When does reactions become serious.

[Oakleavesandcookies]

Hi everyone, I really need some advice and a sanity check
My 3-year-old son has had an egg allergy since birth. Historically, it’s only ever caused GI issues (sickness and bloody diarrhea). However, over the last 6–8 months, his allergy has completely changed. He has started reacting to egg in the environment (airborne) by coughing, sneezing, getting hives, and developing a croaky/hoarse voice.
The reactions are getting more frequent though it does always seem to resolve once away from the egg. Yesterday he nibbled a tiny bit of biscuit that had been labelled vegan which wasn’t and immediately broke out in hives and started coughing. Piriton sorted the hives and he only coughed and croaked for a bit then was fine that his airway is getting involved is terrifying me, though I’m glad I’ve seen so swelling.
I saw the GP today who prescribed Montelukast (a daily preventative!) and flat-out refused an EpiPen, I had been asked to enquire from the local authority catering team - as I’ve been trying to get him into breakfast club. She told me she "cannot prescribe an EpiPen unless he has already had a full anaphylactic reaction."
I am in Wales. From everything I’ve read online, UK/BSACI guidelines say that if a food allergy involves respiratory symptoms (like a cough and a croaky voice), they are at high risk and should be given auto-injectors as a safety net.
Has anyone else been told this by a GP?
Shes asked for his consultant to see him again so I’ve rung and left a message. I’m just concerned that it’s now airborne and effecting his airways and breathing. I know it’s not that series as it doesn’t affect his circulation and does resolve once moved away from the egg but from what I read each reaction could potential be worse and put him into full anaphylaxis. Is this right?

For what it’s worth I think his GP is amazing and has helped so much with his allergies and other bowel problems. I’m just concerned and I’m not that parent normally to worry but I’m looking at cafes in a whole new terrifying light. 🤦🏻‍♀️😆

Coughing and croaky voice are signs of anaphylaxis and should be taken very seriously. He does need epipens.

https://www.nhs.uk/conditions/anaphylaxis/

Thanks - i was told because it resolves fairly quickly it’s not by the GP.

This sort of reaction only started after we tried and spectacularly failed the egg ladder in January. He was sick after one cupcake out of 12 that had one egg in split between all the cupcakes. He was so sick we ended up in an and e as we thought it was his appendix as he wouldn’t let us touch his stomach at all.

Then around two weeks later he had his first reaction in the environment. They said his symptoms were worse as his immune system was in over drive and it should calm down again. Now the Gp hope the tablet she prescribed to be taken daily should do that. Does this sound right?

Im not usually so unsure but everything I had read was contradictory to what she said.

Demand a referral to Allergy clinic. Your little one needs an EpiPen.

Thank you. I’ve been told before there is no allergy clinic as such in our area. He’s had bloods when he was an infant as he seemed to be reacting to everything, that did show egg was raised. However his last lot of bloods has shown that his IGE marker is raised it’s lower than a year ago..
We are under a consultant so I’m hoping she can help

your Gp is wrong. Coughing and croaky voice are anaphylaxis symptoms.

Slightly different situation OP but my son was initially refused an epi pen by the allergy clinic in our area, on the basis also that he’d never had an anaphylaxis reaction (he had reacted to cashews through breast milk and had a positive skin prick test with a large wheal, as well as positive IgE blood test).

I got a 2nd opinion and wrote to the allergy clinic and Pals confirming I intended to make a complaint, and I wasn’t happy with the wait and see approach. The allergy consultant then prescribed an epi pen (after consulting with specialists at the Evelina hospital who confirmed they agreed with the need for epi pen).

Sad that it should be needed to push a complaint to get anywhere, but I would definitely say your child needs one. Definitely push the consultant if you can

Your GP is an idiot and unable to recognise signs of anaphylaxis, OP.
What you have described is an anaphylactic reaction.
Not sure what they mean by a ‘full’ one.

Our allergy consultant told us that once the airways are compromised he has no choice but to prescribe epipens.
Symptoms were also from egg allergy in our case.

