First milk challenge...scared mom here, please tell me what to expect

[eskimomama]

Hello all

I saw another "challenge" thread but didn't want to hijack it :)
DD (20 months) has been scheduled for a milk challenge at the hospital in 2 weeks' time, after negative results for both skin and blood tests.

They told me (I live in France now) not to bring her food, she will eat hospital food (bit skeptical on that one - what's the point?! I'm not gonna add dairy to her food am I!) and they will give her little bits of milk every 2 hours, and that we'll need to be there from 8.30am to 3.30pm...quite a long day for DD.

Last time they were extremely rough - twiddling the needle inside her little arm for the blood test while holding her down the bed like a psycho - no need to say DD screaming of fear/pain and now she is screaming at the simple view of a doctor/nurse in fear of another torture session.

I'm just quite worried about the whole process - will someone stay with us the whole time, how do I manage for her to nap properly, can I feed her my own homemade food behind their back just in case she refuses the hospital food...

I'd be really grateful if you could tell me a bit what to expect or any advice on what to bring etc...

THANKS!!

Hi there, I can totally understand your feelings as I was really nervous about my DS's wheat challenge last year. It is a long day but your child should be closely monitored throughout. I would take plenty of toys/books etc to keep her amused. The hospital also told us that food would be provided for my son during the day but ironically the canteen weren't able to provide a meal that was free from milk, wheat and egg so it was a good job we had food with us! The only thing he could have was a banana and orange juice so personally I would recommend taking your own food just in case. Napping might be difficult even though there were beds/cots in the unit we were in I'm not sure this is always the case plus it's very noisy but I think your best bet would be the pushchair if your DD will sleep in there. There were no blood tests involved but that might differ from hospital to hospital and it is horrible when it goes wrong, as ours did, but I believe it's worth the risk to find out if they've outgrown the allergy. Good luck and let us know it goes x

thanks freefrommum, this is really helpful information. Thanks for the tips!

Hi Eskimomama,

Where in France are you? I imagine the protocols will differ from place to place and it may be worth ringing up just to check a few things so you know how it will go.

We did a milk challenge in Montpellier when DS1 was 2. I think one of the reasons not to bring food is that they may be worried about possible contamination and they will want to be absolutely sure that there is no chance of it (for both your DD and other children doing challenges for other foods). I don't think DS1 was allowed any food other than the milk until the challenge was over...

I would take some food in your bag, but also plenty of toys and things and maybe little toys as treats for during the day.

The worst part was putting in the canula as DS1 kept wriggling and they struggled to find the right vein or whatever. I don't know whether you will have to have a canula put in, but we certainly did in Montpellier and then again in Luxembourg.

The 'goal' was to reach 50 ml so he could do a desensitisation programme but he was already vomiting etc at 5 ml. But his blood tests were still showing quite high sensitivity, so I'm sure with negative blood tests you will have a much better chance and your DD may well not have much of a reaction at all, if any. Will keep my fingers crossed for you.

To be honest, the whole experience was pretty horrible, but it is only one day and it has to be worth it if there is a chance she is no longer allergic. I try to keep it in perspective by remembering that there are kids with far worse health issues which involve painful procedures on an ongoing basis.

Oh, and I did find the approach differed considerably from our consultant in Montpellier to the one we have in Luxembourg (also French and works mainly in Nancy) - the one here is much gentler and stopped the challenge as soon as his reaction started, whereas the other one pushed it a lot further. So it really does differ from hospital to hospital.

Thanks Weta and thanks Babybarrister.
Weta - I'm near Geneva (hospital in the French side though)
Thanks for saying they differed in Montpellier and Lux, I will def keep my mouth open if I see that they are being rougher than they should be. To this day I had never seen such a painful blood tests. We had one at 7 months in London and DD didn't even notice what was happening, I spoke with my GP here afterwards and he said a blootest shouldn't hurt at all, that nurse was just careless a DD was just another patient to her.

Why wasn't your DS allowed any food ALL day?? didn't they know a toddler cannot function if hungry??

Now about the cannula - I must say you've scared me a bit. Did you DS have a blood tests prior to the challenge or did they do everything on the same day?
My DD had the blood tests 2 weeks ago (0.23 KUA/l for milk) and as far as I understood she will just be given milk every 2 hours or so.
Sorry for my ignorance but why the desensitization program at that stage, if he had positive results?

oops sorry so many typos above

DS had a milk challenge in December, which he failed in the last syringe of milk. He didn't have to have a canula in. He wasn't allowed anything to eat from 7am until we left at about 2pm. It's to make sure that they aren't reacting to something other than the food being tested. We also did a tomato challenge when he was about a year old. Neither time he seemed particularly bothered by not having anything to eat.

It is a long day, so make sure you take some entertainment and snacks for when the challenge is over.

The food thing is for the reasons trixymalixy says, though like her I think we left early to mid-afternoon. We just had to keep distracting him with toys etc, and to be honest that part wasn't as hard as I was expecting.

