advice about peanut allergy

[imaginaryfriend]

Hi my dd (5) had an extreme allergic reaction to peanut butter in the sauce of a stew I made yesterday evening. Within 5 minutes of eating one forkful her lips swelled and her breathing became more and more noisy and laboured. She'd had a bit of a cough the day before and we thought she might be having an asthma attack at first (she has quite bad asthma) until we noticed her lips swell and her face redden. We called an ambulance and immediately at the hospital they said she was having anaphylactic reaction to something and gave her steroids, anti-histamines and an adrenaline jab. Within 15 mins of the jab she was breathing much better. She stayed in over night and has been discharged with an epipen, anti-histamines and a follow-up appointment with the allergy team.

I'm so shocked about the suddenness of it. And also that she should suddenly show up with a peanut allergy after having definitely come into contact with nuts in cakes / biscuits over her 5 years. She's never actually sat and eaten a bag of nuts as she doesn't like them but she must have encountered them. So why now?

And I'm left wondering if from now on I should avoid all nuts and all foods with traces of nuts (which she's been eating without a problem for years) ...

If anyone has help / advice / similar stories, please let me know?

hi, sorry to hear about your dds allergy. my dd is also 5 and had an anaphylactic reaction to a peanut last year. We avoid anything that even "may contain traces.."

Something that always causes problems for us is homemade cakes, biscuits etc, even if you know the ingredients are fine you don't know about cross-contamination.

I remember feeling very upset and worried about dd when first diagnosed. We have got used to it to some extent and have learnt to live with it.

You can get some great Epi holders www.kozyepi.com
This is a Canadian website, there may be similar in the UK

;

Thanks for the replies. I've just ordered her a wrist bracelet, they recommended that in the hospital.

naturopath, Evelina Children's Hospital was where dd was! It's a lovely hospital.

Today is my first day completely away from dd since it happened and I'm feeling very low. She went back to school on Wednesday but I was just down the road the whole time. Now I'm at work across London and I keep dreading hearing my mobile go off.

Tomorrow we've got a birthday party and I'm worried about that too.

It's all such a life change isn't it?

I don't know if anybody else has this but I feel like I'm in a bit of a post-traumatic state following dd's anaphylactic episode last weekend. I keep getting flashbacks of her at the most scary stage and i can't seem to stop thinking about it.

yes it does change your life but it doesn't have to be all bad. It does encourage you to make the most of life and none of us know what is coming tomorrow.

When you get flashbacks keep reminding yourself that you got her medical attention - you saved her life. And now you've got her epipens she will never be at so much risk again. Adrenaline is more effective when used in the early stage of the reaction. I've only had to use one once but it worked really quickly, we didn't even go to hospital. So if anything does go wrong you will be able to deal with it. And yes I did find it worse afterwards because at the time you have to focus on dealing with the reaction, you can only panic afterwards .

I have tried to train people never to phone me at lunchtime because for days after a reaction I am twitchy at mealtimes. It will gradually wear off. You could have a second mobile that is only given to people caring for your child, although that might cause confusion.

Tatt - have you experienced reactions then where you haven't had to use the epipen or go to hospital? Can there be minor reactions? Or are the all big scary ones?

nut reactions are unpredictable, according to the allergy consultant we saw. You can have a really nasty one then have a mild one later. We've had several minor ones and two more serious. Don't know if they were all to nut or to other allergens. The first one was severe and definitely nut but all the others have been to food that didn't have nut warnings on them, not even a "may contain".

We used to give antihistamine and watch carefully if it was just a minor reaction (tickle in throat). That's scary because you don't know how its going to go. However the last time antihistamine obviously wasn't working so I used an epipen. Now I'd use the epipen sooner. If your child encounters cross contamination the reaction may be mild - but you can't count on it. The important thing is to always have the epipen handy, even if you don't expect to need it. Also if she does start to have a reaction don't let her move around as exercise makes it worse.

Hope the party goes smoothly. Your worries are entirely normal at this stage but I promise it does get easier.

Thanks tatt.

Well the thing is, we're assuming that it must be the peanut butter as the reaction was so extreme. But it could equally have been the celery in the stew or sweet potato (neither of which she's eaten in the past even though I have cooked with them). But it could have been anything. I was remembering tonight that when I last had a box of chocolates she tried a nut brulee type of one which she ate and liked and was totally fine. It was hazelnut I think.