How is your DS now @Oakleavesandcookies? Have you managed to get an EpiPen yet?

Thanks for asking. Much the same. We have a consultant appointment on the 22nd it took us a long time to get in contact with her as her secretary wasn’t answering phone or email to me or the gps.
Gp has been useless in the sense that they won’t prescribe an epi pen. He was on montalucast (might not have spelt that right) but we had to take him off that as it dramatically altered his behaviour the Gp prescribed that to try and keep his lungs open? Said it’s normally for asthma.
Atm we avoid egg everywhere. We don’t go out for breakfast we don’t eat it in the home and I’m hyper vigilant (which I would be even if he did have an epi pen). School have been fab. He’s only in nursery so doesn’t have dinners but they have reassured me there will be no egg anywhere. Also they have epi pens as a just in case anyway. So technically he’s better protected there than with me currently.
we don’t have a dedicated allergy paediatric team in our health board. However 8 miles down the road in Cardiff there is. That will be my next shout trying to get a cross boarder referral if our normal consultant isn’t much help.

Just to update. No epi pen. Consultant said as no swelling not anaphylactic. Told to avoid egg. Sent for another blood test in two weeks and egg challenge under hospital conditions. Wait times long for that. Not sure how I feel.

Was it an allergy consultant?

Usually someone at the Hospital who has specialised in allergies I’m assuming. Most Hospitals have an Allergy Department these days.

I’d want really close supervision for that egg challenge. Maybe request that they do the first few steps at the clinic?

Not an allergy consultant. She’s gastro. We are under her due to bowel issues. She admitted herself it’s not her area. There’s no allergy department as such in this health board apparently though there is now a nurse who supervises the egg challenge.
I don’t even know what to do anymore I’ve been fighting for him for three years and no one listens.

That doesn’t sound great OP.
I’m sorry, you must be so frustrated!

I’m surprised by you not getting an epipen as my DS did with a similar reaction to egg. He is also allergic to peanuts and nuts though so maybe that made a difference, although any reaction has been to egg as nuts are easier to avoid. The consultant said once the airways were compromised he had no option but to diagnose the Epipen.

Baffled as to how there can be no allergy consultant available. Is it worth going back to your GP…or a different GP?

Usually a food challenge is to see if someone is allergic. DS did one with peanut to see if he reacted…the blood tests, skin prick tests indicated he probably would but you can’t be sure until you see the reaction if you eat the food. They did it at the hospital.
He didn’t do one for egg as he’d had reactions already so we knew he was allergic.
Sometimes the challenge is done to check if people are still allergic to something though. Children can outgrow egg allergy.

I’d really want to see an allergy specialist, not a gastroenterology consultant.
I’m sorry OP. I’d continue to fight this if possible 💐

You need a proper referral to a allergy consultant. I would go private if you can afford it, get them to give you an epi-pen prescription and then treat it as par for the course going forward.

The reactions sound strong for relatively minor exposure - what would happen if he ingested a lot more?

Also note that food labelling for vegan does not necessarily mean free from egg traces due to cross-contamination.

I would honestly push for a referral to the Allergy Clinic in Cardiff

Can you pay to go private OP. An initial consultation might be all you need to get the ball rolling regarding the EpiPen. My daughter had an egg allergy as a toddler but she could handle it baked (& now has no problem eating it). She also has a cashew and pistachio nut allergy. Luckily no serious reaction so far (might be down to us successfully avoiding it) but she was given an EpiPen because you just can't predict how serious a reaction will be and nuts tend to be more serious. She's 10 now and has been retested a couple of times so unfortunately it's a lifelong allergy.

My sister has an egg allergy. She never had an EpiPen growing up (in the 80's) but her tongue would swell, puffy eyes, vomitting etc. She did have to go to a&e a couple of times. She finally has an EpiPen now. She's never had anaphylaxis though and has had numerous fairly serious reaction. I would keep pushing to see an actual allergy doctor even if it means travelling.

That’s ridiculous. I have an EpiPen for a reaction to something unknown when my tongue swelled. Complain and see a different GP. That’s really not
not acceptable