Please help… multiple allergies… distraught

[MTBN1991]

Hi all

i feel beside myself and really would love to hear some opinions. I honestly feel destroyed for my baby. I need to hear that things will be ok. Any experiences etc. Please.

My baby had severe infected eczema and at 6 months was diagnosed with multiple allergies including:

• soya
• milk / dairy
• seeds (including sesame / pumpkin / sunflower etc.)
• Wheat and other grains such as barley etc
• Peanut (he successfully ate this for two weeks following a nut challenge but is now allergic…)
• tree nuts
• Oat (although mild)
• melon
• pollens
• latex

He is now 9 months and the world just seems such a scary place. Even now - despite support from our amazing allergist at St Thomas’ and dietitian at GOSH - we feel so alone. So scared. So worried about his future.

Honestly, feels like some days it can get so heavy I don’t want to be here anymore. But I think about how much he needs me and it drives me on. I love him to bits.

Does anyone have experience of this many allergies; does he have any chance of outgrowing these. We can’t try the ladders because they are IGE mediated allergies…. (This is what we have been told by the specialists).

Is there anything - anything - even anecdotal we could do to maximise his chances. Would do anything for him (as I know others would) but we are willing to try anything to give him as normal a life as we can.

Currently I have excluded eggs; milk; soya and nuts / seeds from diet. He is exclusively breastfed (with weaning).

Thanks so much in advance for reading this and for any comments. I can’t explain how grateful I would be for any advice or support.

Sorry to add, chickpea and peas etc are on there too.

I don't have advice other than to join some supportive Facebook groups. The parents living the realities of life with allergies are the experts.

DS16 is transitioning from child to adult allergy care at St Thomas’ and is in his final year of immunotherapy for tree and grass pollens. He is allergic to:

nuts
seeds
legumes/Beas/peas
peanuts
stone fruit
tree fruit
carrots
celery
lettuce
parsley
milk (sometimes)
soya (unless highly processed)
nightshade (sometimes)
POLLEN

it is scary but it is amazing how quickly they begin to own their allergy and recognise their limits. Ditto their reactions. We are v lucky in that so far he has been able to manage his reactions at home, and that normally the second he puts something in his mouth he’ll start reacting and can spit it out.

Hardest things are how spring/summer decimates him, if we had our time again we'd move to the coast as he has a 90% reduction in symptoms there. Other is that people think it's an excuse to avoid 'healthy' food, his primary school were guilty of this until they saw what happened when he accidentally ate celery. Kids meals/parties often offered veg sticks too which were obviously a no-go.

I know it seems scary but you'll be expert in your child and their allergies quick enough, and will learn if they can tolerate any traces or if the foods need to be completely banned from the home.

My dc has multiple food allergies, dairy, eggs, wheat, some fruit, some nuts. Pollen, dust mite, cats, dogs, maybe even some others unknown to us.

He had eczema since 1 week old, diagnosed at around 6/7 months old. He was EBF too, so I had to avoid everything he was allergic to. I BFed until he was about 2 years old.

Under the dietitian, he was under very restricted diet. He grew out of nuts allergy(which was weird they thought it was unlikely at first), but still allergic to everything else still, at 14 years old.

It was really overwhelming at first, but after a decade+, we are pretty much ok. He carries epipen, and it's still a worry but as he grew, he became more careful himself and less worry for me.

It's difficult to manage restricted diet, but you'll get used to it. There are many alternatives these days, and the doctors/nurses/dietitian could be a big help.

Good luck, I know it's hard. Hopefully your dc grow out of at least some of them.

Have you been in touch with the Anaphylaxis Campaign? They're a great charity who support families with allergies and have some good resources for children (and schools when the time comes). 💐

Thank you so much for the responses, they have been really helpful. For everyone dealing with allergies, best of luck. You guys sound amazing. Sending you all strength and love ❤️

I know a boy who had a huge list of allergies like that. Once he’d been on a very restricted diet for a couple of years they were able to reintroduce everything except gluten. He’s got so much inflammation in his body he was reacting to almost everything but once his body settled down he was much better.

The Natasha Foundation might be useful to you. She also had many allergies bless her soul and her parent's campaigning has already made changes happen.
My dd has many allergies too but all environmental it seems..dust, pollens, cosmetics etc. The nurses couldn't believe I didn't want her tested for peanuts when she was so allergic to everything else.

It's been trial and error plus daily antihistamines. She thankfully outgrew the excema. She has inhalers for a while but outgrew that or maybe the antihistamines reduced the wheeze.
I was sure my dd had a latex reaction but tested negative so we still don't know what that was (worst reaction so far).
It is scary, but hopefully gets easier.

Thank you very much for the above 💐💐 I will take both comments on board.

Hi OP
My boy is two now and he also has multiple allergies.
It's really hard and I've been on the verge of depression at times.
I always get really anxious before a allergy test or food challenge.

Sorry, posted too soon.
In our case he developed his nuts allergies a bit later. At 6 months he was only positive to peanuts, but it was tiny. Now he's allergic to cashews (had a horrible scare), pistachios and somehow sesame... he used to have humus all the time and then on day he started reaction.

So im sending hugs to you. I hate allergies and it is such a big part of our lives. Im always on alert mode even when he's at nursery and I'm working from home.

But hopefully it gets better

I'm sorry OP, it's such a shit hand to be dealt, isn't it? DS is 2.5 and allergic to dairy, egg, legumes (except soy and peanut), fish, hazelnut, Pistachio, cashew, Sesame and kiwi.

He's had airborne reactions to lentils and eggs (vomiting and hives) and gets contact hives from dairy.

