Newly diagnosed - support and tips

[Mushroo]

My LO has had eczema for a few months and sadly, reacted to both peanut butter and egg.

Shes 6 months and we started peanut butter early due to her eczema - fine the first few times but a reaction on the third go.

Egg was instant - she didn’t even eat it properly and had instant hives all over her face. (This was last week).

We’ve been very fortunate and able to see a private consultant who confirmed the egg and peanut allergy, but so far she seems ok with other nuts (based on skin testing, need to actually try them).

This has really come out of nowhere (no family history) and I’m quite overwhelmed.

Consultant said we can start egg ladder in a couple of months, and to just work through the other allergens. So far, dairy and wheat seem ok.

How do you all cope? I’m so anxious every meal time now waiting for a reaction.

Some specific questions:

1. Consultant said we didn’t need an epipen as her reactions so far have just been skin rash. Should we push for one anyway?
2. We love eating out, how do you deal with this? Egg seems scarier as it’s in loads of stuff.
3. im already terrified about kids parties, and kids eating cake and touching her, how do you cope with that?
4. if your LO has a peanut allergy, are they ok with other legumes?
5. How do keep your LO engaged and happy with food whilst making sure they know to ask before eating anything?

Im planning to introduce a new allergen every week, and make sure she has it a few times over the week assuming no reaction.

Any tips / advice / hand holding would be great. I’m so scared for her.

Give allergens early in the day and when drs are open.

Deep breath and dive in

My daughter has 20 food allergies but the delayed kind so less stress but harder to identify.

Kids parties aren't too bad. I message the mums to find out what foods they are doing or I speak to the venue. Due to my daughters list it's impossible to get them to do anything beyond a ham sandwich and I find my own peace of mind it's better for me to make something consistent with the other food. For example at the last party they did hot dogs and my daughter had a regular sausage in a part baked baguette.

I always ask the parents to get a tray of oggs cakes they are dairy egg and soya free and really tasty. At one party all the kids wanted one instead of the tray bake party cake.

My local area has a very good mums network. I'm in the south Manchester area and they are amazing! There's always someone with relevant experiences to answer questions. There are kids with anaphylaxis, asthma, delayed allergies, eczema. Babies, toddlers big kids. Those that have done ladders those that are experienced with skin pricks.

My daughter just knows. I always bend down to her level and explain that I am going to have a read of the instructions and check if there is anything safe she can have to eat. Last summer outside of an ice cream van my dad marvelled at how patient she was and then thrilled when there was a lolly she could have. Always have back ups in your handbag should there not be anything suitable or if there is a surprise pinata at the kids party!

Right now everything is new to you by you will be surprised how quickly you will become THE expert in your daughters allergies

@Superscientist thats so reassuring and insightful- thank you! Honestly already feeling a little better about everything.

Is the mums network allergy related? I’m south Manchester too so if you wouldn’t mind sharing that would be incredible!

My son was diagnosed with milk and egg allergy at 6 months, instant hives with both, we managed fine with just piritin on hand and one time my husband gave my DS normal salad cream instead of the vegan one and he got he face rash but cleared up straight away with piritin.

I did have to be extra vigilant at soft play and parties , more so the kids leaving bits of food on the floor! Went to my cousins party who I knew wouldn’t be too accommodating so just took him a little pack lunch and he didn’t seem to notice. He loves his soy milk and found egg replacements quite easy , he actually prefers banana pancakes to egg ones now. We go out for a meal maybe once a month and have never had a problem, they’ve always been able to make him something, most places online now show you the allergen information before you go , which is good as I like to plan ahead.

we were told to cut milk and egg until another hospital appt at 18 month where he had a blood test and was told to start the ladders. We started on egg ladder last month as that was the lesser of the reactions and he completed it last week, so pleased. His new favourite Is dippy egg! He didn’t react to any of the steps. Will be starting on milk today which I am more worried about but fingers crossed 🤞

Thank you - that gives me hope.

Although as we’re weaning she seems allergic to EVERYTHING. I’m keeping a list for the allergist but I’m fairly sure we’ve had reactions to:
dairy
oats
wheat
olive oil
rapeseed oil
rice

(we’ve not even attempted the other allergens yet).

It feels so overwhelming and lonely - we’ve not even received the NHS appointment yet.

What reactions have you been having?

Unfortunately often by the time support is in place you have done all the leg work!

With the oats have you tried gluten free oats? There is a significant contrast contamination of gluten in regular oats so even though oats themselves are gluten free.

@Mushroo ours was the same , we pushed for a phone call appt instead of face to face when he was 6mo and got one fairly quick. Could be something to ask about? We was then put in touch with a dietician and that was a phone appt too

@Superscientist its mainly skin rashes (occasional diarrhoea but not enough to be sure) but because she has eczema I’m finding it hard to pin point what is blotchy reaction vs eczema flare up and just second guessing absolutely everything!

I’ve bought gluten free oats today so going to give those a go!

It feels really hard, for peanut and egg her reactions were very obvious, but when the reaction is ‘maybe her face has flared?’ I’m worried I’m either over-reacting, or exposing her to allergens.

@Charlotteap ill try that as well, thank you!

It is hard. I think I would try to retest each query food on a good day for her eczema and see if you see the same result.
My daughter has delayed allergies so gastric symptoms and we had some foods in and out of diet for months trying to figure out if she reacted or not. For fish it turned out she was allergic but we were happy with oats. She couldn't tolerate bananas until about 18 months as they caused general stomach upset not allergy related and was on a reduced wheat diet until 3 as it gave her horrid trapped wind. For us removing cous cous and pasta from her diet was enough to manage this. It can take time for their gut to adjust to food!