New egg allergy- looking for support.

[TheJen]

My DS was diagnosed with egg allergy a few weeks ago (he's 9 months). We're to avoid all totally (he reacted to me kissing him after I ate cake) so it's fairly severe. We went to our first birthday party on Wednesday and it was awful . Crumbs everywhere and I couldn't put him down but he was desparate to play. I tried to put him away from the action with some toys but well wishing toddlers kept popping over to cuddle him etc with handfuls of cake and by the time I left I was relly stressed and ready to cry. I can't see how I can go to this sort of party til he's old enough to understand to avoid stuff himself and I don't know how to say to people without being really irritating. Any experiences/advice greatly appreciated xxx

[LucindaBG]

TheJen,

That sounds really very severe - reacting to egg in cake - where the egg has been very heavily cooked - is no joke at all.

There is a tiny tiny upside to the severity: other parents only have to see this happen once to know that you aren't joking when you tell them how careful you have to be.

In the meantime, here's my steer:

1. at 9 months, the chances are that you will be with your DS at parties - he's not going to be "self-propelled" for some years yet and he will learn in that time. You'll be fine - believe me.
   
2. Take wipes and piriton wherever you go.
   
3. Talk to host of party before hand and ensure they know the problem: if you can influence how the party runs - e.g. getting children wiped down after birthday tea - you can avoid a lot of issues before they arise.
   
4. Offer to make the cake yourself. Here's my egg free recipe. living.scotsman.com/ViewArticle.aspx?articleid=3329942
   You can't compromise, but you can help mitigate.

[foxinsocks]

ooh that's good advice!

Is it definitely egg (did they test him)?

Don't worry about being irritating - it's his health you're talking about here!

[LucindaBG]

Foxinsocks:

spot on: you're not being irritating trying to avoid an allergic reaction that would mean your having to take your child away from the party in tears.

I've always found that the best way is to be matter-of-fact about what needs to be avoided and then to offer simple solutions/adjustments. Give the host something to do rather than something to worry about.

One little watch-out: it's quite easy to end up with a long list of food that you can't eat. The person that you are talking to can then think of nothing except that list of food... Instead try to focus on the stuff you CAN eat. Offer suggestions of food that is safe and you'll be on much better ground.

[foxinsocks]

yes, I agree. Or just bring his own food (always the safest option). We normally ended up doing this.

It isn't easy and you will get your fair share of people who roll their eyes but those people will be the ones who, luckily for them, have never experienced something like this so just don't let them get to you.

Like Lucinda says, you'll be at parties with him for a while still and most parties will have a set time for eating, then the food is tidied away so you shouldn't get too many toddlers coming at you with handfuls of cake! I'm sure most hosts would be delighted to either put the cake in the party bag or have it in a set area (i.e. not carried around the house) so it's easier to tidy up!

[wb]

Welcome to the allergy board - and sorry you have to be here.

A lot of people here will know just how you feel - when my ds was diagnosed (dairy and nut allergies) I thought I'd never leave the house with him again. He was about the same age as your ds. A lot of tears have been shed, mostly by me, and I expect he'll add his as he gets older and starts to realise he can't always have what the other kids have.

But. Well, it does get better, or at least you will get used to dealing with it and it will stress you less. Honest. Things like always reading ingredients labels and being hypervigilant about what food is around do become automatic and you will get so used to explaining to people that that will be second nature too (if they find it irritating then tough).

Having said that, parties are always difficult, esp. whilst kids are too young to protect themselves. Our strategy, for now is: if its a party being held by friends/family etc I'm just really up front and explain what the probs might be. So, I'll always bring safe food for ds, and ask that other food is kept out of reach, packaging is available for me to read and that kids don't run round w. food. Mostly, I've found people very understanding and eager to help. Where this isn't possible, or where I don't really feel I know people well enough to ask, well we don't go - or go and leave early, before food is served. It is tough but I tell myself its not for ever - as he gets older, more will be possible.

Also, many kids do outgrow even severe egg allergies eventually. Hold onto that thought.

[aDadTidingsWeBring]

Yes agree with bringing your own food, that way you dont feel you're putting anyone out and you have peace of mind.

And you are going to have to get used to having piriton with you wherever you go. We keep a bottle in the car as well. (keep meaning to write to Piriton people and suggest they sell it in sachet form as well.)

Some positive news to give you hope - you are always told that egg and dairy are allergies they have a good change of growing out of, but you never quite believe it. DD1's last tests showed progress just after her 4th brithday, and she had a food challenge this week for cooked egg and passed!! You think it won't happen, but it can - i seem to remember your children have grown out of some allergies too haven't they foxinsocks?

