Severe nut allergy

[madame]

My daughter is coming up to 4 and has been diagnosed with peanut allergy. We have been to see the GP and had allergy skin testing by a allergy speacialist in Cambridge.

We have the piriton and epipen and I have spoken with the nursery where she attends with regards her care.

My anxiety about the whole thing is what she can and can't have to eat......the specialist said not to start changing what she has already but not to introduce new foods that may contain nuts.

The whole label thing is a mind fieldcan anyone make it clearer to me. Also I need to find some good alternatives for cakes, biscuits, and desserts. Where do I start?

Any advice generally about this would be greatly appreciated. I am feeling quite upset and a little out of control about it at the moment

That is normal, I'm afraid but it will get better.

Right, have to be brief but:

Labels: by law, manufacturers must make clear if their products contain peanuts (amongst other things). Some do this just by listing peanuts in the ingredients, others go further and have an 'allergy advice' box that will highlight peanuts if they are in the product. So check the allergy advice box and if their isn't one read the ingredients list. You will need to keep doing this as formulations can change - it will soon become second nature.

As well as saying if a product contains peanuts many (most) manufacturers will say if the product may have traces of nuts in it (this could be peanuts and/or other nuts). The way they word this and what it actually means in terms of risk vary b/w products. Some slap 'may contain traces of nuts on everything' others are more specific about the risk - we find Tesco's labelling particularly helpful.

As to what you allow your dd to eat - you make up your own rules. I am strict with my ds - nothing that 'may contain traces' or 'made on equipment previously used to manufacture nut products' but if made in a nut free area of the factory that's OK. A friend of mine with nut allergy does eat most things that 'may contain traces of nut' except chocolate, cake and breakfast cereals as she has had reactions to these in the past.

The Anaphalaxis Campaign is a good source of support and info (for you and your dd), as is this forum. There are various support groups for parents of nut allergic kids on the web (most American but some UK specific) but to be honest they scared me so much in the early days (to the point of panic attacks) that I stopped visiting. Now coping with the allergy has become second nature and I no longer feel the need for them - it (the allergy) is always something I'm aware of and it does make some things more difficult (foreign travel for example) but the terror I initially felt is gone. And if you want to find out what work is being done to overcome the allergy search on here for Bluebumedfly's threads.

That was longer than I meant it to be. Off to pack now.

You can have Fabulous Bakin' Boys cakes, McVities Jaffa cakes and Jaffa cake rolls. Biscuits are easier than cakes, there are lots that are peanut free. Most crisps are ok.

Here are some websites that are useful

united biscuits

cadbury

Kelloggs website tells you which cereals 'may contain traces'

Nestle don't put their nut list online but you can get a paper copy but you need to request a new one every few months. atm tubes and boxes of smarties are ok. Nestle (and lots of others) don't differentiate between treenuts and peanuts.

Lots of cadbury has a 'may contain traces' warning on the packet but is ok for peanut allergy suffers. There website tells you what contains peanuts and what contains treenuts.

You still have to check labels every time you buy in case it has changed since last time.

It may be a good idea to start carrying something in your bag that you can give your dd in situations when other children are having sweets/cake which you are not sure about. If your dd's nursery allows sweets etc to be handed out for birthdays then provide them with a stash of nut free things that your dd can be given as an alternative.

You will soon get used to what she can and can't have. On the plus side, peanuts aren't in all that many things and people do take it very seriously, which is not always the case with other allergies such as dairy or egg which can be just as dangerous.

Thank you both very much for your time

Who did you see at Cambridge? Was it Addenbrookes Hospital? I only ask as SDD2 is on a trial at Addenbrookes to desensitise her from peanut allergy.

I second everything that has been said so far. You will very quickly get used to what she can and cannot have and she will also learn fast, kids are amazing.

Don't do what we did and let your DD refer to food as 'safe' as when she went out to parties she would ask adults if foods were 'safe' and they would not know what on earth she was talking about. We had to reteach her to say that she had a nut allergy and was the food free of nuts.

We always avoided ALL foods that 'may contain nuts' as SDD was so allergic, she also did not eat from Bakeries or Buffets when we did not know the origins of the food.

Always have a snack on hand to give her in a situation when she cannot have one from a friend or party. When she goes to a birthday party you might want to send her with a cake of her own to give the birthday child as a 'gift' and you know she will eat safely. DD used to make cakes with us ahead of a party so the 'gift' was a personal.

Please know that there is amazing medical research taking place and this terrible allergy may one day be controlled. If you want to know any more about our trial then just let me know, xx

Hi madame - I can still remember how terrible I felt at the beginning and my child with nut allergy is a teenager now. Although it will take time you will become used to dealing with this. I was advised to think of it like a road traffic accident - you train your child to avoid the risk but unlike RTAs you have an epipen back-up. An epipen trainer pen (I think free from the manufacturer) is very useful.

Some brands of jaffa cake are OK - Sainsburys own brand and McVities but not all supermarket brands. Most brands of bourbon biscuit are OK. Bakin Boys are great. Kit-kats have no nut warning. A bigger problem is likely to be ice-cream but some Magnums are OK and Vienetta. I think Walls Vanilla and Carte D'or Vanilla are ok but can't check right now. The website www.peanutallergyuk.co.uk has a good food forum.

It's worth reading about the Cambridge trials.

Hi Tatt - how goes it? Are you all well?

Hi BBF - teenagers are hard work, especially with GSCE soon! Apart from that we're fine - not even a trace reaction recently .

