scary allergic reaction Saturday-- about to see new allergist

[thenmama]

Thought I'd toss this latest development out to the forum on the chance one of you may have some thoughts, suggestions, or resources to share...

 

On Saturday my ds had a frightening allergic reaction to a coconut popsicle. He developed a very large, pronounced wheal where it had touched his cheek (> size of a quarter), plus swelling in his lips/mouth (his speech clarity was affected). He had an incident in April that I believe was also a significant allergic reaction to food (possibly nuts, and a scary reaction, too-- he said his esophagus was itchy, had anxiety/panic, hoarseness, possibly wheeze-stuff that makes you fear anaphylaxis). This is the same boy who, except when he was a toddler and tested positive for many things, has tested completely negative for all allergies on multiple occasions but has continued to have allergic-seeming reactions to things-- with increasing severity. I'd gotten a call from one of our kids' specialists on the day of his last reaction so we'd addressed it with that doc. He added blood allergy tests for a few items to ds's lab orders, but nothing came of those (only one was not completely negative-- almond--but that was only a level 1 which is basically considered negative/clinically meaningless--and coconut wasn't tested). This time I took ds to our awesome ped. I emailed her a pic I'd taken of Saturday's reaction in advance of our appointment on Monday and she said it was definitely a serious allergy reaction. She said his coconut allergy is confirmed (by the real life allergy test) no matter what further blood or skin tests show. Fortunately it was at least easy to nail the culprit for this one, but we're pretty certain he didn't have anything with coconut the day he had the reaction in April, so there's likely at least one other thing he's highly allergic to. We left our appointment on Monday with an epi-pen to carry at all times, an order to avoid coconut as well as all other nuts for the time being, and we have an appointment with a new allergist on Friday (ds is scheduled for testing Friday, too--the appointment is a few hours). We're concerned about how to protect ds from threatening allergens if we can't get good clues from his allergy testing, since these are not the sort of reactions you can afford to take lightly.

 

Does anyone else have a child with a severe allergy? How about kiddos who test negative but definitely have allergies? Anything I should specifically ask the allergist? Or...???

 

It's just terrifying to think that my little guy has a potentially life-threatening allergy. Still reeling from this one.

[dut]

Hi - this may sound a bit off the wall but here goes.....

 

my dd9 has severe epi-pen requiring allergies to pistachios and cashews. She has the same severe reaction you describe.

 

She has also been having lower level reactions to something for a while. The only common denominator that we could see in all the products was corn or one of it's many, many derivatives. However, when she eats whole corn at home we were not seeing the reaction and so were stumped.

 

Having read more about corn allergies and GMO corn allergies in particular, we think what we may be seeing is an allergy to genetically modified corn but not nongmo corn. We buy organic for home, hence, no reaction.

 

From what I'm reading, kids can show reactions to GMO food crops, where they aren't showing reaction to nonGMO. This is a controversial area but we have chosen to exclude all sources of corn unless we know it's GMO free, mainly by choosing only organic where the product might contain any of the GMO food crops eg soy, corn, canola, cotton and sugar unless it's stated as pure cane sugar (beet sugar is now GMOd). Unfortunately, the list of possible ingredients in processed foods that is as long as your arm.

 

Was the coconut popsicle homemade or store bought? If bought, I would check all the ingredients and their source.... sorry to sound a crank but this is the only explanation that has made sense for our dd's reactions. I don't think immunos can test for GMOs. I suspect they use nonGMO for testing but dunno... also I imagine most immunos would laugh you out of the office if you suggested it

 

Here's a link to a list of possibly corn derived ingredients in food. Not to say you're dealing with it but just for completeness. I hadn't realised how ubiquitous it was and with 90% of all corn grown in the US being GMO it was a scary list for me

 

http://www.cornallergens.com/list/corn-allergen-list.php

Edited June 13, 2012 by dut

[thenmama]

Hi - this may sound a bit off the wall but here goes.....

