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ds2 just diagnosed wiith severe peanut allergy. Feeling confused!(27 Posts)
Ds2 (age 10) has had epipen for 5 years as suffers from brittle asthma and had severe reaction to kiwi fruit when he was 5. he had skin prick test which confirmed kiwi allergy and came back negative to peanuts.
About a fortnight ago he finished eating his tea and suddenly started to suffer an anaphalactic reaction. we had skin prick testing today and it came back negative for kiwi and positive for peanuts. Given the severity of the reaction and the fact that it was mango chutney (which said may contain traces of nuts) that triggered it, he has been advised to avoid anything with nut traces.
I'm really confused. he has been avoiding kiwi for 5 years and it turns out he isn't allergic to it and we haven't avoided nuts and it seems he's suddenly highly allergic. has anyone else had this sort of sudden reaction out of the blue at about his age?
Also, I've got info from supermarkets and some of the big companies and their labelling seems good but I'm worried about eating out, parties, the epipen getting lost/left somewhere (as he will have to carry it with him). I feel like I've entered a whole new world. Would love some advice!
Bumping for you. I have started a similar thread and know exactly how you're feeling. I have no answers I'm afraid
allergies start at any age. my son was born an allergic person, we discovered his list of allergies as he grew older. adding new ones to list or growing out of others.
Thanks bagofmashings. It's awful isn't it? Ds started off quite upbeat as he doesn't really realise how difficult its going to be. Its starting to hit him now though as he's going to the youth group tonight and i'm going to have to go in and check the seets they sell. He doesn't really see how important it is and I don't want to scare him too much as he can be quite anxious anyway. on the other hand he has to take it seriously. It's so hard. What is your DC allergic to?
DS's worst allergy is cashew nuts but also peanuts, almonds, hazelnuts and most other nuts I think, also egg white.
He's only 18 months so it's probably easier at the moment as he only eats what I give to him. It must be difficult for your DS to cope with. Someone on another thread suggested that I contacted the anaphylaxis society. Their web site has a lot of info I found really useful on it and there's a number to ring for more info. They might be able to help your DS understand it all.
Yeah I had a look at that, thanks. The consultant recommended one , i dont know if you've come across it- epipen.co.uk - as well which has been good from a practical point of view as they will send a trainer epipen so you and any other people can practise. Also they send text alerts when epipen is due to expire.
I have contacted a lot of the big companies and they seem to be quite good with their labelling. It's just eating out and social things (when they get older) that seem to be hard. I did the shopping today and it wasn't as hard as I had expected as there were reasonable nut free alternatives to most things. Ds is at lots of parties next week so I have been ringing lots of places and actually everywhere has been really helpful. The problem is you can't eliminate the risk completely so I suppose I just need to learn to weigh up the risks objectively! Not easy at the moment but hopefully it will get easier!
Definitely contact Anaphylaxis Campaign as they can offer you loads of really useful advice. They have a website and helpline plus they run family workshops around the UK. It is hard but it is do-able. My DS is 5 and allergic to milk, wheat, eggs & nuts. I also have an 11 yr old DD who was diagnosed as coeliac 18mths ago and this was in fact harder for her than it is for DS as he's never known any different so I do understand how hard it is for your DS at his age.
Yeah I think I will ring the helpline. It's the not wanting to be different at parties that ds is finding hard but talking to someone who understands might help me cope a bit better. I feel I'm floundering a bit at the moment, especially as when I try to explain it and people don't really seem to understand how serious it is. e has a party tomorrow and is going to McDonald's. They list a few things as nut free but it isn't clear if that means there are no nuts in the ingredients or if it has no traces of nuts either. I rang up but they didn't really know and ended up saying if in doubt bring our own food but he was going to eat after party so it would have to be something cold like sandwiches which would really set him apart from the others. 'M still not sure what to do.
Sympathy from here.
You do get used to carrying the epipens around with you & can also prime the child to remind you.
Has he got a medic alert bracelet? We got a sport strap one for dd from universal medical.
Fwiw never had a problem with McDonalds food- its one of the only places we can take dd out to eat.
Thanks . i didn't think of bracelet. It would make me feel a bit better in some ways but i have a feeling he will feel really self conscious with it. He's at that age where he just wants to be exactly the same as his friends. What is universal medical? Haven't heard of it but I'll google it. Ds does like sport so he might be persuaded to wear that. It's not just the epipens he needs to carry, he also needs his inhaler and spacer as when he had the anaphalactic reaction, it triggered severe asthma and I'm worried his small inhaler wouldn't be enough as he needs spacer when his attacks are bad. Sorry, i know I'm moaning, i just feel so anxious, like I can't be sure of keeping him safe.
