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.

No wonder you are feeling lost teapig. I haven't got any direct experience but one of DS friends is like this. Her mum always brought food for her so that she could eat while the other children set, at playgroup, birthday parties, lunches etc. She also asked if she could wipe our children's hands after they had eaten. No one minded a bit.

Hope someone comes along soon who knows more

Thanks jilted. It's good to hear of your experience of DS' friend. Good to know no one minded hand washing.

Hi teapig I would suggest you make contact with the anaphylaxis campaign, they run workshops for parents and I personally found them very helpful. (my child is anaphylactic to nuts and intolerant to cheese and kiwi) but there were many parents at the workshop in a similar situation as yourself. They would be able to help re the wiping of toys etc or the need or not for it. I remember feeling totally overwhelmed and terrified but I'd like to reassure you it gets much calmer and easier once you're used to things . Talk to the dietician at the hospital for advice. Yes we eat out. Speak to the chef when you eat out, ring and tell them when you book. toddler groups / Parties can be tricky but manageable, take a lunch box. Talk to your child no matter how young so from day 1 (even if a baby!) they know how to keep themselves safe. They grow up being very careful luckily (everyone at the workshop echoed this) Probably gets tricky again when they're teenagers lol but don't worry too far ahead!!!

My DS has multiple allergies. He is still allergic to milk, eggs and nuts. He had outgrown soya, lentils and chickpeas. Also possibly outgrown sesame but we are waiting for a food challenge to confirm. He had outgrown beans or so we thought, but seems to have started reacting to them again.

How stringent you need to be really depends on the reaction. DS used to react very badly to milk to the extent that we couldn't go in coffee shops where they were steaming milk and if we kissed him after drinking tea he would react. So we were very stringent about wiping things down, not sitting him next to someone drinking milk. He has definitely become less sensitive and no longer reacts on skin contact so we can relax a bit more now.

We have never had a problem eating out. The vast majority of places were happy to cater for DS's allergies. My tip is to stick to chain places like Nando's and pizza express as the food will be standard across all and they will have detailed allergy info to hand.

I've found the riskiest situation to be the grandparents actually. They seemed to find dealing with allergies hard to grasp. MIL tried to give DS chicken gravy with milk in on 3 occasions. We wrote out detailed lists and helped find standard meals they could cook that they knew were safe.

Oh and chain restaurants like pizza express now do gluten and dairy free options, like dairy free sorbet.

It is daunting at first, but believe me it does become easier. You build up a repertoire of safe meals and it becomes second nature.

Thanks for the advice and support ladies. It does feel very overwhelming.

My instinct of course is to protect DD at all times but I worry that with eating out there is always a risk that an allergen may have come into contact with the food. How do you mamage the worry?

Whoops posted before I meant to, I also meant to ask:

Do your DCs miss out on anything? How do you make sure they don't feel they are missing out?

I've been in tears each day thinking that DD won't have an ice cream like other children. It sounds soppy I know but I feel so sad that she may miss out so many joys of childhood

I think that there's always going to be occasions when they miss out. I think the best you can do is to help them deal with that. DS is very stoical about it, but I do try to make it up to him a bit. I always take a bag full of nice things that DS can eat to parties. There have been occasions when he has had better stuff than the other kids are getting.

It can be hard. I remember being at a party with DD and she wanted a fairy cake, but I couldn't let her have it as she's allergic to egg.

When we were in Italy we didn't eat any ice cream as we didn't feel it would be fair to eat it in front of him. Until the last night when my Dad offered to take DS on ahead so we could eat ice cream.

Would you believe when we went into the ice cream shop they had rice milk ice cream!!!! I ended up running down the street after my Dad and DS with two ice creams in tears because DS could have some.

How do I manage the worry? I don't have a particular way of dealing with it that I can pass on. I think you just get used to it.

I think the level of worry probably does depend on the likely severity of your DC's reaction though.

dairy and soy free ice cream

I also used to make my own with oatly cream in an ice cream maker.

