dd's peanut anaphylaxis - feeling guilty and fearful

[suzyj]

long post, sorry, have to get it off my chest.
We had a very weird and stressful weekend because dd had to be rushed to hospital on Saturday morning with a very severe anaphylactic reaction to peanuts (we think). First ever taste of sunpat smooth on half a slice of toast and before she'd even finished it, she started crying. Thinking that she'd had enough and wanted to get down, I started wiping her face with a wet flannel and noticed to my absolute horror that her lips were starting to blister and pucker (making my chest hurt, just typing this). Rang ambulance and watched as, screaming her head off, dd's face began to swell: lips/cheeks 3 or 4 times normal size, eyes swollen shut because she'd managed to rub it into them and ears too. She was drooling and nose and eyes streaming. Rapid response man came and gave her a shot of adrenaline which had stabilised the reaction by the time the ambulance came. When we got to A&E, they rushed us into a resus room in case her breathing went, they gave her two more adrenaline shots and loads of antihistamine and then connected her up to a beep-beep machine. Mercifully, cos we were both crying by this stage, she gradually calmed and went to sleep. As she slept, the swelling was going down and by the time we were admitted, there was only a rash across her face, chest and stomach and slightly swollen eyes and lips. We were in hospital until Sunday afternoon under observation and have been given Epi-pens to carry with us to help when it inevitably happens again. We're on a list to see an allergy consultant as soon as possible, as they were all worried about the severity and speed of the reaction.

She's back to her normal naughty old self now and doesn't seem fazed in the least by it all, but dp and me are in bits about it. What a life sentence, eh? Still trying to get our heads round it and what it will means for her as she grows up.

I've found a couple of threads on here which give me a few good leads for research but am feeling so doom-laden about it all. Can she ever have a normal life?? What are your experiences out there?

suzyj that is one of the most frightening posts I have ever read. You must have been terrified. How old is your dd?

Sorry I have no experience of this but just want to wish you well.

you poor thing Suzy, what an ordeal to have gone through. I don't have any experience of this, just wanted to add my sympathies.
I think it's all very fresh at the moment and you're probably going through the "what if" scenarios, but remember everything worked out this time and now you are aware of the problem and are taking steps to make sure it won't happen again. If it does you now have the means to tackle it with the epi-pen.
take care of yourself.

Sounds terrible Suzyj - it's my worst nightmare! So far ds hasn't displayed any sign of a serious food allergy, but it kind of runs in my family.

How old is your DD?

These allergies normally occur the SECOND time they have come in contact with the allergen. The first time sensitises the body to it but there's no serious reaction. Your body then builds up antibodies so the 2nd time there is this MASSIVE over reaction (as you witnessed).

There was absolutely nothing you could've done. You weren't to know and now you do there's plenty you can do to avoid it again. There are a few MN's whose children have peanut allergies.

Please please please don't blame yourself!

Glad she's okay now.

Sounds terrible Suzyj - it's my worst nightmare! So far ds hasn't displayed any sign of a serious food allergy, but it kind of runs in my family.

How old is your DD?

These allergies normally occur the SECOND time they have come in contact with the allergen. The first time sensitises the body to it but there's no serious reaction. Your body then builds up antibodies so the 2nd time there is this MASSIVE over reaction (as you witnessed).

There was absolutely nothing you could've done. You weren't to know and now you do there's plenty you can do to avoid it again. There are a few MN's whose children have peanut allergies, so I;m sure you'll get plenty of advice and reassurance.

Please please please don't blame yourself!

Glad she's okay now.

suzyj, you have my heartfelt sympathy, but don't be too alarmed, a nut allergy is quite manaageable and your child will learn to manage it herself as she gets older.

My DD now 17 has been living with this for years, she has been to hospital on a blue light 3 times. She had eaten nuts all her life and suddenly developed it.

She has been on numerous holidays without us from the age of 11 and had no problems, she even went on the World Challenge to Peru with no Spanish or local language and survived! She has carried an Epipen everywhere and educated all her friends, they 'look after' her when in strange places and check things more thoroughly than she does!

Robinw also has a child with a nut allergy, much younger than my DD, so I am sure she will respond with lots of advice.

Meanwhile, ask any questions you like, take care.

Suzyj - what a terrible experience for you all. My sister's dd had an allergic reaction to almonds just the way you described when she was 2 years old. She is now 12 years old and has had to use her Epipen a number of times throughout the years. I am not trying to worry you, but yes you will probably have allergic reactions in the future because it is not always known what foods contain nuts. My neice is allergic to actual nuts - we don't know if she is allergic to peanuts(they do not belong to the nut family), so there are ground almonds in lots of things like cake. A mum made a birthday cake and added ground almonds thinking that was OK and that it was a peanut allergy my neice had. She obviously quickly reacted.
The good thing is that my neice is very consciencious about what she eats. My sister and her can spot the signs of allergy very quickly and give piriton syrup to avoid a major reaction. My sister has a number of Epipens - one for home, a spare, one for the school and one for Gran's house. The school is on the ball also. It will take a while for you to settle with it but you will become experts on the condition. She will lead a normal life and you will all manage to cope with it, honestly. HTH.

I'm so glad your DDs fine now, Suzyj. Very very scarey.

It is usually the second encounter that triggers an allergic reaction but it's very easy to get sensitised to peanut without eating peanuts IYSWIM.

Suzyj, huge huge sympathies. My son is allergic to peanuts but has never had an anaphylactic reaction to them, although he's had quite a few to milk (he's no longer allergic to it).