Moan away- I have days like that too.
Dd is 4 she wears hers every day we don't give her the choice really. It's fairly inconspicuous a red strap with a silver plate on with her name engraved on.
We carry a box with her care plan two epipens two mini bottles of piriton and a treat in case we go somewhere where she can't eat what's on offer.
It's a truly horrible feeling thinking you can't always keep them safe but you can only do your very best
I think I'll have to do the same. I supopose i will get used to it. It's just such an awkward age to find out as he is desperate to fit in and be exactly the same as everyone else. He's just found out that he can't eat crunchies anymore (which he loves and has always eaten) because they share a production line with nut products. He doesn't really understand how he can suddenly not eat them when he's been fine in the past. I keep trying to explain that 99% of the time things with nut traces could be fine but its that 1% that we can't risk but he doesn't really understand.
i think the suddenness of it all has been what's shocked me. When was your dd diagnosed? did she just have a sudden reaction or did it come on gradually with less severe reactions at first?
Hope you're ok Shelsco. On another forum someone was saying that when their DC was diagnosed it felt like they were grieving the loss of their child being 'normal'. I know I'm going through that myself at the moment.
On a more practical note have you found an online shop called The nut free chocolatier? Can't link on my phone for some reason. Looks like you can still order & get in time for Xmas.
She had severe excema as a baby which was eventually diagnosed as cmp allergy which then led to testing for other allergens.
They predicted she would grow out of the cmp allergy by the time she was 3 which she did, that has made a huge difference to her diet & freedom.
Her main allergies now are egg, sesame & peanut. She is also allergic to trees & cats & other unknown triggers.
She hasn't known any different so she is used to it & is very good & very sensible.
She started wearing her medic alert when she started nursery aged 3- I thought it would be helpful for staff who came in to cover to be able to immediately spot her.
She goes through phases of seeming to have reactions all the time then being ok for a while again.
I had a wobble recently when we went for her annual review & they said its extremely unlikely she will ever grow out of her allergies except maybe egg but not for a few years.
She also had a secondary reaction to the skin prick tests.
Not a good day.!
You can get all sorts of different medic alerts online maybe he could choose it & getting him involved would encourage him to wear it?
Thanks bagof mashings. That is how i feel too, like I'm grieving. Part of me feels guilty as I know there are people who are coping with this and much worse and so I should just get on with it, but i feel scared that i don't know ever really feel he's safe once he's at at party or out without me. I'm bursting into tears at the drop of a hat and I think people just think I'm over reacting. It's reassuring to know that feeling devastated is perhaps a normal part of finding out. I will have a look for the nut free chocolatier. Nestle actually seem really good too. I've just printed out a nut free list which includes yorkie honeycomb. Might make up for not being able to have crunchies!
girlsyearsapart you sound so together -thanks for all the advice. I hope I can get to where you are soon. I've had a look at the medic alert bracelets but haven't broached it with him yet. It's funny what you said about having clusters of reactions. i think that's been happening to ds. His asthma has been worse over the last few months than it has for ages and his eyes have been swelling up (he's allergic to grass and probably other things that we have't been able to test for) so he does seem more susceptible to reactions at the moment.
He's off to mcdonalds this afternoon. we know which things are nut free but notice there's a statement saying nothing can ever be guaranteed as not contaminated by nuts. I've told him to have the chicken nuggets but not to have a dessert as thought there might be more chance of cross contamination with ice cream etc.
Just to say that for nut allergies, McDonald's is actually one of the safest places to eat as nothing in their normal menu contains nuts. Occasionally a promotional item might contain nuts (eg McFlurry) but this should be clearly labelled. You can find all the allergen info on their website: www.mcdonalds.co.uk/ukhome/whatmakesmcdonalds/questions/food/allergy/what-products-are-safe-for-people-with-a-nut-allergy.html
Thanks, that makes me feel better. I've had my phone by my side since he set off and I've been checking it every two minutes!
I did look at Mcdonalds website and saw things labelled nut free but they all had 2 asterixes which when I looked to see what it meant said that they cannot guarantee that there would not be cross contamination from nut products. As it was cross contamination which caused his initial reaction, it didn't really help. I know sometimes companies might be covering themselves but they might also be saying that a product has shared a pproduction line with nut products. I just don't know, although it is reassuring that other people seem to be saying that they find McDonalds safe which hopefully means that the warning is just to cover themselves.
