peanut allergy - how do you cope with the fear?

[robinw]

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robinw,
my sister's youngest daughter has a severe nut allergy. Since she could talk, wherever she goes she will ask "does this have nuts in it". She is now 10 years old. Absolutely everybody who comes in contact with her is warned about her allergy and the fact that food packets need to be read to see if there are traces of nuts.

The last bad reaction was when she had a cake at school (made by dinner ladies who are sure no nut ingrdients are used). It was actually chocolate type topping on it and the jar did not mention nuts. Elaine is so aware of her own condition that she told the teachers she knew she had had something with nuts in it because she was aware of the reaction starting. My sister was called and she went to the school ( she was just about to go to work) and administered her epipen. She then got a quick check over at hospital.

What I am trying to say is that you must make everyone aware of your dd's condition and more importantly you must ensure she is very aware of foods to avoid and tells anyone new she comes into contact with. There might be an occasion where these foods are accidentally eaten - but that is why she has an epipen. There are just wonderful devices

What about writing a 'help sheet' on the computer, small enough to carry a few copies in your handbag, that you could hand out to anyone likely to be giving your dd food? You could point out the main problems etc. Maybe actually having somethng written down would emphasise the point and make people more vigilant.

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robinw, would it help to tell the birthday party hosts in graphic detail about the severity of your daughter's reaction if she has nuts? No friend would want to wish that on your daughter, especially in the middle of a birthday party they are orgainsing.

Hope she has a good time.

Robinw, it's your and your daughter's (if she's old enough) responsibility to make sure that she doesn't get nuts. It's not fair to show up somewhere, say, "Hey, my daughter's really allergic to nuts" and expect them to know every ingredient of every dish and have read every packet of every piece of candy they have. You need to do that-- ie, ask about everything and realize that if you don't know the ingredients, it shouldn't get eaten. There are a few ways to deal with birthday parties: help out yourself, bring food or simply don't go. Truthfully, they're not going to be so much fun anymore as your daughter won't be able to eat all of the food and rarely the birthday cake, especially if it's store bought. It's simply unrealistic to expect people to know how to be vigilant enough if they are not in the same situation.

It'll get better though. It takes a while and some getting used to, but there's a lot of good food she can eat. Plus with reading every food label, you're going to find yourself buying more and more organic food.

As I mentioned before, my niece has a nut allergy but it is not necessarily peanuts - which in fact are not a true member of the nut family. Her doctor says it is not worth the risk of testing her with peanuts but just avoid them. Her initial reaction was triggered by almonds.
Perhaps it is surprising but many people do not know that marzipan contains almond paste. It is not until you have a child with nut allergy that you start to read every packet.

This condition can be managed with children still getting to go to parties etc. by letting everyone know about the allergy and by providing food your child can eat safely. My niece missed out on things at school such as tasting foods from other countries - she had her favourite biscuits instead and readily accepts it. Having had to have her Epipen administered a few times, she would do anything at all to avoid it. Unfortunately she totally dreads that happening so it is not a hardship for her to miss out on foods containing nuts.
My sister bakes a Christmas cake specially for her with no nuts, as well as a traditional one for the rest of the family.
Robinw,
One thing you must make sure is that there is someone at the party capable of administering the Epipen if it is required, if you cannot stay.

More importantly, there must be identified members of staff at her school that know how to administer the pen. Before my niece started school, willing members of staff were instructed on the use of the Epipen. Elaine has only needed it once so far and my sister was available. Once the teachers saw how easy it was in action they felt reassured. As you can imagine, there had been concern expressed prior to her starting school about whose responsibility it was to administer the Epipen.
The school was worried about being sued - my sister made it clear she would take action against the school if it failed to save her daughter in the event of a severe reaction!!

RobinW,

My daughter similarly has life threatening allergies, however, not to nuts but eggs and milk, so as you can imagine there is never anything which she can safely eat at parties. The only way I have found to safely deal with it (apart from not letting her go at all) is to check with the Mum beforehand what sort of food there is going to be and try, as far as possible, to provide something along similar lines. She happily goes along with her box of food and, so long as she has a party plate, happily puts her own food on it and eats with everyone else. I also ask the hosts not to provide egg mayonaise sandwiches (which seem to ooze out everywhere), explaining why and they have always obliged.

With regards party bags I simply ask that no loose sweets or cake is put in. Any unsuitable sweets which she is unable to eat are simply swapped at home for a suitable alternative from her "safe sweets" box.

I agree with Mears that your daughter needs to be very aware of the foods she cannot have and develop the necessary confidence to question adults who may not be wholly familiar with her condition and most importantly to say NO if there is any shadow of a doubt. I was "lucky" (if you can call it that) that my daughter was diagnosed at a very young age so has grown up with her condition and developed the necessary strategies to deal with it. Also, she has never known anything different so has not had to struggle through a deep learning curve and radically change her eating habits.

I personally would never leave an epipen at a party unless I was confident that there was someone there who fully understood the allergy and could administer it if necessary (which is very rare). I always leave with the host home and mobile contact nos and piriton syrup with full instructions regarding dosage and make sure that I am no more than 5 minutes away in case an emergency arises.

With regards the "fear", I don't think this ever really leaves you - indeed, for the first dozen occassions I plucked up the courage to let my daughter go to a party on her own I sat around the corner so I could get there in seconds should a situation arise. Sometimes, even if its just on a hunch of a feeling, I still stay - you have to go with your gut instincts.

I hope the party went well today - let us know how you got on!

Coral

The anaphylaxis campaign has a good website which has some useful information regarding nut allergies - www.anaphylaxis.org.uk If you take out a membership they also produce a very informative quarterly newsletter dealing with allergy issues (again with a strong emphasis on nut allergies) and will mailshot you regarding relevant product recalls.

