Desensitisation to severe dairy allergy (Bluebumedfly?!)

[Weta]

We went to see DS1's new allergy specialist at the hospital today after moving to Luxembourg a few months ago. She's linked to a really renowned allergy clinic in France and thinks we should attempt really gradual desensitisation. He's 6 and has a serious anaphylactic reaction to milk protein.

I have read about this before on here and elsewhere and we were coming to the conclusion that it would be a good thing to do anyway... but I'd appreciate any advice from those who have been there. How did you get your head round it after years of being told they shouldn't have any of the allergen at all? and how did you persuade the child to do it? we have to start with a reintroduction in hospital to see where his reaction kicks in, which I am absolutely dreading.

Apart from that she thinks we shouldn't even be giving him products with traces of dairy in, which is going to mean a massive rethink of his diet... so all in all I'm still reeling. But she seemed really good and spent 2 hours with us!

I'm sorry - it seems like you're not getting experienced feedback - maybe you could try some of the US chat forums - they have different experience to the UK.
for what it's worth - if your child is so allergic, desensitisation sounds like your only hope - it's what I one day hope to be able to do for my son if there is ever a trial here.
Good luck!

Thanks for replying! We've kind of gone through a gradual mindshift (as have the experts as far as I can see) as previously were always told total avoidance was the only way to go. But it does make sense to me to give it a try, given the advantages in terms of quality of life and avoiding potentially fatal situations, and the results so far seem very promising really.

Are you in the UK? I know they have been doing trials with peanuts...

Can you suggest any US forums for me to try?

allergicgirl.blogspot.com/2009/08/childrens-hospital-boston-milk.html

have a look and follow some of their links
good luck!

Thanks, I'll have a look!

Hello!! Have been MN free for a few weeks, needed so time away. I will answer I promise....

Weta. There was a lot of talking and discussing before we embarked on our study and it has not been without it's hiccups. It is a very odd mindset to suddenly start giving her an allergen we spent her whole life avoiding.

We started by painting a picture of the future. Within a few years there will be trips out to the cinema and pizza places with friends with no parental guidance and did she want to be 'normal' or keep saying she had a nut allergy. We got her to write a list of all the foods she ever wanted to try but couldn't, all the 'fun' restaurants like TGI Fridays etc which really started to motivate her to be brave and try.

We were as uncoersive as we could bare to be as we knew what a life changing event it would be. There was lots of praise, lots of 'wow, I wish I was as brave as you' and we recruited all the family to really 'big' her up about the whole thing. She has fallen off the wagon twice, both times we sat back and just by reinstating the restrictive diet she made up her own mind to go back.

It's a massive thing for them. You are asking them to reposition themselves amongst their peer group, suddenly they are no longer 'special' and they are jus the same as every other kid which is something you would imagine they crave but you would be suprised!!

It's been hard on sdd but we are still going strong. We try to keep one thing in her head as a reminder. For sdd it is never having the chef come out of a kitchen and make a big fuss about asking 'the special girl' what she wants. So many lovely chefs, so many hideous temper tantrums at the humiliation!

Honesty and openess is required at all times. Is it life changing? You'd bet your bottom dollar it is.

I would love to help more if I can, will try to log in more to see of you come back xx

I don't really have anything to say as I don't have experience on desensitisation, but I just wanted to say as mum of another boy with severe dairy allergy I'd be really interested to know how you get on.

Please keep us posted and I really wish you good luck.

x

BBF, thanks for that - I did type out a reply the other day but evidently forgot to press submit! I agree it is a whole mindset change to think of giving the allergen, but can imagine it must be life-changing if successful. I'm wary of making promises though, in case it doesn't work!

What did your trial actually involve? did she have to have regular injections? We will get more info when we see specialist again next month but at the moment we don't really know what is involved, apart from having to go to hospital to see the threshold first. We did this before when he was 2 and it was awful, so I am not looking forward to repeating it.

When you say she's fallen off the wagon twice, what does that mean? are there any particular issues we should discuss with him first? I have had a bit of a talk with him and he wants to do it, but obviously I don't really have enough details yet.

