Please reasure me as I am having a bit of a wobble

[craziedaisy]

My DS has very severe hayfever and recently saw a consultant at St Thomas' who has agreed that he can start a desintization programme with Grazax. We have to go back to St Thomas' for his first dose soon where he will be monitored to make sure he doesn't have any severe reaction. I was overjoyed to start with because I am hoping that this will make his summers more enjoyable in the furture but I am now very anxious about the possibility of a serious initial reaction, especially as I have been pushing for this for a while.

Has anyone had any experience of Grazax or any other desensitization programme.

We've been doing a desensitisation programme for milk for nearly 2 years now (in our case it is just taking increasing daily doses of boiled milk, with a special medicine half an hour before)... it has been scary at times, but I have been truly amazed at DS1's progress - at the start he would react to 0.75 ml but now he has 200 ml a day! He is anaphylactic in the sense that he will have a systemic reaction (skin, breathing, digestion), but has never had anaphylactic shock.

I think the fact that the first dose is in hospital (will all of them be in hospital?) and that your son will be monitored should reassure you. Chances are that it will be ok, and if there is a problem he is in the right place. I know with ours they had very precise system for calculatiing where to start etc, based on his level of sensitivity.

For us the actual doses have been fine, with just some minor skin reactions. He did have to go to hospital twice but it was because he did exercise after taking the milk (the first time we didn't realise this could be a problem, and apparently it isn't for everyone, and the second time we forgot).

It is so hard actually giving your child something that could make them react, but I've come to the conclusion that in the end the odd reaction is par for the course with this kind of condition, so you might as well be trying the desensitisation thing if you can (he could get a reaction just from general exposure, so it's not all that different really). I try to keep focused on the end goal (without being over-optimistic) as it really would make such a difference to us all.

Good luck!!

Yes and it's life changing. Scary, very scary I grant you. However, we felt we owed it to sdd to give her the very best shot at 'normal'. Keep strong, you are in really good hands at St Thomas' and the medical teams really are in this to take risks, they are ready for anything and we were so well monitored always.

Good luck and please keep us informed with progress.

Hi thanks so much both for your lovely messages. We went yesterday and DS had his first tablet under his tongue. Sent him to the waiting room where he vomited everywhere. He then had very itchy mouth and tongue but they gave him a large dose of Piriton which calmed everything down quite quickly.They were great and monitored him very carefully which made me feel a little less anxious. I am however having a little panic today as when he comes home from school I have to give him his second dose. They said that we should quarter the tablet and then build up over the next 3 weeks. I just feel less confident knowing that there is no nurse standing by. We are about half and hour away from A&E.....

BlueBumedFly did your DC have Grazax too?

Well done for getting through yesterday, and good luck for today! I'm sure that if his reaction yesterday was controlled quickly with Piriton and you are now quartering the dose it should be ok today (fingers crossed anyway)! If you're really worried maybe you could go out a bit closer to A&E, half way between there and home or something?

Let us know how it goes!

Hiya
No, sdd was on peanut desensitization with actual peanuts.

Quarter dose should be well controlled by Piraton if it did its job with a whole tablet yesterday? Do you have epipens for emergencies? Although you are so far from A&E you would call an ambulance anyway - are they any closer?

I can totally understand your worries, but a quarter tablet versus a whole will hopefully not raise such a reaction but at the same time I would be concerned. However, into the face of adversity we go for the good of their lives. Let us know how you get on?

Now all I need to do is take my own advise and check egg sensitivity with little dd3!

Well we are still hanging in there. Stepped up to half a tablet last night with 2.5ml of Piriton and didn't seem to have too severe a reaction so fingers crossed. Weta please could you tell me more about exercise after taking milk. How long after do you have to remain quiet? DS going to school disco tonight where I know they will running around like mad things so really interested to know how long after milk can your DC take exercise.

Many thanks

Only 4!! For Valentines. God knows what he will be doing by the time he hits 10!

Sorry - I didn't see this yesterday! I think your situation may well be different anyway, as the problem for us is that the digestion of the milk is affected by exercise, as the exercise makes the gut lining more permeable and so the milk proteins go through more quickly (or something like that). But given that yours isn't a food issue, I imagine it may not be a problem. Do check with your consultant anyway.

DS1 is supposed to wait 2 hours after the milk before exercising (not easy to police this twice a day!) but the two reactions we had were when he exercised about half an hour after the milk.

We were told 2 hours afterwards too. Not stock still but not tearing around and defo no dose close to bedtime x

Thanks for your messages. I called St Thomas' but they weren't really able to give me a proper answer really. They said that it in theory it could make him dizzy and light headed if he did exercise but every child is different. I feel so sorry for DS at the moment. All he seems to do is come home from school have the piriton, half and hour later take the Grazax which at the moment still makes him feel pretty terrible for the first 20 mins. Feeling sick (sometimes he is), he drools and finds it sore to swallow and generally feels fed up, yet never complains about taking it bless him. He then feels pretty washed out and only wants to sit and watch TV before tea, bath and bed. He has had to miss going on play dates after school and I question whether I am doing the right thing. They have suggested that I up the Piriton to 5ml but feel a bit worried about doing this as 2.5ml makes him feel sleepy. Does any one else give 5ml to their 5 year old?

Many thanks

I've also given my 4.5 yr old 5ml when he's had a bad dose of allergic hives but it never makes him sleepy unfortunately!

craziedaisy I don't know about the Piriton as we aren't in the UK and don't have it, but I wanted to comment on something else you said. Only you can decide whether this is the right thing to do, but you might feel better about it if you could try and compensate for the things he is missing out on - maybe try and organise some playdates at the weekend for him? or could he go to one for a short time (maybe have the Piriton there) and then have his dose a little bit later than usual?

I've certainly questioned myself about our desensitisation programme sometimes when DS1 has hated drinking the milk or it has made him feel uncomfortable. In our case it hasn't really stopped him doing anything (although a 4-night school trip was quite a challenge to organise) but we have tried to offer him incentives to compensate for some of the hardships.