychological vegetarian thing or inability to digest all meat). I get a lot of tick bites due to being outdoorsy and my husband's occupation (he works outside, and despite repellent use and showering immediately on coming home, he brings in ticks). I have also had Lyme once.

My allergist said that testing positive indicates sensitization and that I needed to observe actual response to the foods in question. They offered a food challenge, but I didn't feel I needed it. I didn't get any 4 reactions, just 1-3. Of these, I now notice a mild reaction to one food and now do not eat it, but am not obsessive about it. If I were to avoid the foods I tested allergic to I feel like would not be able to eat anything, really (I tested positive to dairy, soy, several tree nuts, and corn, among other weird ones like broccoli and black pepper, and then there's the vegetarian thing) and I also tested positive to something like 60 environmental allergens. I had a really impressive array of welts that day! The allergist said that of their 400 patients I am among the top 5 most allergic. Yet other than recent development of allergy-linked migraines and problems with sneezing and runny eyes in childhood, I have few allergic symptoms. I do have oral allergy syndrome and have always had it. I am not a huge fan of raw fruits and veggies for that reason.

It's VERY common.

As many as 50% of positive skin-prick tests to foods are not clinically relevant and have no real meaning in terms of being allergic to the food. NEGATIVE results in skin prick testing (properly validated with both +- controls) are about 95% accurate for foods.

RAST testing for allergen-specific IgE is also problematic, though there are some well-established positive-predictive values that define a good solid 95% confidence level. Above that, it's very likely to be a real allergy. But there are also individuals who have quite low levels of circulating IgE and still mount impressive anaphylactic reactions to those allergens.

It is quite individual, and even then can be pretty idiosyncratic.

Sending you a hug Irena - fwiw, my ds was also once basically clueless and didn't believe the seriousness of a potential reaction. In our case, dh was "cured" of his cluelessness by me leaving him at home when dd was very young and he accidentally fed her something she was very allergic to - certainly not a situation you'd want to stage, but when he was there by himself with a toddler who was having a hard time breathing and breaking out in hives in front of his eyes, his attitude and perception changed quickly.

For me, as frustrating as it can be to see or have interactions with people who don't have a clue, I also am grateful when I am made aware of someone not having a clue - because it helped me realize early on in elementary that there were people out there - other parents, teachers, etc - who really don't believe allergies or serious or who didn't believe my dd really had allergies etc. Had I not been made aware of how insensitive and uncaring some people were, I wouldn't have realized the necessity to deal with that unknown. I'm in a bit of a hurry this morning, so I'm not sure that made sense... but essentially I was very naive about assuming that other people believed me when I said "my dd can not be around x or she could have a reaction", things like that. Seeing the non-reaction or skepticism etc expressed taught me that I had to be much more diligent than I'd anticipated in advocating for my dd's safety.


It can also change with time too - our food allergic dd was so allergic when she was younger that she had a list of 11 foods *total* (in the entire world!) that were safe for her to eat. She'll be 12 in a few months and has just recently outgrown most of those (IgE) allergies. We have been cautiously reintroducing foods into her diet over the past year. In the meantime, through all the years of special diets and monitoring what was up with food allergies we've seen one friend's child who had not had a history of allergies suddenly have anaphylactic attacks at 11 years old, and another friend's child who had outgrown her multiple food allergies and eaten her previously-forbidden foods for several years have an anaphylactic reaction to one of those foods as an older teen. There is so much that we just don't know and can't predict! My dd, in spite of adding all those once-forbidden foods back into her diet.. is now ana-allergic to something else. Just popped up last year, at 10 years old, and it's clearly getting worse this year. Believe it or not, it's not a food and it's in many ways more challenging than her diet ever was.

The other quick thing I'll add - my dd, since she was around 9, has been really very capable of describing how she *feels* and *most* of the time that's useful in determining if she's having an allergic reaction or not. However, she had what I saw as an extremely scary situation just last week where she suddenly was holding her throat and telling me it hurt *really* bad and I could see her face was swollen (and she was in a situation where she potentially had been exposed to an allergen)... and she insisted it wasn't an allergic reaction because it "didn't feel like one and I don't have hives". She was ok, but it has really driven home to me - the importance of teaching her, when in doubt, use your epipen anyway (that's our drs advice). Don't take chances. There was a teen here quite a few years ago who had a history of food allergies, was really adept at handling them, was always prepared, had her epipen with her at all times. She woke up in the middle of the night on a camping trip with friends and thought she was having an asthma attack so she used her inhaler. What was really happening was anaphylaxis, she misinterpreted the signs, and she died.

Sorry I don't mean to scare anyone needlessly. I personally don't live life worrying about the "what ifs" - I do believe my dd is going to be ok. Truly believe that. But it's a terribly terribly confusing and puzzling condition to live with.

polarbear