She will have a normal life, but getting used to it is really hard, especially at first. I wish I could say something to ease your mind... it does get better.

A word on some of the peanut allergy websites: for as much as I rant and rave, I've found some to be OTT and much much less than helpful. If you come across something that makes you feel worse, then don't go back to it. (That would seem obvious, but it took me a while to realize it.)

Feel free to post or email me with any questions.

I half heard something about this on Radio 4 yesterday, possibly Woman's Hour. It might be interesting, try the website or their helpline which both usually have lots of good info and links. Sorry that's not much practical use in what must be a horrible and scary experience.

how scary suzyj,i'm glad she's ok now,i've no experience but i'm sure you'll get lots of reassuring messages
lol xxxxxx

Suzyj - how terrible for all of you. I don't know if it's possible to make you feel less worried at the moment because it is all so new ... but lots of people DO lead normal lives with this kind of allergy. I know several people with severe anaphylactic reactions to various things and they do lead happy, fulfilling lives. Thank goodness your dd is alright, and you are now going to be equipped to deal with any further reactions. And of course she'll have to learn to be careful about food once she can take responsibility for herself.

I assume you're living in the UK? In which case you're lucky, because awareness of nut allergies etc is really high here. I have a non-anaphylactic (but very unpleasant) reaction to walnuts and pecans and I find that people are very responsible when I ask about ingredients.

RobinW has posted some very useful information about nut allergies on mumsnet. I'm sure you'll get great support and info here.

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Suzyj, I'm sorry to hear you both had such a horrible time. You obviously did all the right things at the time and as others say, you now know how to deal with this and can get lots of support from Mumsnet, too.

Thank you for your responses! I've just re-read my post as well and it does read as totally terrifying doesn't it? Sorry CountessDracula and thank you for your kind words everyone!

DD is just 1 year old and I'd thought nuts were fine from now - how wrong!! The what-ifs and if-onlys are clouding out any sensible thoughts about managing strategies at the moment but it is heartening to read about your dd, alibubbles, and your friends, pidge.

Podmog - is your info pack emailable? Her first day back at nursery is tomorrow and it would be great to be able to go in a bit more prepared. I'll contact you with my email address just in case.

I've found reference to the anaphylaxis site and will do a bit more research when I'm calmer (seems to come in waves, this panicked horror at her future, usually at mealtimes...)

SuzyJ - I was told to keep Peanuts away from DS until he was 3 years old. But when it became obvious he had atopic tendencies my HV told me to wait as long as possible, perhaps until he was 7 years old! A tad extreme.

The "rules" differ from area to area so it's really confusing.

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thanks, podmog, and great tips, robinw. I'll print out this thread to show my dh tonight and we'll look on the anaphylaxis site too. I am feeling better right now knowing that you lot are out there - thank you for all your time!

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HI SuzyJ - just wanted to say I'm thinking of you all. It must be a huge worry for you, but try not to get too stressed out. Also, I did a tv piece once about peanut allergies and the problem sufferers faced with so many foods being labelled as "may contain nuts". We tested a load of foods that had these labels on and not one had a single trace - but I quite agree that it is better to stay on the side of caution than risk it. However, there was one company we found - Kinnerton confectionary - who took this problem very seriously. The guy who ran the company was dividing his factory and setting up completely separate production lines for nut products and non-nut products - at great expense to himself - so that he could eliminate the risk of cross contamination. I know they do chocolate - they may also do biscuits/cakes that are guaranteed nut free. Anyway, they have a website
here - it's quite fun for kids as well as they have a club for nut allergy sufferers (the termi-nutters) and competitions etc. Hope this helps all you non-nutters!

Thanks RobinW and willow2 - nursery were surprisingly vague and uninformed about this when my dh dropped her off. Her keyworker said that they'd had a child once with this allergy and that they might have a video somewhere. EEEK. Was worried all day, thinking we'd end up having to move her, which I really don't want to do. Anyway, went to pick her up, ready to get into a fight about it, and they'd tried to get their act together in the meantime. They'd written NO NUTS on all her food charts and checked in the kitchens that there weren't any used (none, they said). They are scared of the EpiPen and unclear of when it would be necessary. Yes, we have bought Piriton and left that with them too but this seems to have confused them even more: i.e. they asked if this was a preventative measure and if should she have it everyday! They were also surprised when I mentioned things like perhaps being careful of old cereal packets used in craft lessons, etc - how militant should I be?

So, I guess I'm asking what info I should give them to help. I've found the anaphylaxis site and printed out the pre-schooler agreement thing, which we will fill in as soon as we have all the info (we're awaiting a consultant appointment). If the video is no longer provided, would we have to train them how to use the EpiPens ourselves? Where can I get a trainer pen? The hospital didn't provide one or in fact really show us much how to use it. Is it our responsibility to make sure her nursery can keep her safe?? What else have you done? Where can I get a medicalert bracelet? So many questions!!!

willow2 - it's interesting about what you say about the 'may contain traces of nuts' food. We are avoiding them at the moment but will see if this is necessary in the future. The Kinnerton fellow sounds tops!

And, yes it is heartening to read that no child who's had an EpiPen shot has ever died and that many of you have kids who have grown out of allergies, even severe ones.

Thank you all for your supportive thoughts and detailed responses. They are vastly appreciated - even by dh who doesn't 'get' mumsnet. I'm sure I'll be coming back with more questions, if that's okay - tell me to bog off if it becomes annoying!!