 

Thanks for the response and good info. I don't think your theory is off the wall. I'm no scientist, but to me it seems entirely possible that genetic modification could, and if I'm not mistaken in some cases is actually specifically made to, modify plant proteins. And b/c of the role of proteins in allergies... seems very plausible to my (admittedly more humanities-oriented) mind. We eat organic whole foods so I think we probably aren't dealing with primarily gmo or processed ingredient allergies (but that might explain some smaller, inconsistent reactions he had when he was younger).

 

Was the coconut popsicle homemade or store bought? If bought, I would check all the ingredients and their source....

Despite our usual homemade-only approach, though, these were actually store bought popsicles. They'd been picked up for my dd who'd had strep and been blowing through the cold stuff. But ds saw them and really wanted one... They were organic and had only three ingredients in them, of which coconut is the only one ds hasn't had very regular, long term exposure. And I've been suspicious of coconut in the past, but was never able to determine for certain if it was a problem. After reading more about coconut allergies this weekend, I realized this might also explain the allergy-like symptoms ds always has after bathing and sure enough, all of our soaps and shampoos have coconut ingredients (and apparently most do, especially the all-natural varieties--fortunately I'm good w/ diy!).

 

Oh- and we did have to remove corn when ds was a toddler-- and you're right that it is in everything!

 

also I imagine most immunos would laugh you out of the office if you suggested it

Well, I've had all sorts of docs not believe me and/or scoff when I told them my kid was having food allergy reactions despite his negative allergy tests-- and look where we are now. I can't imagine if it had been worse and I'd needed that epi pen but didn't have it because I had been pegged as just some over-anxious mother (who couldn't tell the difference between an allergic reaction and some viral, PANDAS, and behavior issues), and no one ever considered that I may have been right and his test results may have been wrong or took me seriously enough to cover the bases just in case. Thank goodness our new ped takes me seriously no matter what the "evidence" or conventional thought suggests.

[EmilyK]

I have a number of food allergies myself and carry an epipen. I've found allergy testing (blood/skin) to be inaccurate for foods and my allergists have always put more weight on an outbreak of hives and results with a food elimination diet (eat only rice, pear, lamb for two weeks and then add back one thing at a time - record reactions, long, slow and I hate lamb now). My mother taught me to pay careful attention to any itching in my lips or ears as that was often the first warning to a full blown reaction that would cover me in hives, start asthma, and potentially close up my throat. If I get the slightest itch like that from a food item, I immediately drink several glasses of water and get the benadryl and asthma inhaler ready w epipen nearby. Tree nuts and pitted fruit are the worst offenders. I find lots of tree nut products in soaps and shampoos (almond is common). Teach him to pay close attention to his body and how he feels. It was the best thing my mom ever did. I'm relieved that so far, our boys do not show food allergies. Good luck!

[tpotter]

Another thought is...do you have a really good DAN dr nearby? They may have a better idea of what is going on.

[cobbiemommy]

I would say the allergy tests are only so-so, but still valuable information. I have a life threatenting allergy to melons. I almost died while pregnant with oldest daughter because my throat swelled and I couldn't get the bite of melon to come up or go down. The allergist explained that while the melons are forming on the vine they are taking in a lot of environmental allergens, such as ragweed, which I am highly allergic to as well.

 

Find out what food family the coconuts are in and stay away from anything closely related, this is called cross-reactivity. I did a little digging on the web and since coconuts come from a type of palm tree it recommends avoiding hazelnuts and walnuts.

 

Good luck and get your child an epi-pen!

 

Cobbie

[airial95]

I'm going to second what Emily has said about getting them to listen to their bodies. I have lots of "normal" allergies - dust, grass, etc...) but I have had a lifelong very severe allergy to cats - for me it starts with eye irritation - not really an itch, but a feeling like there's an eyelash in my eye - followed by the ichy nose & throat, and then slowly swelling to where I can't breathe.

 

I also came up negative on the allgergy tests that were available at the time when I was a child. The severity of the attacks made it obvious that I was allergic to cats - but yet I tested negative for all pet allergies. I'm also not allergic to any other animals - just cats. (When I was a teenager an enzyme in cat saliva was found to be an allergen...likely my issue - but unknown back then)

 

My doctor's approach at the time was similar to what others have said - avoid cats and pay attention if you react to other stuff. My mom was given prescription medication to administer immediately in case of emergency (don't remember what it was)and told to call 911 if needed - this was the 70's and epipens weren't available.