I could have written every word of your post a couple of years ago!

It is an incredible shock you have experienced, both seeing your child so ill and then getting the long list of allergies.

You will learn to adapt and relax though. I have travelled all over europe with my allergic ds and we have coped fine (although I do take a small suitcase just filled with food!).

You can get dairy and soya free ice creams, or my son prefers sorbet anyway. If we're at the beach or something he is quite happy with an ice lolly.

He started nursery a month after his big reaction and they have been brilliant (I was terrified but they had lots of experience)

There are lots of good free from products out there now which makes life a lot easier, both in the supermarkets and specialist websites like goodness direct

I do find it hard at birthday parties but at present I think I find it a lot more upsetting than Ds, he seems quite happy to tuck into his special bag of food and eat his special cake. For his birthday I have made it so all the food is safe for him to eat which makes me feel a bit better about him missing out at other times

Ds has outgrown his wheat and soya allergies very recently (just before he turned 3) and is has made life a fair bit easier, but in reality his is now used to the meals/treats he had before so things haven't changed as much as I expected!

I completely understand you worrying about them missing out and I have got upset many times about it but actually I think we place too much importance on food and there is so much of the fun of childhood that they don't miss out on.

I don't tend to eat food he can't have when he is around (used to have sneaky chocolate breaks when he napped ) but other people do and he seems quite accepting of it. I make sure I always have emergency sweets/treats in my bag so there is always something safe for him to have so he doesn't feel left out

It will become normal to you! But I realise that is hard to believe now

Forgot to say, at present when we eat out I just take a special picnic for ds and explain the situation, no one has ever objected and he is excited by his picnic so doesn't seem to mind. It may change as he gets older but a lot of places are well geared up to cater for people with allergies now

You get used to it. It is overwhelming to start off with, because, well, it is overwhelming. But, so is having a baby in the first place - and, that becomes the new normal with time!

Take the advice of the professionals, remember that this will be all that DD knows - she'll miss out on some stuff and she'll get some other stuff instead. The "other stuff" won't be the same, but, it's not without value. It's a bit weird, that's all - my son has just spent a great day at the hospital Making Stuff (killing time waiting for results) with a play therapist who was genuinely interested in what his creative process was (that was a woman other than me, I am only a passable faker).

You'll learn as you go along. There may be some times where you land up at a+e with a pink, itchy kid and a sense of terror - but, that's what steroids are for.

Be grateful for our free care at the point of need. And, know what the fastest routes to A+E are. And, how to call 999 just incase. Google is your friend, with lots and lots of egg free/dairy free/everything free recipes.

It's manageable. You'll learn to manage and it'll become the new normal.

Thank you ladies, it helps so much to hear your experience.

In my weepy state I hadn't even thought that sorbet and ice lollies might be ok. It sounds silly but it helps to know there are those options and she won't completely miss out.

One of the things I find hard to gauge is how we manage the risk. We're wiping down supermarket trollies, I'm not sure how much I should worry about friends touching her when we bump into them in the street or how I should handle going to people's houses. Can she lay on a mat with other babies and play with the same toys or is that risky?

We are meant to be staying in a hotel soon, do you guys hoover when you stay somewhere and clean all surfaces? What about bedding?

Have I turned into a paranoid wreck or is this what has to be done.

I find it impossible to accept there is a daily risk to her that I can't control even when I'm there.

How allergic is your daughter? Most people don't have to take those sorts of precautions - infact, I can't think of anyone I know who does.

Most folk have a kind of warning window - so, you get an exposure, there's a reaction, you take the medication, if that doesn't work you get help. It's exceptionally unusual for an anaphylactic reaction in a diagnosed person to happen so quickly that there is nothing you can do.

Is your wee one so allergic you don't have any slack in her reaction time? Or, are you so fearful that you are trying to minimise any risk?

Whereabouts are you? There will be an allergy nurse at the hospital, might be worth a chat.

