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Desensitisation for nut allergies

(4 Posts)
Warmworm Mon 16-Jan-17 09:06:21

I wondered if anyone has done this privately and what their experience was like? I think it is only the Cambridge peanut allergy clinic that offers the service?

My dd is allergic to peanuts and chickpeas. She's 12 now, and had an anaphylactic reaction at high school in her first term. She is an anxious kid anyway and worries so much about food. She won't go to sleepovers and panics about school trips. I've been reading about the desensitisation program and am thinking about doing it. I'd be so worried about her reacting though. Her blood test results for peanuts were through the roof.

I've no idea what it would cost, but we have some savings we could use. We are also a four hour drive to Cambridge. I'd love to hear from anyone who has been through the program to help us weigh up the pros and cons.

acalacaboom Mon 16-Jan-17 11:17:25

All in it costs the best part of £15,000. 7 appointments at £2,500 each and consultations either side of that at around £400 I think. Contact the clinic and they will send you all the details with no obiligation.

For us it's been life changing. DS is now in the maintenance phase where he has to have the final dose (200mg) daily for the next two years. He is only allergic to peanuts so for us it's removed all worries about 'traces' and 'may contain' as he should be able to handle accidental ingestion of a small amount of peanut. A whole new world of nutella, chinese takeaway, sugared almods etc has been opened up and eating out/being away is a lot less stressful.

The fear about reacting to the doses is totally understandable, severe reactions happen extremely rarely is my understanding. You are at the clinic pretty much all morning every time you updose. You get a medical check (incl peak flow and blood pressure) each time, then the dose and then you're observed for between 2-3 hours. You can't move for nurses and doctors so if there was any kind of severe reaction you are absolutely in the best place. At the initial assessment appointment they do full bloods and skin prick tests and will answer any questions you have.

DS had minor side effects most times he updosed - dry throat, bit of a cough sometimes and occasional tummy pains but nothing he couldn't handle and he was always back in school for the afternoon. The side effects would continue for a few days as he settled into the new dose but he was always symptom free by the time the two weeks were up and we went back.

It's a big time commitment - we're relatively local (hence DS could get back to school in the afternoons) if you're 4 hours away you'd be losing every other Monday from school for pretty much a whole term (it's 7 appointments for the dosings). If you're going to do it I would say do it sooner rather than later into secondary school, although there were teenagers there. Kids come from all over for it (including overseas) so it is doable.

You have to take the same dose every day and mustn't exercise for 2 hours afterwards - DS had his dose when he got in from school in the evenings which then coincided nicely with homework, dinner, watching TV time. You can skip or or two doses in the 2 week period if you need to but you do need to try to work to avoid that - so eg when DS went away for the weekend with Scouts, he did the Friday dose in the evening when he got in from school and I drove him to the event, he missed Saturdays and then he had Sunday's when he got back. You can't take the dose if you're extremely tired/ill so I was keeping Sunday as another potential missed dose if we needed to.

For us it's been absolutely worth it, aside from all the fun new things DS can now eat/try (we'd totally avoided all nuts before now) there is much less stress about him being around friends, eating at school etc. One thing you should think about is will you get that benefit if there is still a serious chickpea allergy - DS luckily is literally only allergic to peanuts so this removed all the fear and hassle stuff.

Warmworm Mon 16-Jan-17 16:59:07

Thanks for that information, it's really interesting to hear how things have changed for you. I know we'd still have the chickpea allergy to deal with, but it's not as serious as her peanut allergy so we don't stress about cross contamination in the same way.

We could just about stretch financially. The logistics would be harder. Missing school and work, etc. If we could could coincide some dates with the summer holidays it wouldn't be so bad. I'll speak to her more about it. She also has a phobia of vomiting and if she knew the side effects might mean a sore stomach it could be enough for her to refuse to go ahead.

I just want her to be able to travel the world, eat out with friends, etc. And it's clear from her her last reaction (cross contamination from peanut butter at school) that the world is not peanut free, even if our house is.

Mortgagedilemma Wed 25-Jan-17 13:16:34

This is really interesting. I didn't know you could pay privately for desensitisation.

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