Good news (about the reaction situation not the GCSEs!) Good luck with that one!

Sainsbury's have an own brand ice cream without a nut warning.

Second wb's suggestion of joining the Anaphylaxis Campaign - they are a great support and you get sent warnings of foods changing their recipes to include allergens, cross contamination cases etc.

And if it makes you feel better, I've been allergic to nuts (not peanuts) all my life and I'm 33. It's not always easy, but you will cope.

hope it helps those new to it to see that in years to come the nut allergy will become sort of routine and other problems will occupy you more. You can go years without reactions if you are reasonably sensible.

It will get easier. I remember doing the first shop after my dd's diagnosis and it took three hours. I was so despondent. You soon learn what you can and cannot buy and adjust what you regularly buy. The customer service desks in supermarkets are usually quite helpful too and will phone the head office or the customer service number on the packet to find out if you can have it.

My dd was 4 too and I got her a mediband from mediband.com.au for when she was at parties etc and then she wore it all the time when she started school. To be honest, it reminded me as well as at first I forgot all the time. I gave her a biscuit in the car on the way home from the hospital appointment!

Tatt's right - I had a reaction last year but before that my last one was when I was 18 (more years ago than I care to remember...). And epipens are so easy to use. It really is a very manageable thing - don't blame you for worrying about DD but you will feel more in control soon.

Thank you all

Very good to know that there are people out there to give support and advice. In answer to your question BlueBumedFly we saw a allergy specailist called Andrew Clarke, he seemed very knowlegable and did say we could look to perhaps doing some work with her when she is 7 or 8.

I feel a little better as yesterday I did a whole load of research on the net and put together a little file all about it. savoycabbage you mentioned a mediband, I suggested this to my GP but he said she was a little young for one of those but do you think it's a good idea at any age?

Tonight I am more worried about her not sleeping....the easter bunny came early to our house and took her dummie away (which she has had since she was a baby to go to bed with) in exchange for a cinderella doll and egg! We had to put it in the dustbin just to make sure we didn't get weak in the night and relent!

We are with andrew too, he is wonderful. He is the doctor who has desensitized my sdd, it has changed our lives so much. The man deserves a medal!!!

That's really great to know, may I ask how old your daughter is? How does it all work?

She is my step daughter so it was a group decision to take her. She was 10 when we started, now 11. She had her threshold tested and was shown to only be able to tollerate one fortith of a peanut which equates to 0.5mg of peant protein. She was given this amount as peanut flour mixed into a yogurt. From her she went up a dose every 2 weeks until sept when she acheived the golden 800mg which is 5 peanuts. At her last challenge she tollerated 12 peanuts. She takes a daily dose of 5 peanuts and she has bloods in April to see if her allergy is abating or not. Either way we no longer have to worry about nut traces and we can eat in restaurants and parties without stress.

That's such great news for you all, I found him by chance and so glad I did. I did know he is doing work around this but I so nearly went down the London route.

He also is very nice and good with my daughter so that's a bonus.

Thank you for sharing this with me.

He is so lovely eh? We found him via an advert in the Anaphlaxis Campaign and the whole team have been encouraging and supportive. If you want to know how our next set of bloods go then email me at mellieandmin at aol dot com and I will keep you updated.

I am so sure this is the breakthrough we have all dreamed of. Our child is now safe and I know they will go on and on helping more children, hopefully including you dd. Good luck, in the meantime email atany time xx

hi madame- I do remember the awful feeling of horror when ds was first diagnosed at 18 mos.
I would echo all the good advice given here.

I did get a medi-alert bracelet for ds when he was 2.5 as it encouraged him to tell strangers about his allergy and I think allergic kids need to have confidence to talk openly about their allergy.
He still wears it today (same one and he's 6.5)!

We also saw Andrew at cambridge whe he was doing trials on egg allergic kids-his work is very inspiring and hopeful.

Lots of great advice on here (my ds has been nut & egg allergic since 18 months). I would just add the idea of a swap box. Have a box of lots of treats your dd can have and whenever, she can't have something other children are having, get her to 'swap' the item for something she can have. My ds has this at home and at nursery. Also, just be aware that some toiletries/make up contain nut products. Examples I have had to avoid are (some) bubble baths, massage oils and lip balms. Also be aware of hand soaps when out and about. My mum had a hand soap containing peanuts oil in it a couple of months back and didn't realise. Arachis hypogea is the latin name for peanut sometimes listed on these products.

I felt just like you madame, my dd was 4 when we found out she was allergic. she is now 6 and there's a chance she may be outgrowing her allergy.

My only (and relentless) advice is just read the label on everything, don't rely on certain brands being okay because they could change their manufacturing location/ process. Just check every packet/ box, your dd will learn to read them herself before too long.

Second the advice about bakeries/ buffets. we have always avoided them.

It will get easier with time

Thanks again for all the good advice

Where do I stand on giving her the things that she has always had in the past with no apparent problem. For example as a treat she likes sausage rolls from the local bakery. Do I stop that or allow her?

The consultant told me not to stop anything I have given her before but be mindful of new things.

ggirl can I ask where you got the medi alert band from please.

medicalert bracelet ds wears a normal stainless steel one as he has eczema

As for the sausage rolls ,you need to consider the risk of contamination in the bakers.If she's been having them safely it may be worth having a word with the baker and asking about where they get them from,how many nuts are in the vicinity.
Generally food from a baker is a no no as far as nut allergic people are concerned ,but only you can decide.