UAM - don't worry, I'll definitely be back with more posts on this!

Hi Weta

SDD was given her allergen in the shape of peanut protein in peanut flour. First 0.5mg, then 1mg, 2mg, 4mg, 8mg etc. until we got to 360mg which was a quarter of a slice of peanut butter on toast. The up to 720mgs which was 5 peanuts. No injections, all pure allergen taken orally. She visited the hospital every two weeks and her dose was taken in the hospital setting where she was watched for 4 hours then off home to dose each day until the next appointment. The whole build up to the fist challenge took about 8 months in total. We then built up to 12 peanuts and her last challenge was 32. We are on a daily maintenance dose of 5 peanuts and will be having blood work in the new year to see what has happened to her IgE.

To say she has fallen off the wagon, I mean she has given up, gotten fed up of dosing every day (she hates the taste of peanuts) and decided enough was enough. As I said, a brief trip back to the nut restrictive diet and she was back on the dose like a flash. It was amazing how quickly we all got used to not checking packaging or worrying about cross contamination etc.

I hope that helps a bit, it is quite a task to get them motivated to try without promising the world. I am happy to answer any questions.

BBF - was that under Dr Andrew Clarke? I'm so impressed by your and your daughter's staying power - it sounds a really arduous process but the only one that gives me any hope. Well done and thanks for sharing.

Topiarygal - yes, Dr Clark, he is amazing.

Pixie, her threshold was an 8th of a peanut, now she has tolerated 32 in the space of 4 hours!

Thanks BBF, that's really helpful.
Did it cause any problems if you went on holiday during the trial? We are planning to go home to NZ for a month in July...

Oooo nice holiday.

I think they would have just kept her on that steady dose for one month as opposed to 2 weeks, I know once or twice we went for 3 week stretch due to life commitments etc.

hmm my little boy is allergic to cow milk protein too, he's also allergic to red fruit. i'm going to keep an eye on this thread.

I've just been sent a link on SLIT treatment in the US:

www.allergymoms.com/uploads/newsletters/allergymoms_newsletter_11_16_08.html#article 3

BBF, my consultant says she's going to refer my son to Dr Clark - do you know how else I might get in touch with his clinic?
thanks!

I think Dr Clarke's contact details have been posted on this site if you search. If not just phone the hospital and ask for his secretary.

My nut allergic child refuses to consider desensitisation. They feel their allergy is not a major problem (we don't feel the same way), although they hate the "special" label and try to make it as un-noticeable as possible.

BBF's daughter had a really horrid experience at school so her attitude to her allergy was quite different. If you decide you want to go for desensitisation maybe the way to go is to show your child what a problem it can be. There will be jobs they can't do, they will have to ask a boy/girlfriend what they eaten before they can kiss them/ they will sometimes go hungry because there is no suitable food for them to eat/ some people will not want to cater for them.

Thanks BBF, glad to hear holiday should be ok!

Tatt - gosh it had never occurred to me that a child might not think their allergy was a problem. Maybe that's one of the upsides of DS1 having spent most of his life in allergy-unaware France and now Luxembourg, where nobody has ever catered for him apart from me and the odd parent of a friend.

He doesn't mind either way about the 'special' label I don't think, but he hates seeing all this delicious-looking food that he can't eat, and doesn't like having a heavy schoolbag because he has to take his own food to the school canteen. He also hates the 'accidents' that do happen from time to time. So when I mentioned the desensitisation, including the provocation test in hospital which will be very unpleasant, he was keen to give it a go. Fingers crossed he keeps up the positive attitude.

mmm - my DS is 7 and i've explained the pain of going through desensitisation and he's still keen to learn more. He's on permanent antihistamine and still has anaphylactic on touch to tree nuts or tree nut pollen ... anything would be good!

it does change Weta. We have had the "why me" and "if I have to have an allergy why can't it be ...insert healthy food they don't want to eat". However as they grow older I think they'll start to see the problems again, especially being able to travel with friends.