Allergy clinics and Dieticians

[Yellow85]

Hi, just wondering what everyone else’s experience is of initial tests/consultations post first allergic reaction? My DS was in hospital after a reaction to a cashew nut - swollen lips, tongue and face - luckily he didn’t swallow it! Whilst there we were advised he would see a dietician and be referred to allergy clinic.

We’ve heard absolutely nothing about allergy clinic and the dietician literally sent us a letter saying ‘here’s a leaflet in allergies’ that’s all you need so not appointment is being offered. Is this the norm? Or are we caught up in some kind of covid induced plan B?

I ask as the info on leaflet contradicts what a&e told us and there’s literally no one/nowhere to direct my questions to.

If its just a tree nut allergy, presumably his diet is quite balanced so you wouldn't need much help from a dietitian? I always assumed this was for kids with multiple allergies and allergies to things like wheat / dairy.

My son has IGE allergies to dairy, egg, legumes, fish, seafood, Sesame nuts and stone fruits. We had a short phone conversation with a dietitian at 9 months old and then an in person consult at 2 years old.

Neither were very helpful as by then we had managed to figure things out by ourselves. It was very tricky trying to sort a balanced diet though and I'm still not sure he's getting enough omega 3 fatty acids or iodine.

Thanks for responding! We actually think it might even be more specific than all tree nuts as he’s been totally fine with the odd bit of Nutella up until now (he’s 7). A&e said just not to introduce anything new to his diet with any nuts in, but he could continue with anything he’s been fine with so far. Dietician booklet says cut out all nuts and check shower gels etc as standard.

He’s obviously distraught about the Nutella on toast lol.

Anaphylaxis Campaign are really helpful. Here’s their info about NHS referrals. They also have a lots on newly diagnosed abs a helpline.

www.anaphylaxis.org.uk/living-with-anaphylaxis/the-nhs/

It's great he can tolerate some nuts and our allergist has always said to keep eating the nuts you can tolerate so you don't develop a new allergy.
However, she recommends buying the whole nut and then e.g. blending it, to avoid cross contamination.

Not sure if the allergist told you, but there is a very strong link between cashew and Pistachio allergies so those allergic to cashew are also is allergic to Pistachio too.

@ExPatHereForAChat thanks for that! I’ve removed all nuts until we at least see the allergy clinic - but I might talk to DH about letting him Nutella back 🤣

I only knew about the cashew/pistachio link from a friend who has a nut allergy. We’ve literally been told nothing other than a leaflet through the post.

As SparklingLime mentioned do contact Anaphylaxis UK for advice while you are waiting to hear back as they will provide with a lot of useful information.

Referral waiting times are extremely long, it could take months before you get an appointment. Find out the contact details for paediatric or allergy department of the hospital and check if they have the referral.

My child has intolerances to beef, lamb, milk (including goats), eggs, sesame seed, soya.
For the last few months there was something else causing another reaction which we still don't know what it is, but we managed to identify certain products which contains it like rice krispies, veggie straws and melty puffs.
In all the process, I managed to visit a nutritionist, but not much help. He was only tested for milk. It was always us by observation and writing down absolutely everything he has and the ingredients that contain that we manage to track down the problems.
In the last few months, we realised my child was not growing. We've been complaining, several times, to the GP, health visitor, etc. They are not interested.
He is now at the 0 percentile in height. The health visitor answer was, “don't worry just yet, he is still in the table of growth”. When he was born, he was at 50th percentile or above of growing curves until all the food intolerances started.
My advice would be going private if you can or call your GP/health visitor every single time your child has an issue, so eventually they may believe you and try to do something.

Might be worth ringing appointments at the Hospital on Monday and double checking that you're on the waiting list for that Allergy Clinic.

If they say yes, ask fir the name of the Consultant then ring the switchboard back abs ask to speak to their Secretary, ask how long the waiting times are for a child with anaphylactic shock and make it clear that you are able to go at short notice if they get cancellations.