But, to answer your question, nope, I don't hoover hotel rooms. Basic eagle eye scouting out allergens wherever we go, hand washing, piriton in bag and monitoring of signs and symtpoms - so, will get him to GP if wheezy or eczema's flaring up. A+E if no response to piriton and urticaria is spreading, or, ambulance if there's facial swelling.

Of course, he's bigger now so it's much easier as he can communicate himself if he's itchy.

Truly, you get used to it. It's terrifying to start off with, but, you'll adapt to it. You're going to have to, or you'll send yourself dolally.

Obviously each child is different but my son had an anaphylactic reaction to cows milk (also at 6 months) and I remember feeling like you and terrified that anything could trigger a reaction, but you will soon learn what is ok.
I think it is sensible to wipe down tables in cafes/ high chair trays/ etc and to ensure friends etc clean hands if they have had milk products, but even then this type of accidental exposure has only ever given my son severe hives (urticaria) at worst. I was very nervous the first few times we flew and wiped down everywhere and gave him preventative anti histamine but I have relaxed a bit now.

Baby led weaning is a good approach to help avoid accidental ingestion as the one time someone gave my son bread with the wrong butter on (!) he just simply didn't touch it.

gussie, she's very allergic. After an ounce of formula (before we knew about allergies) our first signs that something was wrong was an unusual cry, within mins she was struggling to breath and had swelling of the face and lips. She's got 5 known allergies and apparently that's very unusual at just 6 months old.

I think though I'm pretty terrified and I might be getting a bit paranoid. I just spoke to the allergy nurse and she said a skin contact reaction wouldn't be as severe. She did say I should take DD her own toys to play groups but to be honest I can't see that working and so I'll just wipe everything.
I think I may be in danger of driving myself crazy. Thanks for the words of wisdom, I think I'll leave the hoover at home when we go to the hotel

tired, it's good to know that you felt the same at first, I guess it's natural.

It's great to know that you travel abroad with your DS tired. One of my worries was that DD would never be able to travel but I guess if we take a suitcase of food with us that's totally possible.

gussie and tired, have your DCs grown out of any allergies they originally had? Do they carry epipens and if so have you ever had to use them?

Teapig, my ds2 has dairy and peanut allergy, he's already outgrown his egg and soya allergy and he's only 19 months. It does get easier and I've discovered some good alternatives. And if you cook most things from scratch it's easy to avoid, processed food has a surprising amount of dairy in it! I never knew so much shop bought bread had soya flour in it.

Also, my lo has his most severe reaction from eating something. He'll have a skin reaction if his siblings drink milk and kiss him for e.g. We just dose him up with piriton and observe. He's been prescribed an epi pen now because of his peanut allergy. So basically, what I'm saying is you manage the risk as best you can then take medication for any eventualities. It is hard and can get a bit boring, but.it's so good you've found out now. Sending you heaps of sympathy and strength!

That's grim, Tea. However, at least you know about it now and have got information and resources to keep her safe. That's worth hanging onto.

Also, things have really changed since we were kids. People are far more aware of allergies, foods are all labelled, and if you are in the UK then treatment is free.

Yep, my youngest (5) has grown out of all his allergies - he was very allergic to egg, sesame, almonds, peanuts and hazlenuts. Is now totally fine, though, we avoid nuts anyway. And, once I realised that hummous is made with sesame, well, he was a lot better...doh.

The middley (8) is still allergic to some foodstuffs (nut things) and remains off-the-scale allergic to environmental triggers (dust mites, animal hair, nettle stings). He's got an epi-pen, but, we've never used it. touches wood

You are reacting in a way that is totally normal. It's scary. You've already grows a spidey-sense about how she looks/sounds, you'll spot what she's near, you'll develop a calm but clear way of telling other parents "no x, y, z for snack, thanks, and can you not bring a,b or c when we're here, please?"

And, I'm a somewhat haphazard parent. If I can manage it, you can. x

It is impossible to predict future reactions and individuals are all different but knowing what her triggers are will help.