I think the first year was most challenging as it was such a steep learning curve. We had to find our new "safe" foods, educate friends and family, do loads of online learning, try to get his ezecma under some semblance of control, find an allergist willing to do food challenges etc.

I was breastfeeding so stopped eating all the foods but gradually reintroduced them to my diet when he was 21 months. Weirdly he didn't react anymore and he still BFs without my diet being restricted.

We now have more of a rhythm and finding food in shops is easier. I remember crying the first time I went to Sainsbury's and every label I checked listed at least one of his allergies.

We've learned to always bring lots of safe food with us, as well as tonnes of wet wipes for wiping hands and surfaces. When we leave the house we ask our son what he needs and he shouts back "Epis!". We've also just started telling him that "you can't have that, it has dairy", or "Peppa's eating eggs but they make you sick so you don't".

I try to find food fee activities like story time at the library, swimming, some soft plays, forest school etc. Our local mother and toddler's were very accommodating and made their biscuits allergen free. Mostly, i avoid cafes and restaurants when he's with me. I've learned to always speak up when out and to leave if I feel unsafe.

We've chosen to not let him eat at restaurants for now as we feel we just can't trust all staff members to "get it", especially with the cross contamination risk as he's so reactive to even trace amounts.

We host most dinners and BBQs for friends now as we feel more in control and can relax knowing there are no allergens present.

"Parents of children with multiple food allergies on FB" is a good resource.

I think, ultimately, my top advice is to do what you feel comfortable with. Never feel pressured by friends or family, as many won't fully understand IGE allergies.

We try hard not to let DS' allergies define him. We're currently on holidays abroad and he's having a whale of a time!

Oh and as for outgrowing, this is the dream!

I've read a lot of papers and I know tolerating baked milk / egg and giving them regularly is important for outgrowing dairy and egg allergies. We don't qualify for challenges yet as numbers are too high.

There's a lot of talk about OIT and other possible "cures". The only one I'm aware of offered in the UK is Palforzia for peanuts. As DS isn't peanut allergic I don't know much about it.

We give probiotics because we figure they won't do harm and we try to keep on top of his eczema with steroids as we've been told a broken skin barrier can lead to more allergies.

I've heard you should offer a large variety of food when possible, so we try to e.g. give the nuts and seeds he's not allergic to.

There's a theory that giving "similar proteins" may help. So e.g. regularly feeding mango for cashew allergy or chicken for egg allergy. I'm not aware of any data that this works but, again, worth trying.

With regards likelihood or outgrowing, unfortunately I think chances are worse when a child had multiple IGE allergies. Likelihood also decreases with high IGE numbers and SPT reactions. Similarly, reactions to traces of food doesn't bode well and those who react to baked egg/milk are statistically less likely to outgrow.

Ultimately, some kids do outgrow, so let's hope ours do! The body is a wonderful thing and the immune system is unpredictability to say the least.

(@MTBN1991) sorry, forgot the tag snd I know you posted a little while ago!

Wow thank you so much for the above, really comprehensive answer ❤️ I really hope things go well for you. Thanks again. Your answer has been really useful.

Hi! I came across this thread as my baby also has multiple allergies and wondered how did your baby’s allergies evolve and how are you finding coping with all after a few years?
It all feels very overwhelming at the moment.

Hi @ioanameme

The hardest was the first 2 years as we got our heads around everything, discovered everything he reacts to (dairy, egg, nuts, sesame, peas, and a few more).

Now at 5, life is easier and allergies are a part of our life just like anything else.

We carry epi pens everywhere, 2nd nature.
We read labels of everything, but we're also really used to the products he can have.

I remember crying in the food aisle in the earlier days, but now we've got tonnes of food options, because we've adapted.

We've started immunotherapy for several of his allergies and he's grown out of peas and sesame.
He's tolerating it really well. It's a faff, but it's opening a lot of doors. Apparently the earlier you start, the better chance of outgrowth and lesser chance of reactions.

Supermarkets offer so many options now. And the more you stick to whole foods the easier.
I stopped buying most of the "free from" stuff as they're expensive and often not very nice.

Honestly, you've got all of my sympathy as the start of the journey is tough and scary and alienating.

When people told me it got better, I didn't really believe them. I spent so many nights worrying ahout DS's future. Genuinely, he lives a normal life in a normal school. Even eats in the canteen!
He knows what he has to avoid and it's just normal life for him.

We live in hope of growing out of dairy one day, as that would be a real game changer. Ultimately though, life is great even with the allergies, so it's OK either way.

Thank you very much for taking the time to share your experience. Keeping my fingers crossed your little one will manage to outgrow as many allergies as possible!!

My daughter has 20 delayed allergies! She's 4 and not showing signs of growing out of them. She's handling accidents better but we still have reactions when we try ladders even on the super slow size of a grain of rice portions!
The first 18 months were hard really hard but we have adapted. I can tell you the ingredients in most foods in the supermarket! We stick to whole foods. Eating out is tricky, being spontaneous id tricky but otherwise we lead a normal happy life. We've been lucky that nursery and school have been able to accommodate her allergens and she has school meals just with her own bespoke menu

Hello - sorry I just saw this as I have not been on this for a while. My son didn’t naturally outgrow anything. He is 3 now and we have started taking him to the Food Allergy Institute in California where we are getting through his allergens through treatment (it’s called TIP). He has cleared some already. It’s amazing. There is also immunotherapy available in the U.K. and a new drug called Xolair. There is hope for the first time that things will be better for allergy kids soon - I hope you’re doing okay