 

We soon discovered that I was also allergic to a rash of syntheic chemicals in everything from some plastics, perfumes, candles (the coating used in some), and ironically - kitty litter (double whammy there!). By knowing that when I got "that feeling" in my eyes meant I might be reacting to something - it helped us identify some specific culprits (I won't go into the emotionally scarring experience of having to carry around just Cabbage Patch Kid shoes for hours in public to see if it was the dolls or the shoes I was allergic to....it was the shoes.) - but it also helped us identify when I was starting to react so we could act preemptively - before the severe reaction set in.

 

As an adult - I'm still pretty darn allergic to cats - but I've outgrown it to the point where I can at least visit someone's home who has a cat for a short period of time without having to medicate. I also know my progression of symptoms well enough to know when I'm pushing the limits as well.

 

Since I was a child - I've had only 1 close call, when I was visiting my in-laws when my husband and I were dating, I woke up in the middle of the night struggling to breathe - I immediately ran to the room where my husband was sleeping and woke him up - not able to really speak and he rushed me out to drive me to the hospital. By the time we got halfway there - I was breathing - although it was still hard - but the swelling had recinded. Turns out - the blanket he gave me to sleep with was his the cat's favorite blanket to sleep with. I always medicated before I went there and kept medicated during our visits...but basically sleeping with the equivalent of the actual cat on my face was no match for my preventative measures!! To this day - I insist my husband was trying to get rid of me...

[Kiera]

Funny how alot of your kids are truely allergic, yet tests are negative. My ds has the opposite problem! Both his blood IgE allergy and skin allergy tests show severe positives for just about everything, yet he's never had an anaphylactic reaction to anything! Go figure!

[thenmama]

Thanks for all of your responses! No time for a proper reply right now, but wanted to let you know I appreciate all of your help/support.

 

We're going to the allergist this afternoon and I'll post an update. I'll also share if I get any interesting info about the varied relationships between test results and reactions.

[dcmom]

Hi Kiera-

 

We had the same issue. Blood was taken during a pandas flare up, and both of my kids tested allergic to many, many things. Neither has ever had an allergic reaction. We are chalking it up to the possibility of an immune system gone haywire at the time the tests were done.....

[Kiera]

dcmom, yes, it's just more evidence to me of his immune system dysfunction! These tests were done prior to his initial pandas flare-up and diagnosis, although he's had multiple issues and diagnosis since early childhood (undiagnosed pandas). Just wondering if you ever had your kids retested when not in a flare up and were they normal then? My ds has never been completely out of a flare-up so I doubt they're normal now.

[EmilyK]

Funny how alot of your kids are truely allergic, yet tests are negative. My ds has the opposite problem! Both his blood IgE allergy and skin allergy tests show severe positives for just about everything, yet he's never had an anaphylactic reaction to anything! Go figure!

 

So I completely jinxed my DS who puffed up in hives last night. He'd just eaten mango, peanuts, coconut, and pineapple. The allergist wants us to avoid all that and tree nuts but won't test him until August to avoid a false negative. Were your kids tested shortly after a reaction? His antibodies have to reaccumulate or something. Either blood or skin testing would likely show positive if we tested him this week since he had that reaction last night, according to the doctor.

[Kiera]

Funny how alot of your kids are truely allergic, yet tests are negative. My ds has the opposite problem! Both his blood IgE allergy and skin allergy tests show severe positives for just about everything, yet he's never had an anaphylactic reaction to anything! Go figure!

 

So I completely jinxed my DS who puffed up in hives last night. He'd just eaten mango, peanuts, coconut, and pineapple. The allergist wants us to avoid all that and tree nuts but won't test him until August to avoid a false negative. Were your kids tested shortly after a reaction? His antibodies have to reaccumulate or something. Either blood or skin testing would likely show positive if we tested him this week since he had that reaction last night, according to the doctor.

 

 

No my ds didn't have a reaction, he was tested due to chronic stuffy/runny nose, eczema, random hives etc. I know he did need to be off antihistamines a couple of weeks before testing though.