Gutted and confused after night in hospital with DS1

[Weta]

DS1 (age 7) has a severe dairy allergy - hadn't had a serious reaction for a couple of years, but on Tuesday he had to be taken to hospital in an ambulance and kept overnight.

He's fine now but I'm feeling really down! I thought we had it well controlled, and this incident has really freaked me out.

He has been doing a desensitisation programme for the last year - he reacted at 0.75 ml in a hospital challenge, but we had gradually worked up to 50 ml of boiled milk a day, IgE results have reduced and it was all quite encouraging even though progress was slow.

On Tuesday I gave his usual half-dose of 25 ml, increased by 2 ml as per protocol. Then half an hour later I took him to the park but after 10 minutes he was spitting out saliva and then started having breathing problems and getting puffy, hives, etc.

Doctor has done blood tests and thinks it was a combination of exercise just after his usual dose, plus the tests show a slight sensitivity to birch pollen (loads of pollen at the moment as I know lots of people suffering with bad hayfever). Basically she reckons his system is putting everything into coping with the milk dose and then the two extra things were just too much for it. It doesn't seem like it's the milk itself as the milk IgE result has halved since January, whereas it would have been much higher if it had triggered the reaction. Plus it wasn't like his usual reaction to milk - no vomiting, no itching in the mouth, no swollen lips.

I keep going over it in my mind, and it's really scary that it could have been triggered like this. I don't want to stop the desensitisation protocol after coming so far - I know some people disagree with them, but it has been huge for us to feel that small traces of milk are no longer a lethal danger, plus the social and freedom-related benefits of overcoming the milk allergy would be major.

He's now going to have antihistamine for a month (until the birch pollen season is finished) and isn't to do exercise for 2 hours of the milk doses.
I think we will have to start taking his meds (including epipen) everywhere, not just when he might be eating food outside the house. I don't even know how people manage this - often I drop him off and DH picks him up, so how do we cope with just one epipen? (we do have two but one is kept at school).

Don't even know why I posted really but this is the only place I know of where other people go through similar things and understand the feelings I guess... it's just so hard being responsible for another human being with a problem that could kill them, and having to make decisions for them based on the info available, even though you can never really know what the best thing to do is.

You are actually entitled to four epipens, school liason nurse who came to do talk on epipen training at my work told us that. If you request from GP you might just get if you are prepared to complain. They cost about £22 so if you can afford you could always buy extra if GP unwilling to provide.

thanks... actually we are in Luxembourg so the rules are different, but I might ask about getting more. And that's a really good point about just paying for a couple of extra ourselves if we need to - might give me a bit more peace of mind.

I have 5 epi-pens for DS. 2 for school, I @ out of school clubs, 1 for home and the spare. And he has never even had a full analphylatic reaction - or tested positive to any allergens. I take the medicines everywhere but have 2 small plastic bottles with pre measured doses of puriton in so less to carry iyswim.

DS seems to be a combination of things as well. He has started coming out in hives from the sun too so that starts off some reaction before adding in any other factors.

I have heard of exercise induced anaylphalaxis so its good advice about the excercise.

Hope your DS is feeling better.

Thank you so much for your replies. It's reassuring (I think!) to hear that we are not the only ones to have this kind of problem with a combination of factors - though kind of scary as each factor in itself didn't seem THAT big.

I hadn't heard that about airborne allergens, and will definitely be carring more inhalers now. This time we had to go home from the park (max 5 minute walk) and it was horrible, he was saying "I think I'm going to die, I can't breathe" all the way back. I called DH and he ran up the road towards us with inhaler (in fact leaving 3yo asleep, which I was ok with, and front door wide open, which I was not!!!)

Am definitely rethinking emergency kit, though he is off this week and then on holiday for 2 weeks, so that gives us a bit of a breather. And have asked for another session of emergency kit training at the hospital. I had the epipen out and was reading the instructions and trying to decide if it was necessary but then the ambulance arrived so they took it from there (he didn't have it in the end). We also found that we weren't exactly panicking but weren't very well organised either - I would be hunting for medicines and instructions and DH would already have taken them out while looking for another one and left them lying somewhere else! And in the heat of the moment I swear I wouldnt have been able to remember the emergency services number in a foreign country - am going to tape it to the phone and put it on my cellphone...

Am still struggling to get my head around him taking a bag with him somehow, although I can see that it might be the answer, and he'll have to one day. It's all quite bulky - epipen, puffer plus spacer, bottle of antihistamine and bottle of steroid medication. Also can't quite figure it round school, as it seems a bit pointless him having it with him there when the nurse already has a kit, and I can well imagine him forgetting it in the classroom or wherever.
I might post another thread about this to hear what everyone else does...

Will keep the dehydration thing in mind too and take drinks with us more.

Good point about the ambulance. To be honest, when it happened it initially seemed like a wheezing problem rather than a serious allergic reaction, and I guess I am used to thinking that the allergic reaction only comes when he has had milk (and is obvious within a few minutes), so it didn't really occur to me immediately that this is what it was. I just thought I'd better take him home to get the ventolin.

I find I am going back through that whole cycle of emotions you get when you first discover the allergy, feeling like it's all so unfair, feeling freaked out by the reality of a life-threatening condition, feeling unsure how to handle things, etc, etc. I guess I'll get a grip eventually!