This book is old but has some good recipe ideas (not all suitable by any stretch!) and some good information on alternative sources of nutrition including suggested foods to introduce at nine and twelve months. There are vastly differing opinions on whether to delay introduction of potential allergens in the absence of evidence of an allergy, but ultimately this will be your call. There are plenty of second hand copies of this book available.

If you have been breastfeeding she will have getting some of these foods through your breastmilk. Eliminating these from her diet may well strengthen her immune system and reduce the severity of possible contact reactions. Research in this area is weak and it is very difficult to be sure that you have removed all allergens from your child's environment but this is my opinion based on observation of my children.

I tried hard to push for more extensive testing when my DS was clearly still reacting to things we could not identify and his IgE levels were high but I could not convince anyone to do broad spectrum tests for multiple substances, perhaps others have had better experiences in this and can advise. If she has bowel issues, has had colic or has eczema, I would push very hard for further tests especially if you don't see an improvement in other symptoms within a few weeks. Saying that, they have tested the big hitters and if you are cautious about gluten grains and possibly oats at this age, you are already reducing your risk.

Thank you lovely ladies. This does make me feel much better. The allergy is helpful but there's nothing like hearing from other mums who have been there.

I think I'm slowly getting my head around it. I felt a bit better today. Rice milk actually tastes ok and DH tells me he has found an egg substitute so that should make baking easier.

gussie I think of myself as a haphazard parent so good to even us haphazarders can do it

misty, thanks for the link that is really helpful.

I'm avoiding oats. Stupid question but what are gluten grains? I'm avoiding gluten but is there anything else I should be aware of there?

DDs eczema comes and goes and despite my diet change as I'm still BF it hasn't properly cleared up. I reckon it might be due to another allergy but as she is so young they won't take more blood for some time. I'm going to keep a food diary in case that helps to figure it out.

Forgot to say, Koko milk (derived from coconuts) is good as it's non-dairy and non-soya (which is amazingly common) and actually is alright in tea and for cooking. I make a mean white sauce with it now.

A good website for any alternatives is direct. Have a look, you can filter for all the things you need to avoid.

goodness direct that was meant to say, not just direct...grr

Oh and koko you can get in Sainsbos and Tescos etc.

Hello Teapig. I second coconut based milk. I think it was Kara that I had, closes to cow milk for substitutes in tea I found.

My DS has multiple food allergies. He has never to date had an anaphylactic reaction (touch wood) but reacted even to trace amounts with screaming and hives. He started with milk at six months but has since added several other items to the list including egg and nuts.

Like you, the diagnosis knocked us for six and every time a new allergy developed, the whole cycle of worry and despair started again. We are now almost two years down the line and happily, he is showing signs of outgrowing milk and egg. We also eat out a lot more and the allergies are just another fact of life that we juggle into the mix.

Some restaurants are better and safer than others (Nando's, Pizza Express, Wetherspoons are good with allergies) and the range of free from stuff now is amazing. Bessant and Drury do a coconut based ice cream (really posh stuff, the chocolate one is available in tesco). My son has been to quite a few parties now and enjoyed every one of them. I bring him a lunch box full of safe party foods and he has whatever is available at the party that's safe for him (jelly, haribos, fruit etc). To be honest, they spend so much time running around like loons that the food is not really a major attraction. I also make him fairy cakes and buy cake toppers of his favourite characters to stick on. He doesn't feel left out and I often bring extra because the other kids want them too.

I gave up dairy when he was first diagnosed for a few weeks and it made no difference to his eczema so I have reintroduced it to my diet. He never reacted to the allergens in my breastmilk so I didn't feel it was necessary to cut it out. Because of his allergies I ended up breast feeding him for a long time so I needed to make sure my diet was as good as it could be.

Everyone copes with it differently, and this board has been a fantastic source of knowledge and support. To paraphrase a wise poster on here (cannot remember exactly who) 'Welcome to the club no one wants to join!'