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

My dd has had a reaction to a sausage roll. She is allergic to peanuts though, not tree nuts. Somebody gave it to her at a picnic and she reacted to it straight away. The problem is that you never know. You could give her something and she would be fine and the next time she could react because they have baked something with almonds in or whatever and there has been cross-contamination.

I am not trying to scare the be-jeebers out of you! It's just that you only think about these things as you go along.

When my dd got her diagnosis at 4 years old, I decided to keep giving her all of the things that she had been having before as she had been fine with them. But after a few weeks I stopped and she now has nothing with traces of peanuts in. This was because the research at the time (about a year ago) was that every exposure to peanuts was a risk. You are more likely to grow out of your allergy if you are not exposed. I can't remember the name of the study or the stastics but I will try and look it up later. You never know how bad the reaction will be each time.

One of the worst parts about it for me now, is the constant decision making. Can she have this or that? What can she have at parties? Who will you tell and at what point? Will people not ask her for tea as they are scared? Can she eat a muffin she made at school?

I would steer clear of things that you can't read the lable on (like the sausage roll at the Bakery). Like Hellish says, just because your dd has had something before, it doesn't mean that the ingredients will stay exactly the same. You really do need to check everything and this does just become second nature after a while. My ds is 4 now and his allergies are just a way of life for us. It isn't a hassle but just the way we need to live to keep him safe. The main thing is to be very assertive/pro-active with others. E.g. at Nursery, we have almost weekly chats (away from ds so he doesn't have to listen to this) about the food he can have and I often suggest/provide alternatives. I insist that his food is kept as similar as possible to the others food and the replacement is not something totally different. It does get easier too. I cried for 4 days non-stop when my ds was diagnosed (after having an anaphylactic shock aftyer eating peanut butter). But now it doesn't depress me at all and like I said is just a way of life. Good luck to you.

Madame, no advice but my dd ( age 6 ) has also been diagnosed with peanut allergy only this morning so just wanted you to know that you are definitely not alone.

I'm also gutted and have been " catastrophising" over the last few weeks about all sorts of unlikely things ( eg fast forwarding 15 years when she's backpacking in Thailand/ eating a takeaway at uni etc etc). I feel physically sick at the thought of something happening when I'm not with her and can't do anything.

Loads of good advice on here and I am feeling a bit positive again so thanks for the thread. I'm seeing the dietician next week but off to the supermarket now for the weekly shop.... may be some time...

Thanks Keresley, you sound very sensible about it and grounded. I know it will be come a way of life, just got to get there.

Stramash, sorry to hear you are going through a similar thing....just drop me a line anytime.

have just got back from taking my teens to drive Ferraris. My nut allergic child did a Duke of Edinburgh expedition last year with no problem. When I went to an AC meet-up one of the teens was just back from somewhere exotic like the amazon rain forest (I forget exactly where but they were certainly well away from medical care and mentioned the prevalence of nuts in local cuisine). Nut allergic children can live near normal lives, it just takes more planning. Socially it is a drawback, unfortunately, and uni still scares me silly so I try not to think about it too much!

We are very careful about sausages after a few tickly reactions but this may be lentils not peanut. We do eat sausages from the local butcher - local shops can be good if you make friends with the people in them. I would not risk a supermarket bakery.

When it comes to bracelets we have opted not to go for medic alert as it is expensive. We have an engraved bracelet that says nut allergy. I forget where we got it but its listed somewhere on www.peanutallergyuk.co.uk with various other options. There is even a photo of someone's tattoo .

hey there - my daughter has had a severe allergy since 6 months (first time she nibbled on a piece of bread she went unconscious...) so completely understand the whole food anxiety thing.

Anaphylaxis Campaign were a bit of a lifeline for me for a while as we weren't so lucky with the medical care we got (no appointment for 3 months and I didn't know what food I could give her as I was just weaning her...etc,etc). They also do workshops for parents of severely allergic children (free I think) which are really good.

