Feeling helpless - 5 year old severe allergies getting worse

[ThisSharpNavyRaven]

Hi, I've posted before about my child's allergies. Skin prick has confirmed severe fish and tree nut allergy, and he has had an anaphylactic reaction before which we used his epi pen for. He's been refusing baked beans for a while but ate some for dinner tonight and said his mouth hurts and then came up in blister like spots just inside his mouth. We gave antihistamine as per his allergy action plan and the reaction didn't progress further thank goodness. But now I'm so anxious that he's got a legume allergy! He has complained of an itchy mouth when eating hummus before too. I'll request another skin prick test from his allergy team asap.

Does anyone have any experience with children developing more and more allergies? We only found out about the fish allergy 6 months ago, then the nuts 3 months ago, so it all feels very overwhelming and worrying.

I can sympathise OP. This is what my DS was like between the ages of about 4 and 5. There seemed to be some new reaction every other week and I began to think he was going to end up unable to eat anything. I understand how scary and stressful it all is, between the fear of them reacting to something new and the unpleasant investigations. I don't really have any words of wisdom except to say my DS is now 19, still has multiple allergies but lives independently at University, has travelled abroad uneventfully, went to Scout camp and school residentials when he was younger and a whole host of things which when we were at your stage fely like they would be impossible forever.
If I had a magic wand I would of course make the problem disappear. I would love for my DS to be able to eat whatever he wants, not have to have an EpiPen everywhere and so on, but it does become just part of life and you (and they) learn how to deal with it. The anxiety never goes away completely, but in my experience at least, with time it stops being something that dominates all aspects of life like it does in the beginning.
Just a thought on the hummus, a reaction to that could possibly be to sesame rather than the chickpeas in it so I would ask to be tested for that too. It's quite a common allergy (one of my DS's ) so worth exploring if your little boy has not already been tested.
I hope things settle down for you soon.

Thank you so much, that really does help. I worry so much about his diet being restricted, and he's becoming a bit fearful about food making him sick.

Good point re. the sesame. I'll ask them to put that on the next skin prick panel they do.

OP my child is a similar age and has a sesame and legume allergy (not all legumes)
and some tree nuts. The PP os right please get tested for both. Peanuts are also a legume and having a tree nut allergy can put you at higher risk of both a legume and a sesame allergy.

Have you had the RAST blood test? It gave us a more accurate level of allergens causing the problems and the level of reaction. It can also test for a broader range of allergens in one test. Skin prick tests can be impacted by all kinds of factors and haven't been reliable for us.

My LO had severe allergies to dairy, eggs, nuts (various), wheat & soy. Also intolerant to Mango. We found out 50% of them by weaning the others by the RAST Test. On a positive note, he grew out of wheat and soy by 7 and now in teens think he has grew out of nuts and eggs - we will test in the summer holidays again. Dairy is the main one atm and his Epipens have saved him twice. We are very careful - but he lives a normal life and is happy / healthy tall teenager, its is stressful when little but you do adapt.

If you haven't already, make sure you request 2x Epipens plus piriteze to be kept in school and the same again for you to carry around with you. Also the orgran food brand is really helpful for allergen control.

@May09Bump no I've not heard of that, but I will look into it. It sounds really interesting. Sadly we've been told that both his confirmed allergies are life long, but I'd love to think he could grow out of them!
Yes, our allergy team have been excellent so far, so we're aware of needing 2x EpiPens everywhere. And his school have been excellent at engaging with us about it all.

My daughter doesn't have severe allergies but she does have 20. She's 4 she's on a restricted diet but as long as we stick to whole foods and avoid packets it's relatively easy to manage.

My daughter has a nightshade allergy. It was baked beans that first highlighted it to us. We are a lot of legumes but it was only when I ate baked beans she reacted. We removed tomatoes and her symptoms improved.

Hi, regarding the baked beans - my son also suddenly couldn't tolerate them anymore. I suspect flavourings/seasoning as he can eat other beans just fine. Perhaps anchovy flavour or barley malt. Also agree that hummus could be sesame seed. Note that can show up as a false negative on a skin prick test (which is what happened to us).

Thanks all, it's so helpful to hear from others with children with multiple allergies. It all feels very new and scary for us, and I'm really worried about his diet becoming more and more restricted. Luckily as part of his treatment he gets regular dietician follow ups and reviews. I do find allergies quite confusing - I know that a mild reaction doesn't mean the next reaction will also be mild, so I wonder if I should avoid the baked beans/lentils etc until we manage to get him seen again. Urgh, so confusing and worrying. I also am really beating myself up for not continuing with nut exposure as he got older, I wonder if I'd continued to give him cashews etc he wouldn't have developed an allergy.

