Allergy help

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Hello, my 6yo has severe allergies to tree nuts, fish and (most) beans. We carry epipens and are under the care of the allergy team at the local hospital. He's had a couple of anaphylactic reactions and been hospitalised, as we discovered new allergies, so we are quite well versed now on severe reactions. However I'm sure he's also experiencing delayed reactions, in that he potentially comes into contact with fish (ie someone in a restaurant eating it) and then several hours later vomits for a few hours, or develops a bad cough.

The allergy team we're working with seem to completely rule out these being allergic reactions though, because the reaction happens hours after exposure. Often we don't even think there's been any exposure to a known allergen at all, but it just seems like a reaction to something unknown. This has been happening roughly one every 4-6 weeks for years now (since he was about 2 or 3). Could he have a mixture of IgE and Non-IgE allergies? FPIES? Just wondering if any allergy parents have experienced anything similar with complex severe food allergies.

I've obviously been to the GP many times, and we see the allergy team every 6 months, as well as an asthma nurse because sometimes he gets a horrendous viral (?) wheeze. So I'm really desperately looking for any anecdotal evidence about similar children! If they exist...

Had one delayed reaction but only after an initial severe reaction, it came on and off for the following 4 days. It affects asthma too. Has 2 of the allergies your child has and in the most severe form, and airborne. All other times there was no delayed reaction. My gut tells me the reactions are getting worse with each exposure. Has also had random urticaria or rash and did not know the reason. Anything is possible with allergy which is why it is so scary, the most important thing is what you observe.

@Fantomfartflinger thanks for this and sorry you're going through it too. Yes after his anaphylactic reactions we had some delayed symptoms too. It's so hard trying to observe and work out what's an allergy and what isn't... On one occasion we actually administered the EpiPen and then the paramedics administered two more adrenaline shots when we thought he was having an allergic reaction and it turned out it was an asthma attack so obviously the adrenaline didn't work. Awful and so confusing. After that his allergy doctors said it definitely won't be anaphylaxis if it's been more than 30 minutes since he consumed some food (in that instance it had been hours).

How did you discover your child's allergy was airborne? I know fish can be and I'm wondering if his is, and that's why he's having unexplained allergy symptoms like vomiting when he's not eaten anything.

Thanks for sharing, these symptoms are so confusing and it's helpful to hear from someone with the same allergies. Fish and tree nuts is a combination I've not heard of anyone else having!

My son used to get unexplained hives and also vomiting up to 48 hours after ingesting an allergen. We saw a host of specialists who were less conventional (not UK) and found that excluding other things that were not showing up on the RAST test helped him. We saw a functional medical doctor who put him on a hypotoxic diet (I don't know if that is a widely used phrase or specific to this individual's approach) but basically, excluding gluten (and gluten like grains) dairy, tomatoes, seeds, nuts, pulses and beef helped him. I was also able to identify many of his asthma triggers which included many fragrances, feathers, foam, latex, animals and eczema triggers which included Neoprene and polyester. Our house became somewhere that only had low processed things in it. By removing all of these external things, we were able to support his body and protect his immune system. It has not been easy. Puberty has been amazing for him as that has seemed to change his immune system and he can tolerate a lot more but I am dreading the impact of him.leaving home and being surrounded by things he can not control.

We found out all of them were airborne due to the child having symptoms without ingesting it but still having milder symptoms We make the assumption that it will not be anaphylaxis unless it is a significant airborne amount. If you can smell it then you are ingesting it particularly if cooking steam is involved. So if you are trapped in a plane and everyone is eating is eating it then you’ll have a problem. An example is that as they get older, they know someone is eating eg peanuts in a room without seeing them do it as they feel the tickle. It’s like a horrible sixth sense.

@Fantomfartflinger gosh I think it does sound like at least one of his allergies is airborne then 😔 it would explain these milder symptoms when we don't think he's actually ingested anything. I guess that makes going out for meals and hotels etc a bit of a no-go then... Do you just avoid places where fish is being cooked?

Yes you have to sit outside or not go at all.
You have to tell the staff about cross contamination. It’s a nightmare especially abroad and self catering is a better option.
We have been in A&E several times. Eventually they figure out a routine and safeguards when they are older. It cannot stop every eventuality. It’s worrying as a parent.

My DD had serious childhood allergies- peanuts and walnuts- and went through a spell when she kept getting what seemed to be allergic reactions, not to the point of anaphylaxis, but hives and swelling. We had a nut free house and couldn’t work out what was setting her off. Also we were convinced it must have been a delayed reaction to something.

We saw her specialist who ran further tests and ruled out any additional allergies or delayed reactions and said she had idiopathic angioedema. It seemed to last a couple of months then just stopped. It was so stressful though as we couldn’t work out what was going on. Her other allergies remained but the random hives/swelling stopped.

with that wheeze i would definitely try to make his bedroom a total sterile zone. we use the iDustMite encasements to seal the mattress and pillows just to remove that environmental load at night. if his immune system isn't fighting dust while he sleeps he might handle the other triggers better during the day

There is a facebook group “parents of children with multiple allergies” which is really good for these types of questions. it has lots of americans who seem to get better medical advice than we do!

My experience with fish allergies is that the use of Fish oils, Worcestershire sauce in the pan are often the sauce so you’ve ingested without your knowledge. Things like mince for example may include Worcestershire sauce. We have antihistamines and dd takes at the first sign (her chin/face begins to itch/tingle).

Thanks for all the advice. My gut feeling is that it's the fish allergy causing him issues, though he's never actually had a severe reaction to fish, only facial swelling. I also wonder if when he's a bit ill with a virus his body becomes more sensitive to allergens, would this make sense due to allergic reactions being an immune response? Often when he gets a cold (runny nose) then he'll begin vomiting after a day or so. We've been told this is his body's response to a virus but I've never met another child who vomits with every little virus.

Thanks for the info about more alternative type treatments. Maybe we need to go private and get more holistic advice. I appreciate everyone sharing their experiences. It's a real minefield as someone with no allergies!