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Allergies and intolerances

Desensitisation programmes?

11 replies

WhiteTrash · 02/02/2012 18:27

Ive just read about this on another thread. Ive never heard of this. Im annoyed my allergy specialist didnt tell me this was an option, but then Im annoyed at how she let us down in several ways.

Can anyone do it? Is it a particular age? Particular hospitals? Particular severities?

Ds has anaphylaxis to milk and egg. I want to give him a chance to grow out of these things but I know if he hasnt by the age of 2 (as in, at least slowlt started to have a less severe reaction via skin prick test) then I'll start panicking that he'll have it at school age.

Is there somewhere I can go to read about this?

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eragon · 02/02/2012 20:33

desensitisation is not available for food allergies at present. Those few may get on the current studies but other than that nothing.

all thats available is desen treatments for hay fever. I dont think your doc metioned it to you, purely because it isnt available on the nhs yet.

and quite frankly if the studies really work, and proving that will take a long term study on the subjects, after that going through licencing will take years, about 20 !

i wouldnt give up hope that your child might outgrow even if that takes years its still possible.

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WhiteTrash · 02/02/2012 20:39

Thank you.

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neolara · 03/02/2012 00:03

There is currently a very successful trial running at Addenbrookes hospital to desensitize children to peanuts. Maybe this is the trial you've heard about? It's not a treatment offered to the general public yet and it's limited only to peanuts although I believe they are planning to see if it works on other kinds of nuts at a later date.

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eaglewings · 03/02/2012 00:21

Yes the one at Addenbrookes has had great results but it's still new. Really helped our friends son :)

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babybarrister · 03/02/2012 08:01

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Weta · 03/02/2012 08:08

We are doing one for dairy, but we live in Luxembourg... Ours isn't a trial though, it's just something our specialist offers when she feels it's appropriate. She was previously attached to a cutting-edge allergy clinic over the border in France, and her boss there did some pioneering work in this area a few years ago, so it is all pretty new.

DS1 started the programme when we moved here at age 6 (he's now 8), mainly because he seemed to be getting worse rather than better and she said she had seen previous cases where children got worse and worse, eventually becoming anaphylactic to the tiniest traces - so she felt it was better to try to do something. He reacted to small amounts of dairy, below the normal threshold for a desensitisation programme, but she still thought it was worth a try and we just started with tiny tiny doses and built up very graduallly (he initially reacted to 0.75 ml of boiled milk and now has 200 ml a day).

Your DS is still very young though and there is a good chance he will grow out of it. And if he does still have it at school, well there are ways of managing it - the schools are very good at putting a care plan in place, the child gets used to it and becomes very sensible about managing the allergy, and the parent gets strategies in place for dealing with food. And maybe by then there will be more desensitisation programmes available in the UK anyway...

Good luck - we all know it's not easy :)

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eragon · 03/02/2012 09:48

There are two forms of desentisization, one is by oral one is shots. The uk does not do the shot one (I think, heads a bit fuzzy this morning...) due to the nhs considering the deaths from this treatment. However its still accepted practice in other countries, like usa.
The nhs is formed in a very different way to other countries health practices, and after looking in to the deaths , the uk nhs decided it wasnt worth the risk.

other countries are carrying out the oral desen, like the one dr adam fox is doing with peanut. But, still this is a treatment that hasnt been explored long term, (still hopeful) but barriers to the long term full tolerance hasnt been totally promised for some people on this treatment. Such problems as hormone changes, e.g periods, for some, or a illnesses that stops consumption of daily preventative dose, has for a small group stopped progression and caused huge set backs. Like re developing severe allergic reactions to the food.
Patients of course, agree to the risk of a allergic reaction when first dose given during this process, everything has a risk. So its a judgement call really for everyone.
I am sure if we give this time , these wrinkles will be ironed out by the doc's, but we are still looking at many years.

This is still experimental stuff, and its a gamble, and for all my personal dreams of a magic wand without side effects, in reality I want a promise that if my son was able to take part in this treatment, and mantain tolerence if he gets drunk, fools around with his health/falls ill like normal teens/adults during his lifetime he still would never have a reaction.

I think that as parents of allergic children, we do cling to the idea of a cure, often as the future looks scary for our kids.
But really the most sensible idea is to carry on as if this allergy is for life, and hope that one day outgrowing may happen. If we live clinging on to the cure/outgrowing , we may not bring up our kids to adjust /learn / gain confidence in living as an life long allergic person. Childhood is short, and we dont have much time to do this, in a blink of an eye, the teen years are upon you, and time to teach them allergy management/ and reaction avoidance is short. So denial isnt an option, changing the way we think of these allergies is more important.
our kids will live a long ,normal life compared to many, with the normal milestones of life. we would all like to make our kids lives easier, but food allergies are not the worse condition in the world, things could be much , much worse.

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WhiteTrash · 03/02/2012 10:10

Ok thank you.

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freefrommum · 03/02/2012 11:36

Well said eragon :)

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babybarrister · 03/02/2012 21:58

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Weta · 03/02/2012 22:48

To be honest that's the approach we take to our desensitisation programme anyway - we'd basically accepted that DS1 would probably have the allergy for life, and have no great expectations that anything will change. It seemed worth doing the programme, especially as there seemed to be risks associated with not doing it, but we just take each step as a bonus.

Deep down I think we always thought he wouldn't make it all the way through and that we would probably have to give up at some point, so we just take it as it comes. He still has to manage his allergy and food avoidance etc as normal for now, so he is still getting the benefit of learning how to cope with the condition and live as normal a life as possible.

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