Just take your time over shopping - read all labels, even if you've had something before. Recepies do change sometimes. DD had a bad attack once because an ice-cream that we had had in France with Almonds contained Hazelnuts in Switzerland! (same Brand)

Kinnerton do chocolate products from a guaranteed nut-free environment, so good for extra comfort.

My daughter's allergic to nuts and eggs, so when we eat out, I bring her food, unless they have something really plain (baked potato or plain rice etc.) on the menue. Egg can be in so many things, even stock cubes etc, so any sauce or ready-made ingredient is not really safe unless checked... It can be a bit awkward sometimes, but if you explain upfront, people in restaurants are usually very good.

Over time, it's just become part of life and much, much easier...

Schlumpf I agree, over time it does become easier and also i find trying to help others and swapping ideas really helps empower you to know that you really can deal with it.

I have just joined this site on the recommendation of another mother and reading these posts in particular are so encouraging to know mainly you are not alone. Our 4 year old son had a severe reaction to a peanut 10 days ago - face swelling, choking eyes closing, hives etc - just awful. We have since been given Epi pens and he has to take anti histamine every day. We went to see the pediatric consultant this evening who has now asked us to take him off the anti-histamine over the next 3 weeks in order to do blood tests. Whilst I know this is the right course of action, it fills me with terror as I believe the medicine is de-sensitising him at the moment, so I will be a nervous wreck until the tests have taken place. Has anyone else experienced this?

Another question, my GP said that the Epi pens were very distressing for the child as it speeds up the heart rate and is like a horror movie for them (!). What have been your experiences of administering it and the after effects?

The whole thing just terrifies me and I keep being told that the next reaction will be worse. Naturally reading food labels of everything that enters the house which I will continue to do religously. I will also look up Andrew Clarke as he appears to be a hero on this stuff.

In addition to the above questions, any other advice (other than all the fabulous stuff here already) would be very much appreciated - Thanks

Chasbelle - sorry that you have had to join us although of course you are most welcome . Once the blood tests are done you are likely to be in a much better position and have more knowledge of the extent of your DS's nut allergy. I am guessing they will test for all nuts and not just peanuts?

You are a million times better off having an EpiPen on hand than not. If you ever need to administer it you will know it is the right thing to do and you will just snap into action. In the meantime try to get hold of some out of date pens or use your trainer pen (if they gave you one?) on an orange, it is the best practice. I would not share this with DS at the moment, he is far too young to see the needle etc IMO without becoming scared. If he needs it he will not know too much about it.

The GP was being very honest with you, however the fact that he mentioned the words 'horror movie' is inappropriate and stressing you out to a point you do not need to be at this stage. What was the point? To try to get you to understand that you only use the pen for anaphylactic attack? I am sure you are an intelligent adult and could have gotten that without such drastic measures.

However, I must stress that EpiPens are life savers and obviously the second he started to have a reaction you would call 999, the wonderful people on the other end of the phone are well trained and would be able to talk you through everything whilst you waited for the ambulance to arrive. Can you ring your local ambulance station and register your house as being one with an anaphylactic child? We were able to do that in Berkshire and if our number comes up it flags up the allergy.

The next allergy maybe worse, alternatively it may be just the same. Has he had peanuts before? Could he have had any previous lesser reactions that you put down to something else?

First and foremost, there are loads of people here who can help you. A whole load of wonderful MNers know so much about IgE, much more than I do and they can give you really good advice.

From me, try to chill. You will cope and you will do it wonderfully. Check all labels, do not allow any nuts into the house, sod what your family/friends will try to tell you. Please also be careful of 'hidden' nuts like shear butter in body cream and almond oil in shampoo etc. You will find a set of foods that you can buy and he will be safe. My top points for a child of this age:

• Teach DS to tell people he has a nut allergy and be able to ask if foods are free of 'all nuts'- be careful not to scare him though!
• Always carry a snack/treat in your bag so that he is not left out
• Get a really good plan of attack written down and circulated at school so that the teachers/carer now exactly what to do and who to call
• Get friends' Mum's involved, it is amazing how people rally round and make sure their kids have allergen-free lunch boxes so that they can safely sit together at lunchtime
• Make cakes for birthday parties that he is invited to so he can take them as gifts and enjoy cakes that you know are safe
• Make sure your parents/key carers are well trained on what foods to buy/avoid - perhaps type up a list and circulate, I know the schools very much appreciate a Mum who can tell them reliably which sweets are 'safe'
• Come here and ask if you are scared/upset etc. someone is always around
• Take list of questions written down to the hospital on the day of the tests. If you are not sure of what the Dr is telling you, ask him to write it on a pad so you can later check online, with your GP or one of us.

