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 - hiya, glad kinnerton info was useful. Just want to clarify that I'm not suggesting you let your daughter tuck in to any "may contain nut" labelled product - they probably don't contain any traces but you can't be too careful!

suzyj,my ds 13 mos may have an allergy to nuts and we are also awaiting an appointment with a consultant.He breaks out in hives if he is touched by someone who has traces of nuts on their hands.He has never been fed nuts of any kind but has and does have bread from tha witrose counter that has the "may contain nut traces" on it.
I do dread the prospect of facing up to living with this allergy.it sounds so scary.I know the local schools are really well clued up on it and all the staff are trained to use the epipen etc.There are a few highly allergic kids in the town.
My ds is also allergic to eggs but I'm hoping he'll outgrow this as my dd did.
I have no useful info for you but do sypathize,your dd's experience was horrendous.Will also be keeping an eye out for any threads that give info.

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Suzy,

What a horrid thing to happen - my ds had a similar reaction to his first contact with egg - I used to wake and check him every hour at night for a few days 'just in case' - totally pointless. We went private to get a fast consultant appointment - we couldn't get the epipens without the appointment and the NHS wait was going to be months - you might want to follow up on just how 'fast' fast is really going to be.

I got my epipen trainer from the people who manuafacture the epipen - it cost a couple of quid, but came very quickly - so look for their phone numbers on the ones you have been given.

Also pretty certain your nursery will have to get training for their staff from a medically trained person - I know our playgroup & school insurance policies explicitaly state the training must not come from the parent.

I had a letter today from the hospital saying that the appt will be in no more than 14 weeks,and the would contact us sooner to the date .I thought we would be okay ie.safe to carry on without an epipen as we've only ever had a reaction of hives,which go away on their own eventually.About half an hour later.I wonder how much a private appt would be.Feel a bit more worried now.

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Thanks robinw for the reassurance.I think I'll phone the hospital and enquire about a private appt.Our nearest hospital is half an hour away.I will start carrying piriton around today,can't believe I don't already !will definately need to start drumming it into my dh's head that this could be serious as I found two packets of cashews in a cupboard low enough for ds to get into to.My dh came home with them last night and he seems to think it's oaky to have them in the house as long as we are careful about washing our hands and mouth after eating.Will have discussion with him tonight I think .Do yoiu think my ds would be susceptible to an anaphlactic reaction if he ate nuts by accident,judging by his skin reaction when touched be them?I know that's difficult to answer but you do seem very knowledgable on the subject.

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Hi SuziJ, bit of a late reply from me - a shit week. Anyway, my ds, 3, has a severe allergy to nuts, cashews are the worst and he has had a reaction similar to your daughter's. It was terryfying, more so because we were abroad and couldnt communicate properly. He was ok after the adrenalin but what a dreadful time it was.

We manage ok now but I had exactly the same fears as you. I must echo the excellent advice posted so far - if you can make your house nut-free, that's great. We have to do without peanut buuter and chinese takeaways but it's a small price to pay. Ds started pre-school last month and I was so scared to let him go so I spent ages at the school making sure they knew what to do. Our hospital will send a trainer into a school on request to train staff, find out if your hospital does the same. That way you can be sure all members of staff have up-to-date training. Also so my son doesnt miss out on any treats., I took some Kinnerton chocolate into the school (because on birthdays, children often bring something in such as cake or sweets and the school may be unsure about any nut content). Lastly, keep being vigilant, nuts can crop up in unexpected places. I gave ds pasta with a tomato sauce out of a jar. He had a severe reastion and a night in hospital. When I checked the lable I found cashew nuts had been used in an italian style tomato sauce, I never would have expected to find cashews in that type of food so now I am more vigilant.

Good luck.

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robinw ,ds reacts to peanuts/cashews so far.Went to a toddler group today and had to fill out a form regarding allergies etc.the woman running it was brilliant and reassured me that if ds went there for playgroup they are all trained to use epipens but may need refresher training.Was that what you were meaning regarding your dd's school.

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my nephew, now 9 is allergic to peanuts and other kinds of nuts. This was discovered in the same way when his mum gave him some peanut butter on toast when he was 10 months old. He had exactly the same type of reaction as your dd. His parents have epipens but have never had to use them. From a VERY young age when offered a food he had not had before he has always asked if it has nuts in. He has been allergy-tested every year since then and each year has had an increasingy less severe reaction such that when he was last tested he hardly reacted at all. This is fairly common apparently - that children can grow out of these allergies. So you really shouldn't see it as a life sentence.

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robinw, thanks for your comments. I didn't know that was happening. He hasn't had the food test yet, but his parents are still assuming he has the allergies to be on the safe side and are still keeping him away from nuts.

podmog - hi there! Yes, I did receive the info pack and I want to thank you so much! It's great and my immediate family are all going to get one, as well as nursery. I'm also going to chase the consultant for a fast appointment, as we are going on a 6 month work placement to NZ in about 4 weeks - am I likely to get one, d'you think?? And I'll find out re epipen trainers and medicalert bracelets.

We're both feeling a little calmer about it all right now, but this changes day by day. As my research progresses, the information I'm finding shows me that some of my fears are groundless or trivial and then, in the next moment, it opens up huge other areas to worry about. Bit of a roller-coaster! Having you lovely people online who have gone through all this (or are going through it right now - polly28, snowbell, my sympathies!) is a great great help.

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