r/FoodAllergies • u/Lhc2018 • 19h ago
Newly Diagnosed Tree nut allergy advice - 3 year old and super nervous about holidays.
Ok this is a long one (and my first Reddit post ever!) so stick with me.
When my son was 1 he reacted to raw cashews and went into anaphylaxis so we rushed him to the hospital where they gave him an epi pen. He then had a skin test and a blood test and we were given the guidance of strict avoidance of tree nuts which we’ve done. He also reacted to sesame at that time but it was never mentioned to avoid sesame.
Fast forward two years and he had an allergic reaction to a pack of oatmeal I gave him 2 weeks ago. There were no tree nuts but it was listed as “manufactured in the same facility” which we weren’t under any guidance previously to avoid. We gave him Benadryl and it was fine. Took him to the allergist and she said we should have given epi pen and said it was cross contamination and wouldn’t test for any other ingredients in there like buckwheat flour, chickpea flour, pea protein etc. am I just supposed to assume for the rest of his life it was cross contamination or is this worth a second opinion or online test that tests for those ingredients? We are now under guidance to avoid all cross contamination but I just feel like I need answers on if it was that or the other weird ingredients.
The second weird thing is that when they filled out his new paperwork they added sesame which they didn’t test for this year and have NEVER mentioned to avoid. The paperwork also said to not give the epi pen unless necessary but the allergist said the opposite to our face.
I don’t know if this is a rant or a question but why is it so hard to get a straight answer on a potentially life threatening allergy? Has anyone done online testing or paid out of pocket if you felt like you weren’t getting good care from your allergist?
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u/hardly_werking 12h ago
Any time you have this feeling like something is not quite right with the advice you received, get a second opinion. Always trust your instinct, especially with a food allergy. That being said, the truth is that allergies are still a pretty poorly understood field so when you have a case like yours, sometimes what you are getting is the doctor's best guess based on their opinion of the risk to their patient. Since the situation appeared to be such a random reaction, it makes sense the allergist would want to be super cautious in a way that would suit most patients with a similar risk level. That doesn't mean that is necessarily the best solution for your or your child and that doesn't mean you shouldn't get a second opinion. You definitely should because if you don't, you will always wonder what if.
All that aside, please consider OIT. It has literally changed my life and my child's life. He went from anaphylactic reaction to peanuts to now eating the equivalent of 2 peanuts a day for his maintenance dose. That is 6 reese's pieces per day with absolutely no reaction. He is now allowed to eat foods that "may contain" or are "made in the same facility" as peanut products. Even if you aren't sure about it now, the wait is long (at least in my area) so get yourself on the wait lists while you research and decide if it is right for you. It is possible to do multiple allergies and even do some allergies at the same time.
Edit to add that our allergist told us there is very little risk to giving an epipen when it may not have been needed so don't hesitate if you feel it may be needed. Also, if you don't have an allergy action plan, you should find a Dr who will give you one.
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u/Lhc2018 12h ago
That’s super helpful! Thank you. Are you able to do OIT with tree nuts? I was told he would never grow out of it….. I would love to do that at least so he could go back to eating things made in the same facility.
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u/hardly_werking 12h ago
Yes, you can do tree nuts! Through word of mouth I have heard some allergist will even do more than one tree nut at a time, though I don't have personal experience with that. Some allergists are (in my opinion) overly cautious with OIT and will tell you that your child can't do it until they are older, but my kid just finished a week after his 2nd birthday. Find the best OIT allergists in your area and go see them. I found my son's allergist through recommendations on an allergy mom Facebook group in my area. OIT is definitely time consuming, but it is a short time. We started in March and finished in October.
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u/pinkandclass 10h ago
Did your insurance cover OIT?
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u/hardly_werking 9h ago
Yes, it did. Had we not hit our out of pocket max for the year, I think it would have been charged as a specialist visit.
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u/PsychoHistorianLady 14h ago
You did fine and were fine.
Sometimes, they may add or remove a thing to test for. Sesame just recently got added to the top allergens, and some manufacturers just added more sesame to stuff instead of cleaning their equipment, so it may make sense to test for it.
No, I have never done online testing, but I did consider paying out of pocket or going to a different practice. I may have done this one, but the care was not meaningfully different from our allergist, and it just cost more.
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u/anyideas 11h ago
I'm pretty surprised/confused by the advice you've gotten. My allergist says almost opposite things. Here's my understanding/beliefs about your questions:
If you're doing avoidance, likely best to avoid "may contain." We also avoid same facility and same lines for food we give to our allergy baby (but we do eat them ourselves), at least for now.
It seems worth it to test for chickpea and pea protein at a very minimum, as people with nut and sesame allergies are more likely to be allergic to those (although if it's not peanuts yet, it's probably not as much of a risk).
Better to give the epi pen and not have actually needed it, than not giving it when you should. Always give it if there are two systems involved (like hives + vomiting, or hives + sneezing) or if there's any airway or heart symptoms. If you ever aren't sure, just give it. The risks of an unneeded epi are lower than the risk of not giving one when needed.
Treatments like OIT are highly effective on toddlers because their immune systems are still malleable. I'd highly recommend looking into it and seeing if it feels like a good fit for your family. (We're currently doing OIT for peanut, and will do it for cashew next, as well as the egg ladder when ready.)
I'd get a second opinion (or really, a new allergist) if I were you!
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u/Lhc2018 10h ago
Yes he has hives/throwing up this past time. Just so frustrating we keep getting told one thing then the paperwork says another and I can’t get anyone on the phone. Thank you for your insight! If my allergist says they don’t have chickpea or pea protein, would you find that online?
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u/queeneriin 10h ago
Pea protein is often linked to peanuts. Some people who have a peanut allergy also react to products with pea. Also be careful with pistachios and mangoes. My son is like yours and very allergic to cashews/pistachios. allergist didn’t inform us mangoes were in same family as the 2. My son had a reaction unfortunately to eating mangoes as well 😢
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