I'll definitely feel a bit more in control when we get the full range of allergy tests done.

When she was a baby she was allergic to dairy, eggs, fish and nuts. We went back to have the tests repeated every 6 months and by 18 months old she was given the all-clear for dairy after a 'food challenge' test but I'll be blowed if I can remember them repeating the fish, eggs and nuts side of things. I wish I'd paid more attention to it all. The dairy allergy seemed to be so dominating at the time that the other things didn't seem so important.

I think I didn't go to any follow-up appointments after it was proved ok for her to drink cow's milk.

[Rubbish mummy moment].

you can get peanut allergy without having tree nut allergy. So she may be OK with hazelnut. However quite a few of those with peaanut allergy develop tree nut allergy later on. Also nuts are often stored together so you'll probably be advised to avoid all nuts.

Although it could be celery allergy (common in france, apparently) peanut is the most likely cause.

In case they forget to tell you no antihistamine for a couple of days before the tests.

Yes tatt, they did tell us that. She's on 2 weeks constant antihistamine for now then she has the tests 2 weeks after that. I can't wait to get them done.

We had a friend over for dinner tonight and I made something so ridiculously nut-free it was almost mad. The party was fine yesterday but I'm glad I stayed as there were a few things there that I'm sure she'd have eaten if I hadn't been there.

why on earth is she on constant antihistamine? It can mask a reaction in the early stages so isn't recommended.

They put her on 3 doses of antihistamine a day for 2 weeks. I can't tell you why I just went with their suggestion as I"m a novice to all this.

some people need constant antihistamine for inhaled allergies/ if eczema is very bad. I try to avoid giving mine routine antihistamine.

When you see the consultant don't tell them she's been on constant AH - just ask if it would be helpful. When you're told no you can tell them to train their hospital staff/ your gp better.

Hope anyone else reading this will comment on what their doctors said.

BTW what antihistamine have you been given? I was prescribed a modern one but when I saw a consultant we got piriton because it acts quicker.

We were given piriton because of fast action. But I asked for her to have a Benylin type one for the daytime as piriton wipes her out and she wouldn't last through school. So she had the Benylin type one in the morning, piriton after school and before bed. I'm cutting it out this week.

She also has a Seretide inhaler (long lasting broncho-dilator and fairly strong steroid) as her asthma is quite severe. She takes that 2 puffs twice a day.

Sorry, can't remember the name of the Benylin one, it's in her room on the shelf.

Will post more tomorrow.

You've been so helpful and so friendly tatt, I really appreciate it.

Jeez I must be tired, I mean Benadryl of course not Benylin.

To bed!

Oh bugger IF

Its a shock when it transpires in such a manner.

I think everyone else has covered it, but just wanted to say that it does eventually become much easier, and second nature to check the right bit of labels on food etc, question food and treats at school etc.

The biggest obstacle we ever had was with family. For some reason, family always think they know better

Hi VVV

Yes, we've already had some 'helpful' comments from MIL ... hmmmmm ..

My dd is exactly the same. Developed a severe allergic reaction after having a bite of a sneakers bar. She had allergy tests and is only allergic to peanuts (severe, though so she also has epipens). I am quite relaxed about it, as schools have no nuts policies and she is absolutely fine with foods that contain "may have traces of nuts" on their labels. The school has two epipens and I she carries her epipens with her if she is at a holiday club. Imaginaryfriend I wouldn't worry to much as your dd has been having foods that contain traces of nuts without any problem. I would suggest you ask for allergy tests, so you know what she is allergic to. Id definitely put my mind at rest as I only have to worry about peanuts.

Imaginaryfriend, sorry hadn't read the whole post and din't realise you are having allergy tests. Good luck, they will definitely help as you will know what you need to avoid

Hi Imaginaryfriend. You are getting some brilliant advice here. Just adding my bit, because my daughter is the same age as yours so probably has a similar social life! She is allergic to bee stings (which can also cause anaphylaxis). DH is severely allergic to nuts and we haven't risked giving her any yet.