It does seem that inflammatory illness and allergies are becoming so common these days. One idea I have seen is that we are exposed to allot more toxic substances in our every day lives than before and that the toxic load causes an over reaction of the immune response. its like the full bucket idea with stress, you can only take so much. It might be worth trying to lower the everyday toxins around your house, it might help ease the situation in conjunction with your existing treatment? some suggestions would be. Dont use fragranced products like laundry and fresheners, get some eco bedding without flame retardants, put a cover over your sofa also to protect from flame retardants, remove carpet from his bedroom. Try to buy organic food where possible. Its very hard to do but it can make a difference. Hope this is useful and he gets some relief.

Hi Olivia, yes I do worry about this, and micro plastics etc. I've tried to move him more towards whole foods and cut down UPFs as much as possible (which works well with avoiding nuts anyway). There must be a reason the number of people with severe allergies has exploded in recent times. He was a COVID baby as well, which I think had a big effect on his immune system.
Thanks and I will try some of the changes you've suggested to see if they help :)

I collected multiple severe allergies during my childhood. Dairy allergy diagnosed as a baby which I outgrew. Peanut allergy discovered at 18m. Tree nuts as a toddler. Legumes at around 6 (first sign was that I started refusing baked beans and peas), Shellfish as a teenager. Since then gladly I haven't developed any more. I buy very very little processed food as it's just easier and safer to cook from single ingredients.

The use of legumes to bulk out bakery items in particular has absolutely exploded so there's very little bread I can eat even though I'm fine with gluten! Jason's sourdough is my go to at the moment plus supermarket ciabatta tends to be fine. Lots of E numbers can be nuts/legumes (471, 472, 476 particularly worth avoiding).

Conversely my DD developed a dairy allergy shortly after birth which we've managed to combat with the milk ladder and she's fine with it now. We're going through the same process with egg and she's been able to eat it combined with starch and baked since being 3.

An interesting thing happened when she was 3. We were baking together and I let her crack the egg thinking that as long as she washed her hands straight afterwards she'd be fine. She actually came out in hives but no worrying mouth reaction or anything. The next thing she ate, a few hours later, was baked beans and she came out in hives. Next day was the same after fresh tomatoes. She'd developed a tomato allergy. I'm convinced it's because she'd reacted to cracking the egg and then her body decided the next thing she ate was the culprit and started reacting to it. It took six months but we did a 'tomato ladder'and she's now fine with them again.

Newly diagnosed dgd 14 months treated in hospital 1) had no response from gp practice, health visitor, dietician I thought they would be in touch? 2) hospital dr explained to dd that response to allergies is like a gang plank; if child well less reaction, if child under the weather greater reaction.

It's tough. I feel for you. My DS started off with "just" milk and egg allergies and then as time went on developed allergies to most legumes, nuts, sesame and pumpkin seeds.

Legumes other than peanuts are the toughest as most aren't included in the main allergens that need to be listed. Pea protein is in so many things now.

It does get easier honestly.

Without wanting to get your hopes up my DS grew out of all legumes apart from peanuts. Sesame he can mostly tolerate in oil form.

He also took part in the SOCMA clinical trial and can now eat milk in his diet as normal although technically still classed as allergic.

And my learning from the immunotherapy trial has been that if they are tolerating a certain amount of an allergen then you should continue to give it to them. Stopping is the worst thing you can do.

@Roystonv yes, we had a GP appointment after we were discharged from a+e after he had an anaphylactic reaction. They deal with prescribing the EpiPens. And we are under the care of the paediatric allergy clinic at the hospital where we had the skin prick to confirm and also a dietician appointment, along with a follow up booked 6 months later. Maybe you should make a GP appointment for them to chase this up?

And yes, we definitely notice he's much more likely to have a severe reaction when he is already unwell with a cold or virus. The doctor told us this too, so I'm extra careful and don't let him eat out if he's got a runny nose or anything!

@GargoylesofBeelzebub yes they told us this, so he does have peanuts at least 3x per week. Not sure I feel comfortable with trying the beans again though after the blisters in his mouth were so extreme...

Er I wouldn't call extreme mouth blistering tolerating an allergen.

Even mild mouth irritation on a regular basis from an allergen isn't ok. If I eat something that makes my mouth peel it also inflames my gut. It seems to affect everything from mouth to rectum.

@GargoylesofBeelzebub ah apologies I thought you were advising to keep going with all legumes

No worries. It was more meant in relation to other legumes that you had mentioned e.g. lentils and not to stop giving them just because they are of the same family.

My DD is allergic to peanuts but we were very much encouraged to give other legumes and also other nuts (Albeight technically not related) to help build tolerance as there are similarities in the proteins.

@GargoylesofBeelzebub yes, even though he has a tree nut allergy she said it's v important to keep up the peanut exposure, so I guess they must be related...