[foxinsocks]

Yes. Dd outgrew her egg allergy . And she had it quite badly as an infant. She started outgrowing it when she could have it cooked in things (like cakes) and it just progressed from there onwards.

She was around 6, I think, when we could confidently let her eat anything without having to wonder what would happen.

We still have a seafood query but that's easy to avoid for the time being!

[foxinsocks]

How are things with you aDad?

[LucindaBG]

Quite so: DS2 was clear of egg and dairy allergy by age of 2ish, having been really really bad as a baby.

DS1 is still completely off dairy though he's better but still not good with egg: we still have to carry piriton with us everywhere. he'll be 8 in Feb, but to be honest, the difference between 4 and 8 is not huge - it's the adjustments and care you have to take when they're toddlers that counts. It's easier after that.

BTW, the severity of the allergy may actually - and I know this sounds wierd - be a small blessing: DS1 can detect something that will make him react just by a touch to the tip of his tongue. As soon as there is a trace of something that's going to be bad he spits it out and he knows to wash his face, mouth, hands etc immediately.

I suspect that your DS1 will learn to do that pretty quickly.

[foxinsocks]

(ps great news about dd aDad).

What a pain re ds1 Lucinda. I agree with you though - once they are school age (so say 5+), they are very good at managing it themselves. Even before then, from around 3, dd was quite good though I still kept an eye on things.

[aDadTidingsWeBring]

Hey fox, yes ok, v busy this xmas, but fine and that allergy news was a boost. (As was the arsenal beating chelsea the other day - allowing a gloat there as we haven't managed to do it in recent times!)

I'd agree, they do learn to 'manage' themselves quite early ,dd1 from the age of 3, would never just eat something she was offered, sweet, chocolate, whatever...

[foxinsocks]

ha! thought you'd mention that. It's all doom and gloom in the Avram era here. He's not that inspiring (but hard to follow in the 'special one's' footsteps!).

[TheJen]

Thank you so much for you tips. I'm feeling really emotional reading as I realise that I have had pretty much no support since the diagnosis. My DH is worried obviously but practically speaking being at work all day and having little to do with DS's food prep it doesn't really affect him. Everyone else seems to think that the fact that I'm upset about it is a bit pathetic- especially my friend who's allergic to EVERYTHING and things avoiding foods is no bother at all! I think you're right Lucinda, about being assertive and positive rather than sheepish (wasn't prepared for it the first time but will definitely be more so next time). Foxin, in answer to qu it is definitely egg- skin test showed strong reaction and we're to avoid nuts til age 5 but so far he hasn't reacted to other foods- he's had fish and dairy although not shellfish. I think when I left the party I thought unless it's close friends in the future I wont go but reading your suggestions, I realise that I could have just left before the cake was served- hadn't thought of that... duh
Thanks, as always mumsnets makes me feel better! Quick question- do you tend to avoid allergens as a whole family... haven't eaten eggs myself since diagnosis but have had cakes etc in the house but have to admit am tempted to become an egg and nut free house... would that be over reacting?

[aDadTidingsWeBring]

I wouldn't say it is vital with eggs for the whole family to avoid them - although if you are breastfeeding then yes, I would say do cut it out of your diet. We did it with nuts but not eggs and there have never been any 'accidents'.

I think it is hard when you find out, but you will quickly get used to being more careful, and really piriton is amazing stuff at calming reactions within minutes. But try not to worry! At least now you are armed with the knowledge that you have a child with an allergy.

After your test, did you see a nutritionist / dietician? -we have to see one each time, and tbh if you have concerns, they can put your mind at rest, and provide lists of foods you might want to be careful with.

[TheJen]

No didn't see a dietician- wasn't offered actually the thing that really worried me was that the consultant said that no reaction is the same and that although so far it hasn't affected his airway... it could the next time and that after a reaction we should check him throughout the night etc- basically frightenned the living daylights out of me. So although I do feel relieved that we now know he is allergic, I feel worried about how it will manifest itself iyswim.

[wb]

We are a nut free household - I don't even let stuff that 'may contain traces of nut' come in cause I need at least 1 place in the world where I don't have to worry what ds gets hold of.

The dairy is slightly different as his allergy is mild. Dh and I have cheese etc in the evening when ds is in bed but I tend to cook dairy free so we can all eat the same thing.

Egg is a bit tricky. My friend whose son is severely allergic to egg does have egg containing stuff in the house but puts big red stickers on it so everyone (including her ds age 3) knows its not for him.

[aDadTidingsWeBring]

Well, it is true that after an initial reaction, subsequent ones CAN be worse. You can't know for sure.

But again, that reaction would still be calmed by piriton and you would see if after administering it there was no improvement within 10 minutes, you would probably go to A and E anyway. I've never been given the advice about checking through the night myself.

