Pls help - baby with multiple food allergies, feeling a bit lost

[Teapig]

Hello,

My daughter is 6 months and had a major reaction to cow's milk last week - major as in difficulty breathing, swelling of face, lips and ears and near loss of consciousness. It came as a huge shock to find that she is allergic to:
all dairy
eggs
soy
wheat
nuts

There could be more she is allergic to that she wasn't tested for so we are taking weaning slowly.

I'm still trying to understand the impact on her life and how I can manage risk without stopping her from doing things. If anyone has been through this or has any experience I'd really value your advice as it all feels a bit overwhelming. In particular I'd like to know:

If anyone has a little one who has outgrown multiple severe food allergies?

Is it possible to ever eat out with a food allergy? It makes me so sad that when she is bigger we may never go out for a family meal for fear of cross contamination in the kitchen?

How stringent are you on things little ones with allergies touch? I wonder if I should wipe toys that she may pick up at friends' houses/playgroups before she touches them but I don't want to give her OCD.

What are the hardest/most risky situations to manage and how do you manage them?

These are probably stupid questions but any advice would be great. Thank you.

Gluten grains: wheat, rye, barley, oats contain a form of gluten often tolerated by coeliac sufferers. Plus wheat in all it's forms, couscous, spelt, kamut, einkorn.

This list is useful though not exhaustive.

I have a rather extreme Immunologist who believes anyone who has allergies should avoid dairy and all grains except Rice, Quinoa, Amaranth and Buckwheat.

red, I will definitely check out Goodness Direct, thanks a lot for the tip. I'm not sure if I can have coconut milk as DD tested allergic to tree nuts and peanuts, I'll check with the dietician.

In fact checking with coconut is ok is now top of my list of things to do now I know there's a dairy-free icecream out there - thanks for that tip mango, you may have saved my sanity!

Mango your insights into parties has made me feel much better. I know I'm thinking a year+ down the road but I am a worrier and the thought of DD really missing out has been really upsetting me. Hopefully like your DS she will be happy with her lunch box, have some safe party food and run around like crazy anyway.
I'm interested in how you eat out safely. Do you talk to the waiting staff or chef or just choose carefully from the menu and that is enough?

Thanks for the clarification misty, I've been avoiding all grains bar rice but perhaps now I'll allow myself some Quinoa, Amaranth and Buckwheat.

It's funny how much more manageable it all seems now having 'spoken' to you ladies, thank you!

We were very cautious eating out at first. We started by bringing food for him anytime we went to a restaurant. As he got older we started trying bits off the menu that were safe and stuck to places which provided an allergen menu. Most chain restaurants do (Nandos, McD, Whetherspoons, Harvester, Pizza Express to name a few).

I always told the wait staff what his allergies were, checked the menus online, then again when we got there (sometimes they vary!). I now alert the wait staff mainly so they can let the chef know to avoid cross contamination in the kitchen. As DS is now tolerating small amounts of baked egg and milk, he is less likely to react to traces of those, but nuts are still an issue. When he was much younger I also wiped down surfaces with baby wipes before he sat down, as he used to get hives just using highchairs belonging to other babies even though they looked clean.

Don't worry about bringing safe food for your baby to supplement. I found the restaurant staff more than happy for DS to have his food from home once I listed his allergies. The profit from a child's meal is not worth their worry having to cater for him! We can now walk into most restaurants apart from Chinese/Indian/Thai and be fairly confident there will be something he can eat. Safe bets are chips and beans - good thing he loves them.

I started a thread ages ago on places to eat out with multiple allergies, you may find it useful to start with. www.mumsnet.com/Talk/allergies/a1630968-Eating-out-with-multiple-allergies

Feel free to pm if you every need someone to talk to. It's a scary and worrying time BUT you will get through it. I found the more I knew the more in control I felt. It may work for you too

Koko is the new name for kara.

You won't be able to just pick off a menu without asking the waiting staff. Much safer to ask anyway as you will find when you start reading labels that you actually had no idea what was in your food. For example milk in ham, milk in chicken gravy.

I remember a waitress looking at me when I asked get to check there was no milk in the ham. She said she was sure it didn't, but lo and behold there was milk in the ham.