As for the canula, I'm sorry if I scared you! might be worth ringing up about just so you know what to expect? we certainly had to have it both times, and I had to have one when giving birth (as per protocol for every woman giving birth) so I suspect it is much more common in French hospitals.

We had the blood tests in advance I think - sorry, this was 5 years ago!! the one in Lux was last year but I'm pretty sure the tests were in advance here too. Though once they have a canula in the blood test is fine really.

I think their idea was that if he could manage 50 ml (but not more than that) then gradual desensitisation would be needed to up his tolerance, but if he could do say 200 ml straight off then it would be fine just to start drinking it. After the one in Lux (where he started reacting at 0.75 ml) we have been doing a desensitisation programme for the last year or so and he is now having 60 ml a day, so it feels like a big milestone for us :) But as I say, your daughter sounds a lot less sensitive and her blood results sound really good, so I am sure you have a good chance of it working out well.

Thanks weta and trixymalixy.
So do they give them milk with a syringe, as for Calpol etc?

Weta, when you say your DS can have 60ml a day, is this only pure milk, or can he have other foods containing dairy (biscuits etc) as well as the 60 ml? How about yoghurts? Also, what kind of tolerance does he have now, is he completely fine? My DP (who is against dairy by principle, and intolerant himself) says our DD shouldn't have dairy full stop, even if tests show she's grown out of her allergy, as she might still be intolerant and it might give her tummy aches/diarrhea etc. anyway... Not sure what I think myself.

(and thanks so much for all the details, super helpful!!! hope life in Lux is treating you and your family well, I was living there 5 years ago myself)

They did give cow's milk and soya milk in a syringe at the hospital we go to.

DS has outgrown a couple of allergies and with soya and beans he did complain of a sore tummy a couple of times , so we cut back on it and tried again later and now he has no problems at all with either.

DS tolerated quite a bit of milk before reacting at his milk challenge so the consultant wanted us to try and up his tolerance with biscuits with milk baked in. It hasn't been very successful as he seems more sensitive to milk than he did before the challenge.

Thanks a lot Trixy.
I bet it must have been a bit disheartening when all was going well until the last syringe. Hope his sensitivity comes down soon.

Hi Eskimama - sorry, I've been out of action the last few days!

Yes ours was with a syringe too.

My DS is on a very closely monitored desensitisation protocol, which we started over a year ago. He is still allergic and we started the protocol because the doctor thought it was likely to continue getting worse rather than better if we didn't do something (I know there are lots of different views about this).

He has strictly controlled doses of boiled milk every day but no other milk in any form. When we started his milk challenge sparked a reaction at 0.75 ml so we started with minuscule doses under the tongue and gradually increased so that he is now having 60 ml a day.

He is fine with it but he did have an allergic reaction a month or so back (not to the milk itself but we think to birch pollen combined with exercise combined with having had his milk dose - like his body was kind of saturated and couldn't cope with the pollen on top of everything else). When his dose increases he will get a bit of itching in his tongue and maybe a slightly swollen lip but then gets used to the dose and it's ok (we stay on each dose for a few weeks).

No matter what dose he finally gets up to, he will have to continue having milk every day or the induced tolerance will wear off. He sees the consultant regularly and she does prick tests to make sure the doses are not making him worse - both these and the IgE tests went up initially (as expected) but are now down below what they were when we started the protocol.

Sorry - all a bit long to explain but that's where we are at! all monitored by consultant though, I wouldn't do it any other way.

Yes, Lux is lovely thanks :)

Let us know how you get on...

That's really interesting weta, I had heard of peanut desensitisation from one of the mums on here, but hadn't heard of it being done with milk allergy. Is the idea that eventually he'll be able to eat milk products as normal or just that he will not have an anyphlactic reaction of exposed by accident?

Eskimo, I was just utterly amazed at how much he tolerated. This might sound a bit weird but I was almost relieved that he failed as I don't think I would have trusted the results as I was so convinced he would fail. Next time I will be more prepared for him passing!! Fingers crossed it happens eventually!!

That's very interesting Weta - I had the same question as Trixy about the main purpose behind the desensitisation.

Trixy , I am feeling the same as you prior to the challenge, we have been keeping away from dairy in any form for so long and so religiously that I can hardly believe she has grown out of it just yet, and will gulp down yoghurts in a few weeks time. Also don't want to keep my hopes too high or I'll be really disappointed if she "fails" the challenge.
Anyway, fingers crossed our little ones will get rid of these nasty allergies asap.

The end goal depends on how the protocol goes really. We're already really pleased to be up to 60 ml a day as it means we are much less afraid of an anaphylactic reaction to tiny quantities. So I guess it feels like phase 1 has been successful (kind of needed to reach 40-50 ml for this I think). Next step is to see how much he can tolerate - I think if he gets to 200 or 250 he can have yoghurts and cheese, although I'm not thinking that far ahead and just trying to take it as it comes.