So many I cannot think of right now but will keep in touch if you want me to? Simple things like normal Jammie Dodgers are OK but the mini ones are not, Dollmeo pasta pizza sauce has a nut warning (God knows how), Tescos have nut warnings on everything (gits). It will however become second nature.

Andrew Clark is amazing. Are you near Addenbrookes? He does not desensitize until 8 at the earliest I think but at least it is on the horizon now (my SDD is in his programme and we love him).

So much to talk about but I have already written too much most likely.

If you want to talk off line let me know, otherwise perhaps start a thread and we can get the really knowledgable ladies here to chat to you.

My heart goes out to you but it will be OK, I promise. You are a Mum, it is part of your make-up to cope and you will be strong.

Also try the Anaphylaxis Campaign, they are great. xxx

It is true your child does need to be off the antihistamines to get a true blood/skin test reaction, though I was told 1 week not 3? Antihistamines do not desensitise against the allergen, they just treat the symptoms.
Lay off the anti histamine but of course if a reaction occurs use it and just change the appointment.
My dd has Epipen and luckily has not had to use it yet so I can't tell you how it felt for her, but her consultant said "The only danger of Epipen is not using it!" He basically said , if in any doubt, don't delay, just use it. Surely better to have racing heart for a short time than to have a child collapse because they can't breath!!!
I found a website, alwaysreadthelabel. info which was very useful.

chasbelle generally antihistamines are not recommended because they could mask a reaction in the early stages. Your child will be fine without them and needs to be off them for skin prick tests. They make no difference to blood tests. You may have been too worried to take this in but pediatric consultants don't always get allergies right. My teenager has seen both allergy consultant and paediatrician and there was no comparison.

I have had to adminster an epipen and my child - who was terrified of needles before using it - said it was no big deal. I can't ask about the racing heart as they are in bed but they get what people call " a sense of impending doom" - i.e they are scared and the pen brings quick relief. I used to be reluctant to use one because my child was so scared of needles - now I would use one far sooner. They get a small bruise that goes quite rapidly and their arm is slightly sore for a short time. It is a lot better than having a dead child. My child was unable to speak and minutes from death - then telling me off for not getting it right a few minutes later. I forgot to rub the spot, it was still very effective.

The next reaction may not be worse, they are unpredictable. As you are going to be paranoid about nuts the next reaction will probably involve less nut and will quite possibly be less severe. We had one bad, several mild, then the worst of the lot - and to a food supposedly nut free. You need to keep the epipens handy and be prepared to use them but with care you can go years without any trace of reaction.

BBF has given you good advice, especially about trainer pens, they give confidence. It is terrifying at first but in time it does get easier.

I agree with Tatt about antihistamines masking the onset of a reaction. I was told to avoid use every day.

Tatt that is also a good point about rubbing the skin, I just wish the leaflet would explain WHY not just tell you to do it as it could be misunderstood.

What wonderful advice. Thank you all so much. I have emailed Dr Clarke, although we are in Wiltshire so may not get to see him, but I am prepared to pay and travel anywhere!
I think what it makes it all worse is that my husband and I work full time abd we have nanny who comes in every day (she has been on courses for Epi pens in the past thank god) so as well as the normal guilt that follows you around being a working parent, you having an added feeling of fear as you can't see him throughout the day to check he's OK. The pre-school are great and have now had training in how to use the Epi pen and send home his snack menu each week for us to opt in or out of. And thanks to one of your earlier posts on here, I have sent in some 'safe' snacks to pre school so he can swap if there is something he doesn't like.
He starts school in September so we will make them aware too.
If we don't feel the pediatric Consultant is thorough enough or we just come to a conclusion of 'that's it' pff you go - where would you go next? Dr Clarke of course if we can, but is there any merit in exploring Allergy clinics or private immunology clinics? (not that I even know if they exist!)
Thanks to you all so far.
x