The mum who is having the party has just texted me from McDonalds to say he's finished eating and seems fine which waslovely of her and has put my mind at rest.
shelsco-I have a10yr old ds who is allergic to cashews and pistachios.
He's had epipen since he was 2 .
Recently he's had 3 serious reactions to unknown things and we're waiting for a review at the allergy clinic.
He also has asthma and has to carry inhaler and spacer..life would be so much simpler if he didn't need those bulky things but hey ho the spacer is def needed.
Ds carries his in a sall back pack but tbh he leaves it at home when he's out playing as he isn't going to eat. Only takes it if he's eating somewhere. Ds is very good at deciding what he can and cannot eat. At parties he and I check the food and he tells me what he would be safe to eat (generally stuff he's had before) and I check it. Ds is very cautious about what he eats , it's a fine line between creating anxiety and being careful.
He is getting better at telling adults about his allergy but he still needs prompting to speak up for himself in restaurants and ask the staff.He's quite shy but I think it's very important that he feels confident to tell people.
Ds wore an allergy bracelet for yrs until it was too small about a yr ago. He is having a break from it atm but I may get him to have a look at the website again since we've had some new reactions lately.
The anaphlaxis campaign do youth workshops which I think ds may be interested in when he's a bit older.
Don't worry about the crying and fretting I was exactly the same.
That workshop is definitely something i'll bear in mind for a couple of years down the line. I think meeting people in the same situation will really help him. He's actually being really sensible about it and checking everything which is reassuring.
Had to have his Sunday dinner without gravy as his nan thought stock cubes would definitely have no nuts! ( didn't check). It may have been fine but there was no allergy info so we didnt know! It must get easier when you know roughly what you can buy. I'm still emailing firms left right and centre.
My dd is allergic to to peanuts. Initially it was a terrible shock, but nearly a year down the line it has become normal to check ingredients religiously. We honestly do not find it too much of a problem. I think also you get better at assessing risks about what "trace' food is going to be OK and what isn't. "Traces of" in apply juice is almost certainly going to be OK, "traces" in chocolate isn't. It's a learning curve and you're at the start of it. Soon it will seem much less daunting, I promise.
Also, do you know about the research going on at Addenbrookes hospital in Cambridge where they have managed to desensitize kids to peanuts? My dd is currently 3 and we've been told that by the of primary school they will have put her through the desensitization program. We live in Cambridge, but I think people can now request to be seen at a hospital of their choice so if you live in the East of South East, a referral to Addenbrookes may be an option.
thanks neolara, I need to people to tell me it isn't always going to feel like this! He has been referred to a dietician but we haven't got the appointment date yet. That might help me feel a bit more informed.
I had read about the research in Cambridge. Unfortunately we live in the North East so we have no chance of getting onto the programme any time soon but I'm keeping my fingers crossed that one day in the not too distant future it will become a possibility all over Britain. How fantastic if your dd can be desensitised though. It gives me hope that maybe ds won't have to live with this all his life.
How are you and your DS doing shelsco? Hope you had a good (reaction free!) Christmas & are beginning to feel less anxious now. I think I'm going to have to add reindeer to the list of my DS's allergies!
Hi Bagofmashings. am getting used to things a bit I think but still keep getting waves of panic. Feel like I have quite a few questions coming up and new problems at every turn. We thought we'd try and cook from scratch as much as possible but hadn't occurred to me that herbs and spices may have warnings on. Garlic granules from asda, for example, say may contain nuts and traces of sesame. Need to clear out the cupboard and start from scratch! Schwarz and sainsburys are very clearly labelled and in the main seem clear from most allergens which is handy to know.
I've just noticed your recent post. I didn't realised that your DC had been diagnosed so recently. Have you seen sainsburys allergy lists on their website? I thought it might be handy for you as it has lists of things that are free from both egg and nuts as well as just the nut free and egg free individual lists. They update them monthly and you can search them for specific products, which is really handy as the nut list is 93 pages long! I found it really useful as I just wanted to know which of their spices were nut free and whether they had any nut free ice cream. I'm emailing companies left right and centre at the moment as some companies don't seem to label. Are you doing the same?
Oh and why reindeer? Sorry brain not very switched on at atm!!
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