Progress on our dairy desensitisation protocol

[Weta]

After 2 years of gradually increasing doses of boiled milk from 1/10 of a drop to 250 ml a day, DS1's latest blood tests are brilliant!!

IgE level for CMP started at 30, went up to 35 in the first couple of months and is now down to 3.

IgE for casein started at 43, went up to 53 and is now down to 5.

Skin prick weals have also reduced in size, although not as dramatically.

I can't believe the difference, although going out for a cheesy pizza still feels a long way off... we'll keep plugging away though - next step is gradually to introduce increasing amounts of non-boiled milk into the boiled milk.

Thanks again for the support I've received on here when we've had a few wobbles along the way.

WOW - that's fantastic Weta! It's always great to hear success stories . Do you feel less anxious around milk/checking ingredients, or has that not changed?

Not that I'm saying you're anxious! I am though, and wonder if that will ever go...

Oh wow, that's amazing! I've been given a dairy reintroduction protocol for DS 2 but it starts with rich tea biscuits! After w days of sore tummies and explosive diahroeah I stopped.

Yours sounds much better although I'm guessing g your DS had anaphylactic reactions to dairy whereas mine doesn't.

How do you measure 1 /10 of a drop?

Likeaninjanow I guess we are slightly less anxious because a tiny trace here or there clearly won't make much difference. But doing the protocol means his body is constantly being challenged to the limit, so we do have to be very careful not to be giving him any more milk than where he's up to with the protocol. Though I just saw on the new one for non-boiled milk that theoretically after 6 months or so the aim is to have cow's yoghurts and cheese - I try not to think too far into the future though.

HairyMaclary yes he is/was anaphylactic (initially reaction kicked in at 0.75 ml) so we had to start very small. You measure it by diluting the milk 10 times and then taking one drop using a small syringe (20 drops to a ml), but of course any kind of desensitisation protocol should only be done under very close medical supervision!

Weta I am thrilled for you and your family, so many congrats for sticking with it, it's a tough old road we know!

To add to the good news SDD still going strong with nut desensitisation and DD had her first successful egg challenge with half a teaspoon of done to death omlette and all good.

Baby steps are the way too go! Keep on keeping on!

... Or even 'to' go. Dreadful grammar BBf!!

Weta, how exciting! Congratulations - the results seem amazing and I'm welling up writing this. It's so so good to hear some positive news.

Can I ask, how old was your DS when he started this? Did you do this privately?

I'd love for DD to be desensitised but I think she is too young.

I think these desensitisation programs are great and that all the parents like you who are giving them a go are super brave and amazing and the fact that these results are so positive hopefully means they'll be made available to all or our kids in the not too distant future.

Congratulations again and good luck with the non boiled milk. I look forward to hearing how your DS does.
xxx

BB I'll just put it on here - it's the Centre Hospitalier Universitaire de Nancy. Here is a link to info about a study done by our specialist's ex-boss, I believe:
www.ncbi.nlm.nih.gov/pubmed/17375736
Our own protocol is at the Kannerklinik in Luxembourg.

BBF that is fantastic news for both your SDD and your DD. Does your SDD have to have a daily nut dose then? and can she eat 'normal' food without worrying too much, or does she have to be careful about what the total cumulative dose adds up to?

DS1 has found it hard going sometimes as he hates the taste of milk, though we have now started making chocolate puddings (from powder) with his boiled milk and he genuinely enjoys those. Also made mini pancakes last weekend (subtracting milk intake from his daily dose) and he was over the moon!

mumat39 we are in Luxembourg so different system and different treatment options by the sound of it. Not private though. He started at age 6.5 - I think the specialist would have preferred to start slightly earlier (say around 5) but we only moved to Luxembourg when he was 6 and our previous specialist had recommended total eviction. I know you're still in that very tough phase of getting used to the whole allergy scene - hope the dust is gradually starting to settle for you!!

Weta - we were on a daily dose but now a weekly dose driven by the reduction of IgE levels. SDD also hates the taste of nuts, I really do believe the body 'knows best' however, keeping them safe is more important. Yes, cummalitive levels do have to be considered, especially in hay fever season etc. However, generally no label reading and all foods are fine other than snickers bars obviously. All good though!

BBF that's very encouraging, thanks! I try really hard not to project too far into the future in case we get to a point where we can't go any further, but I had wondered a bit about how it works if you do get to the other end...

Sorry to be dim, but why can't she have snickers bars if she is ok to eat actual peanuts? or is it a question of quantity?

DS1 did have a serious reaction in hay fever season last year as a result of doing exercise shortly after taking milk dose - interesting that this could be an ongoing issue.

Know exactly what you mean about feeling that the child's body knows best, but I agree with you about the safety, especially as our specialist thought DS1 was likely to keep getting worse if we did nothing.

Exactly right re Snickers Bar being just too much in quantity. Essentially she has had more in quantity under hospital supervision and been fine but why push it. Cummalitive antigens are a definite concern, say on a nut day with high pollen and a cat in a dusty room is a recipe for sneazing, bunged up, swollen eyes and general discomfort, but we try to avoid clashing these things wherever possible.

Exercise too is a point to consider when dosing but you have to avoid past 4pm too with nuts so always a challenge.

Keep on keeping on is what I say, every day they are more self-aware and more responsible and hopefully just that little safer xx

What's the quote about doing nothing? The only thing necessary for the triumph of evil is for good men to do nothing.~Edmund Burke

So we do something and hope we are right :)

Hi Weta. Happened onto your post for the first time. What a great story. Our son is 6. Very contact allergic to dairy. Rashes to trace amounts. We use a very careful immunologist in Auckland (since 6 months) when first rxtn (lip swelling to first taste of dairy). We have been super careful with avoiding even traces. School going ok, lots of handwipes. Very interested in desensentisation. We got our rast down to 1 then at 3 yrs of age, with no change on our part, it jumped over the next couple years to 21 :(. Been stable at 21 for a year. We see the immunologist in a week for rpt RAST. Keen to talk to him about desensitisation. Was your son still getting reactions or ha things settled down when you started desensitisation?

Hi EJMM. I'm from Wellington :)

My son started the desensitisation at age 6.5 when we moved to Luxembourg. We were previously in France where we had been encouraged to avoid dairy completely, though the advice on traces changed a bit depending on his blood results. However, his RAST results seemed to be getting worse rather than better and the doctor here in Luxembourg thought it was important to do something rather than nothing as she had seen cases where kids just kept getting worse and then were having increasingly serious reactions to tiny tiny traces.

He had to do a food challenge in hospital to start with, to see at what point he would start reacting. It turned out to be 0.75 ml, which normally is not considered enough to start a desensitisation protocol. However, the doctor thought it was worth a try so we started with very very tiny amounts (based on his reactivity threshold) which he had to hold under his tongue for 2 minutes. But I know this isn't offered everywhere as it is all relatively new.

Good luck with your appointment.