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?

me again. Just found out that 'on an urgent list for allergy clinic' means a wait of about 4 months. Not really unexpected of the good old NHS but... we're off to New Zealand for a 6 month work placement in December.

My GP said that the healthcare there is probably going to be better than here but my question, if there are any NZ mothers out there, is how do I get registered/seen? What should I bring from my doctors here to help this process? I'm going to start a new thread on this as well, just to make sure this particular question is seen by any Kiwi mums.

Podmog - nursery are outwardly fine and confident, but i'm not! This may be over-cautious mum syndrome but I'm going to make sure they have more info and lobby for some training - does this come via the allergy clinic we're being referred to or can we get someone in from the anaphylaxis organisation to do it?

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Robinw, i'm sure you meant kindly with your EpiPen offer but under the Medicines Act 1968 Suzyj would be breaking the law if she has an EpiPen without prescription, while in the UK.

Also, EpiPen is a prescription only medication and can only be prescribed by a doctor, not by lay persons.

Odd comment, sparrowhawk. Can't break the rules now, can we? Do you drive within the speed limit (pursuant to the Road Safety Act of 1967)? Epipens save lives with no contraindications, but speeding kills .

Luckily, suzyj was prescribed epipens.

seeing as our area is plagued, with sometimes fatal results, by speeding drivers, yes, I DO drive within the speed limit, even though it seems to annoy some other peopel. In any case, two wrongs don't make a right, jj.

hi again suzyj
If you cannot get hold of videos or epipen trainers before you get to NZ or need to get them again (not sure if dd will be going to kindy here) the NZ allergy association will mail them to you once you have subscibed for a small fee. The trainer is then yours to keep. There is a link from the UK allergy site as cannot remember the website address off top of head. Not sure about Christchurch but they seem pretty clued up here on nut allergies. We are about 30-40 minutes south of Auckland, in a rural setting and I was paranoid about DS going to kindy but he is one of 3 children with a nut allergy. You are quite limited however compared to the UK with cakes, biscuits etc but fortunately DS prefers fruit and veg. We have also learned to bake together!!
I have also found helpful a tip from a friend who suggested that I rub any food which I am not sure about on DS's cheek to see if he comes out in hives. This is really good when everything has been taken out of the packets and people are telling you everything is OK but you want to make sure. (I do usually take food with me and DS never eats anybody elses without asking but it is so hard with birthday cake) Has certainly worked once. The person making the cake didn't use nuts but thought almond oil would be OK!!!!!
I also agree with robinw that it is best to have a nut free house if you can. DS came out in hives last time my step son was here who kissed him after eating pistachios. Only mild I know but I then spent the next hour hunting the house for pistachios shells, remnants etc as stepson is not the tidiest of eaters even at 11!!

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Something probably all of you know, but.. arachis = peanut . Stupid stupid me bought a bath oil for my son with arachis oil as the second ingredient; luckily I realised before I put him in it. I'm honestly not too terribly worried about peanut oil used for frying -- although I avoid it where possible (but that's just me! most people care more than I do ) but an oil used in a fancy bath oil might be cold pressed. At least that was my thinking. What kind of idiot am I? Anyway... I'm probably the only one who didn't know that and you all are just shaking your heads in wonder and dismay.

RobinW, I thought of that, too.

JJ worse than that my ds has excema and a nut allergy and our DOCTOR gave me a prescription for bath oil that contained arachis oil,doh!!

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robinw - thank you for your offer of an epi-pen and if I need to, I'll take you up on it (sparrowhawk's kindly thoughts notwithstanding). I too am worried about the flight (and not just nuts - small person, 24 hours, no sleep, no legroom, )

sibble - I'm trying to get the trainer pen and vid here before we go but if no luck will follow your advice, thank you. And top tips about the DIY skin test and checking for 'arachis' on the label. I'd also been wondering about how we'd cope in foreign languages and actually had a nightmare where I thought I'd successfully arranged a nut-free meal in a foreign restaurant but when it came it had EXTRA nuts in! That card sounds good!! So much info out there, which is great.

I'm now thinking that dd may also be dairy intolerant - she has always been noticeably more mucussy (is that a word?) after her bottles and has problem dry skin. Not sure if this is post-fact paranoia due to internet research! We'll wait for allergy testing before we do anything drastic though.

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I think the best advice my consultant gave me is 'if DS won't eat it, don't make him. He probably doesn't want it for a good reason'. You obviously have to take this in context and if he just won't eat his carrots, tough!!! but he didn't want eggs until he was 3 and still won't drink any milk. He gets calcium from yoghurt and other sources.
Flying can be interesting. cathay pacific asked us to change airline and offered a complete refund recently!! I declined as too much effort at short notice to get similar flights but..... They would not guarantee that the meal would be nut free so he had fruit platters all the way to the UK and back. They did allow me to take my own food on board which was just as well as teh platter was completely inappropriate. They also served peanuts with the drinks which I thought all airlines had stopped. Who are you travelling with when you come over?

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Robinw, good idea. I have never used an epipen. There wasnt a training pen available when I went for my training (useful eh?!) I had no idea about recoil.