Gifted Issues Discussion homepage Forums General Discussion Fatal Allergy Reaction

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).