Knowing what to do when you don't know the count..

Julie,

You sound as though you are having a really overwhelming time with ITP, which is probably not helped by a lot of treatment in a short space of time. I am not sure if kids with chronic ITP are any different than adult with chronic ITP. I suspect not, although I know it can be a more serious illness in older people.

I don't really know what it is like for adults in the UK, but kids here don't usually get treated unless they have bleeding symptoms on the basis that the cure can be worse than the illness. As my son doesn't have any bleeding problems, he has only ever ever had a short course of steroids, despite having very low counts on occasions. The doctors treat the symptoms and not the count.

Not getting treatment might be a reasonable choice to make, but make sure you have a good chat with your doctor first so that you can properly assess the risks and benefits. If you decide not to treat, you also need to agree the symptoms which would send you to the doctors fast if you ever had them.

All the best with whatever you decide to do, Ali

I hope we don't live to regret this decision, but we've decided to let Dougie go to the mountain biking on Thursday. I talked to the providers of the activity and they are happy that they can look after him, and Dougie himself has promised to be sensible and to wear whatever safety equipment I can think of - elbow pads, knee pads, full face helmet......... Two of his brothers are going with him, and I know they will look after him too.

I've been at the hospital so many times over the last couple of years with my eldest son and BMX injuries (the worst of which involved sewing his ear back on) that it is going to make me very nervous all day. Thats my problem though. I really really hope he enjoys the day and makes all that worry worthwhile!

Fingers firmly crossed , Ali

Julie - you'd really do better posting in the adult section. Treating adults and children are two different things. Generally speaking, living with and not treating counts in the 30's is acceptable for an adult. Some even take that into the 20's. Take the discussion upstairs and see what the adults have to say.

Ali-I'm sorry to hear Dougie's counts are still low! I hope he plays it safe and doesn't try too many rough things during his mountain bike ride. Too bad they don't treat him with Prednisone so that his counts will be in a better range for him. I know the UK doesn't believe in treating children, but just for the sanity part of it on the parent's side of it...I'd want the platelet count up for any activities where there is a potential for head injuries. Hopefully that helmet will give him all the protection he needs and he has no falls! Caitlin missed out on doing her normal routine for 2 competitions last year due to counts under 20. (We only allowed her to do the dance and the cheer, but no basing or flying, or tumbling with flips.)

I pray you are able to get through that day without too much worry!

Sent out three clean(ish) children this morning. Just got three mud creatures back - head to toe mud, happy, tired and most importantly safe. I can breathe again. The only possible downside is that they enjoyed it so much they want to go again in the Easter holidays. But who knows where Dougie's platelets will be then........

Thanks for the reassuring comments, Ali