Chasbelle - sadly we cannot be with our kids 24/7 and it is very hard to trust other people but it is all part of it. As long as you are always well prepared and take the right steps to train the right people then all should be well. At the end of the day shithappens and it is how we deal with it is what matters.

I am not sure about 'where to go next'. As far as I know the only desensitization programme t full blown peanut allergy is at addenbrookes and I don't think they take kids till 8. Not sure, you would need to check with them.

I think we spent years looking for something to make our lives easier and finally it happened but not until SDD was 10.

Once you have your test results you can start to take more decisions and plan what you are going to do.

Sorry, I am not being much help, v tired tonight. SDD has been at hospital all day as she broke her arm- eeeek. Had to have reset under general, at least we did not have to worry about the hospital food!!

xx

I would travel at least 100 miles to see an allergy consultant instead of the paediatrician we saw. BSACI is where you check for allergy clinics run by professionals www.bsaci.org/index.php?option=com_clinics&Itemid=26 but there aren't many and they don't all do private patients. London may be your best better if you feel you need a second opinion. The etsts themselves are pretty standard so you may as well get them done by the paediatrician. Only advantage of an allergy consultant is that you wouldn't have to explain why you'd like tests for lupine and -if he doesn't eat it OK already - sesame and maybe pine nut. All are more likely to be a problem in the nut allergic.

I recommend a voice recorder for recording what the consultant says. Then you can play it back later and make sure you haven't missed anything.

Hi
I've only just seen your message as I was doing a search on nut free cakes on Google.
It is awful when your child is first diagnosed with a nut allergy - I remember the sleepless nights and constant worry about food well.
My daughter was diagnosed with a severe nut allergy 2 years ago - she is now 5 and in Reception class at school.
For nut free cakes and chocolate see:
It's Nut Free, Fabulous Bakin boys and Kinnerton.
Nestle have a nut free list which includes smarties and aero chocolate which is useful for making and decorating chocolate cakes. Mcvities also have a nut free list - so there are plenty of opportunities to eat this sort of thing. Also, for puddings, fromage frais e.g. Frubes, petit filous are all absolutely OK.
I started to make cakes myself instead of buying them after my daughter was diagnosed, and now make them as a small business. I won't send you the link as that's not why I've added this post, but if you want any nut free recipes for sugarpaste icing (the kind that you roll out), I can give this to you. Ready rolled and some ready to roll icing contain traces of almonds, so I always make my own from scratch.
For holidays: We now go self catering, and usually take the car ferry to France. This is great, the only thing we need to avoid is croissants, and buying bread from a patisserie where they handle nuts. Bread from a French supermarket is fine (for us anyway - no rashes or reaction at all).
We went this year for the first time further afield to Greece (self catering again) - and this was also fine as they use olive oil for cooking - you just need to avoid puddings and icecreams - as ever!
It gets easier to cope with, and as soon as your child is properly aware of what she can't and can have, it gets easier still.
At school the only problem I've had is packed lunch sharing amongst the small children, which the staff have now clamped down on after I complained.
Good luck and best wishes.

Hi again
I forgot to add - Lupin flour (related to peanut allergy as you know) is being used increasingly in this country and in France as it's higher in protein than wheat flour and gives a yellow colour to make a product look more wholesome and "eggy".
We therefore avoid any bread products in France that contain lupin flour and if there is any doubt, we don't try it.
You can also get translation cards to show to waiters etc to let them know that your child can't have any products containing nuts traces or their derivatives, and a card that says call an ambulance. This was really useful on holiday in Greece to put our minds at rest, but I can speak some French and so we get by in France.
All EU countries have to now say if a product contains or may contain nuts in their labelling by law.