Birthday parties are the hardest thing, I reckon. There are some mums who I trust to shop carefully for nut-free food, but there are others who can't really get their heads around it. I have a good chat with the mum when I accept the invitation and suss out whether I think she has grasped the need to read labels ultra-carefully. Also, whether they would cope with using the Epipens if they had to. If I'm not entirely confident, I stay at the party to keep an eye on things. DD1 is not always too impressed about this!

Even if I'm not staying, I ask the mum when I arrive whether I can have a quick look at the food and check ingredients if there are boxes around. I have been known to fish packets out of the bin to read the label. You learn to be quite assertive in these situations!

You also need to get your DD trained not to eat anything unless she has checked with you (or responsible adult) if it's OK. So if one of her little friends offers her a sweet at the school gate, you get a chance to check what it is. We also keep a stash of "safe" treats at home, so if I have to say no to something she is offered, she gets a treat in compensation later.

The other thing to think about is whether you have particular friends who babysit for you, or where your daughter likes to go and play without you. You probably don't feel like leaving her at all at the moment, but the time will come when you need to. You need to think about adults who you would trust to use the Epipen if they needed to, and take some time to talk them through what they have to do. I have also written out simple instructions for babysitters that are kept in the bag with DD1's Epipen, so they have something to refer to. In our case, it's more difficult, because she could get stung by a bee at any time - the risk is around even when they aren't feeding her .

Your school does sound clued up and I would agree that school dinners from an allergy-aware kitchen are better than packed lunches where there might be a culture of kids sharing food.

Sorry if I'm repeating what others have said - I tried to read them all properly, but I'm supposed to be working Try not to get overwhelmed. It is scary, but it is managable and the whole thing becomes second-nature after a while.

Thank you soiph. The allergy specialist in the hospital said that things she's been having for years, even if they say 'may contain a trace of nuts' should still be ok. But not to eat out, get takeaway food or try anything new at all until her allergy tests. I'm thinking my dd may be like yours, predominantly allergic to peanuts.

Thanks for your advice Smith. I can't get too much advice at the moment! If it's any reassurance to you, I work with a woman who was stung by a bee for the first time aged 16 and went into anaphylactic shock. She's 35 now and carries adrenaline with her but she's never been stung since. I agree with you, it's a horrible thought that it could happen at any point.

the problem with having foods that say "may contain nuts" is that a lot of the time they don't - then you find a chunk of nut in one. The risk is higher if the company produce products with and without nuts on the same production line but the only way to find that out is to ask them about every product. A whole nut has been found in cadburys milk chocolate. The fact that you've eaten "may contain" products safely may just be because those products didn't have any nut traces. Then you get one from a different part of the production line and its a different story.

Nut allergy thresholds (the amount a person can eat before a reaction) vary considerably. Some people diagnosed with nut allergy would be able to eat a single nut, some can't have 1/1000 of a nut. Unless they do a food challenge (which they won't if they get a positive test) you won't know the threshold.

You have to decide for yourself what level of risk you want to tolerate. When your child is older they can decide themselves. We don't have anything with a may contain warning.

Tatt, we're avoiding too until we've had the full allergy tests. I suspect dd will have quite a high reaction because she only had one tiny forkful of something with 1 tablespoon of peanut butter to thicken the sauce. It was pretty dilute given that it was a whole huge wok full of stew with lots of sauce.

I found some of the big supermarkets to be quite helpful. We were referred to a dietician after my DD had a bad reaction to egg. They provided us with a list of phone numbers for the big supermarkets who provide 'free from' lists.

Obviously, we've got the free-from egg lists, but they must do nut ones?

Can post if anyone's interested.

Yes please katsma!

For anyone wanting to enquire about 'free-from' product lists, these are the customer services phone numbers that the nhs allergy consultant provided us with. Bear in mind that this was 6 months ago.

Asda, M&S and Sainsburys were particularly good (ours are the egg free lists). Iceland and Tesco had discontinued theirs, but might still be worth enquiring about nut-free.

Asda 0500 100055
Boots 08450 708090
Co-op 0800 068 6727
Iceland 01244 842842
M&S 0845 302 1234
Morrisons 01274 356000
Sainsbury 0800 636262
Somerfield 0117 935 6669
Tesco 0800 505555
Waitrose 0800 188884

HTH