DD1's egg and dairy reactions do / did (with egg) manifest themselves as a wheezy reaction as well as skin swelling etc, and we do have a salbutamol inhaler anyway as she is a viral wheezer.

Perhaps you should ask for a referral to a nutritionist for some advice about diet, and maybe an allergy specialist would confirm what their view was on having an inhaler in just in case for peace of mind. I should add that many allergic children do not get wheezy type reaction.

[mawbroonGotRunOverByAReindeer]

TheJen. I could have written your post just over a year ago. #
My ds reacted to cake and also I touched him with my wiped finger which had mayo on and it brought his skin out in hives.
I was terrified whenever any food came out, especially at parties where the floor would be littered with cake crumbs which he would have eaten given half a chance. We used to sit him on our knee while the cake was around and then sweep up once it was done. I'm sure a party host would rather that the floor was swept of crumbs rather than cleaned of vomit!
From pretty much the beginning, I told him that eggs would make him sick. We were also doing baby signing and pretty quickly, he learned the sick sign and did it when ever I told him something had eggs in it.
Anyway, to cut a long story short, a year on, we can go to parties and he won't touch any food unless I have given it to him and believe you me, he loves his food so it's no mean feat for a 2yo!
As others have said, carry piriton with you. Ask the pharmacist for some small bottles to decant it into and have one in your handbag, one in the changing bag, one in the buggy/baby carrier pocket, one at Granny's house etc etc just in case.
We have been lucky enough to have had no accidental exposures in the 14 months since he was diagnosed, so it is possible! And my feelings of terror about the situatuion have eased!
There are some very odd things with egg in them btw. Easy to avoid at home when you have the packets, but when eating out you should avoid things like gravy, anything breaded, soups with noodles in, and watch for some processed meats too. You also need to take care with say a steak. There may have been an egg cooked in the oil previously. These are just a few examples, I don't mean to scare you, but because it's difficult, you might prefer to bring your own!

Good luck with it all. And I bet that you will be dealing with it like a pro before very long

[alirobins]

Ds 2 has a severe egg allergy and we carry epi-pens and piriton at all times.

At first it seemed I was very unsure of party food and visit to friend houses but it does get better.

Ds went to a christmas party at the local soft play yesterday and they did him his own special plate of food including treats they asked me to confirm if it was safe.

[Tapster]

My DD now 13 months was diagnosed 2 months ago. We've had lots of birthday parties and now christmas parties and its really hard. My heart breaks when I see a birthday cake and she points at it, I distract her with a game or going to see her cousins rabbits. But people often don't realise even family - "are you sure she can't just have a bit", and offering us scotch eggs! Arghhh. Its really hard. I'm BF so I can't eat egg either.

I find eating out the worst - ate out at a restaurant one night ordered what I though was an egg free meal and DD reacted the next morning.

Also I find it difficult when you order food in a restaurant, it can take 30mins for them to check the packets and then you feel am I really sure... I think we will refrain from going out to eat much unless its M&S cafe!

[alimac87]

Hello there, new to mumsnet and this just caught my eye - my DD (6) had been egg allergic since 9 months, and she's also allergic to nuts, seafood, and kiwi.

I remember being very overwhelmed at the time. I hope you're getting some help - the Anaphylaxis Campaign is good, there are some excellent books too...

For parties we just have a total strategy now. I talk to the mum beforehand; I bring a tuck box for DD if i'm doubtful about whether they can really deal with my daughter; if it's someone close, I'll bake eggless cookies and take them, or take a packet of eggless biscuits.

For the cake/party bag DD knows she'll be ill, so she avoids it; and I do a swap of the party bag for some safe treats (tip out the food, and replace it with your own selection. Um. Good luck. It really gets better, but it's awful to begin with.

[keresley]

I too was devastated when my ds was found to have severe egg and nut allergy. But you do learn to live with it and it just becomes a way of life. Parties are a stress though. We always take a party plate of food for our ds to have. We have a nut free house but do have cakes etc for ourslves that have egg in. However, we never eat anythng containing eggs in front of our ds and will often eat the egg ontaining food in the kitchen (which has a baby gate to prevent entry).

The best advice of attending parties other than taking your own party plate of food, is obsessively trail your child where there is food laid out. My dh and I take it in turns to watch our ds every move. It looks over the top to other parents but we are talking about his life here. Also we carry swap box - a tin containing treats/small toys. Our ds knows that if he is given anything he can't have - he swaps it for an item in his swap box.
One positive to come out of his allergies, is that we now spend quality time each week making egg free cakes and biscuits. Rice crispy cakes are great as an egg free alternative.
Oh and one thing that shocked me this Xmas was some of the toiletries I was given as gifts. I just by chance looked at the ingredients and to my horror, some products had nuts in their ingedients.

[Dior]

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