I have to say that in my case, I never leave my son without an epipen. There have been times when an extra 5 minute wait would have been a very bad thing. Some reactions happen so quickly and without warning.

Epipens work marvelously and are seriously easy to use. If you're worried about someone being a bit nervous about it, there are epipen trainers available (probably from the Anaphylaxis Campaign) so that it's possible to show someone exactly how to use it.

Remember, you have it because you need to do something immediately in the case of a reaction. If it's given accidentally, no harm done. And, again, they do stop reactions quickly and usually completely (or at least for long enough to get you to a hospital).

This is probably not making you less paranoid.. sorry! It does get better. My best suggestion for feeling a little more calm is to find someone older who has a serious allergy and talk to them. It helped me to talk to my friend's dad who has a nut allergy, is alive and living a normal life.

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robinw - the epipen should go wherever your child goes. My niece only has one and it is replaced when used or expired because they are very expensive. The risk is your child having an anaphylactic reaction with no immediately available treatment. I don't quite understand where your GP is coming from.

Robinw - on reading your most recent posting I feel the same as mears. I would contact the Anaphylaxis charity for advice, then go back to GP armed with evidence, and if no joy seek a second opinion.

I used to believe that GPs always knew what they were talking about - I spent over five years (!!) suffering from the after-effects of rheumatic fever, then when my GP retired I was called in to meet his replacement. She was horrified that I had been left to subsist on anti-inflammatories, promptly arranged a full check-up at the hospital rheumatology dept to find that I have permanent damage to my knee joints and a heart murmur!

So I would say don't hesitate to question your GP's advice, it sounds as though he's not really familiar enough with the condition to give the best care for your daughter. Let us know how you get on.

My daughter has a nut allergy, and has had from the age of 10, we have been to hospital on a blue light three times. She had eaten nuts all her life, until wham! one night she just slumped across the table and couldn't breathe. we didn't know it was nuts. The GP came out to the house as I couldn't stabilise her with a nebuliser - (we thought it was a bad asthma attack) The GP took one look at her anad dialled 999.

My daughters friends are her best friends, they tell their parents and make them check everything. I must say I don't worry about her anymore, she is sensible and checks everything, though I must admit I am a teeny bit worried as she is going to Peru for a month on the World Challenge this summer.

She did have an IEG test done when she had glandular fever and it was 3630 opposed to a normal count of about 40. So they gave decided, yes she is allergic, we won't test any further!
It was decided it was too risky to test her for nuts so was given an epipen. We have about 4 or 5, one at school, one in the car, one on her person, etc. I feel really guilty as they cost so much ( about £35 a time)but keep having to be replaced although unused as they have reached their use by date.

Fortunately we have never had to use one yet.

How frustrating and misguided your GP must be! A couple of weeks ago, I came across an article that might help you persuade your doctor that Epipens are safe to have around:Accidental Injection of Epinephrine From an Autoinjector (This requires registration, so if you'd rather not register, let me know and I can email you the article.) If you ever use it, they'll replace it for you at the hospital, so don't worry about that.

If you can find someone with old epipens, ask to have one to see how it works and what it feels like. Try it out on an orange. If you're around Central or North London, I'll let you have mine.

My four year old son knows to question everything he puts in his mouth and not eat anything that hasn't been approved by an appropriate adult. I don't rely on that, ie someone checks everything he eats, but it does help, especially when a sweet little boy at nursery tries to share his candy bar and stick a piece in my son's mouth. I really do think you need to teach your daughter not to eat anything that hasn't been checked by someone who knows the ropes.. although I'm sure your doing that already. It's my paranoia that won't let me leave him anywhere without figuring out what he can and cannot eat for myself.

Although my ds (4.5years) doesn't have any allergies I have drummed into him that he must always ask the mummies or adults around at playgroup before he offers another child anything to eat at all.

He knows that some children are not allowed nuts or sugar and are allergic and that it's very important that he always checks before offering any of his friends anything. So far he always seems to do this.
Robinw, the fear must be awful, agree that a written note that you carry round with you and hand to other parents at parties etc explaining the seriousness might help. Best of luck with persuading your GP about the Epipens.

www, re telling my sons not to give food to other young children before checking with their parents. I've never thought of doing this, but what a good idea.

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Robinw, re-reading this topic I'm still outraged on your behalf that your GP won't supply epipens for your child at school.

My friend who has a nut allergic ds has 2 at school, one in her bag at all times and one at home.

Could you go back (maybe with DH for moral support?) and insist that he supplies them for school? If he's now agreed that she should have them, then surely logic dictates that she should have enough of them? And she is, after all, at school very often! If it's a budgetary concern then this is unacceptable IMO. What price your child's life? Ooooh, I wish I could come with you and argue with him, since this sounds completely unreasonable to me.

Robinw, are you going to be at the meet-up on Saturday? If so, I'll drop by and give you a couple of my son's Epipens- they're Epi Jr, so half the regular dosage. Just let me know, so I can refill his prescription (it's just a phone call for me).

WWW, on behalf of all mothers of kids with allergies everywhere, I thank you. Actually, it's not so much the kids I worry about they're just doing a well taught job sharing it's the mothers who insist my son has a sweet, because it's small and "won't hurt him". So, you have more than one reason to be thanked, as I'm sure you don't push sweets on other kids yourself. Little old ladies tend to be the worst for some reason.

Would a medicalert bracelet help here?my son has one with a trendy sports-watch type strap and he's very proud of it! Helps me feel better when he's at playgroup etc. too.

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How/when will you find out? Is she having bloods etc or sjkin test? I believe that skin test are vv unreliable...lots of chance of false negatives.. My boys had to have biopsies but thats abit drastic if she's otherwise well. Good luck.