My DS has always been happy with a lunchbox of party food. I remember one particular party the kids had bags with a sandwich, carton of juice and a packet of crisps. The kids eyes were like saucers as DS emptied his lunchbox of sweets, top hat cakes and chocolate yoghurt .

Aaaah, that's why I haven't seen any Kara around lately. Me and my lousy observation skills. I thought the packaging looked familiar!

Just to add to all the advice you've got, I was told that rice milk is not suitable for children under 4 as it contains very small traces of arsenic. Oatly is a common substitute, but does contain a small amount of gluten so unsuitable if you're avoiding that. The Koko is good, and coconut is very unlikely to be an allergen, although you might want to test in a safe environment like the doctor's surgery if you're unsure? You can also now get Hemp milk, which is gluten-free.

The best egg replacer I found was Ener G (available from Goodness direct or amazon I think). There are lots of good gluten-free flours and (easier) some gluten free cake mixes from companies like Doves Farm.

I think that a coconut is actually a fruit, not a nut, so a nut allergy doesn't automatically lead to a coconut allergy.

Double check that though

Yes double check the koko.

Just to add, my lo got diagnosed before he was weanedso had to cut all of it out of my diet. His eczema cleared up completely in two weeks.

Thank you all so much for the advice, it's so so helpful.

Mango thanks a lot for sharing your eating out experience that helps a lot. I'll check out your thread and thanks a lot for the offer of me PMing you I might take you up on that, I really appreciate it.

I'm on my phone so I can't name check but I have learnt so much from this thread already. I had no idea coconuts were fruits rather than nuts, doh. I will check with the dietician whether I can have them. I also had no idea that some chains do allergy menus, I'll be checking those out for sure.

I think someone said that it's like joining a club that no one wants to join, which pretty much sums it up as I'm sad that DD has all these risks around her. But it's a damn sight easier with the knowledge and support I've had from you guys - thank you.

Another question, have your DCs outgrown some/all of their allergies? If they still have some what are they and is it likely that those will be outgrown in time?

Thank you!

Ds has outgrown egg and soya. His consultant has hopes he'll grow out of dairy, but the peanuts might be with us for life. He quoted something like 90% of kids grow out of dairy...

red good for your DS outgrowing egg and soy. I hope he outgrows dairy soon too. I heard that nut allergies tend to be for life but you never know, I have my fingers crossed.

Teapig, coconut milk should be fine for your lo, but please do double check as after all none of us are healthcare professionals (although from threads on here it seems a lot of us have a lot more knowledge of allergies than GPs as we deal with it on a daily basis! )

My DS is now only being seen by the consultant every 2 years as he is now over 5 and they feel it is unlikely he'll outgrow milk, eggs and nuts now . It seems that up to that age the majority of kids will outgrow milk or egg. Multiple allergies and nut allergies less likely to be outgrown .

trixy, I'm sorry your son hasn't outgrown those allergies but I do hope he might go on to do so. I hear that some people outgrow allergies as late as their teenage years.

I think it's pretty unlikely that DD will ever out grow her allergies. She has five including nuts and some are high I know I should just get with it but makes so sad to think of all the things she'll miss out on. Oh well we'll just have to wait and see I suppose.

Don't lose hope.

DS outgrown soya, chickpeas, lentils, sesame and beans. The others have definitely become less severe .

I'm pinning my hopes on chickenpox now . I have heard of people not being allergic anymore after having chickenpox. I suspect I may be disappointed.

Funny you should say that trixy. My DS started tolerating small amounts of baked milk and eggs after a bout of chicken pox! He is still allergic though, just less so than before. I've never heard of the CP connection before.

Wow the CP connection is interesting. I wish they could do a load more research into allergies.

I would be happy if she outgrew some and those remaining were less severe, fingers crossed.

Just a personal note:

I have a friend who has two children, on four and one two.

Her two year old is allergic to everything, milk, eggs, beans, tomatoes, I probably don't even know the half - but she has it totally sorted with a massive list for meals on the fridge, and handy set of wipes everywhere and doesn't even stop her other child from eating the stuff her little one is allergic to because she's 'on the ball' so to speak.

I admire her so much, she has an 'emergency' bag for littleun just incase, with injection handy, her husband is even a vegetarian so she adjusts for hi diet also.

She is probably a one off, as I couldn't be as calm as she is about such a terrifying allergy as her two year old has, but she swears by her fridge menu and 'wipes' .