Rash

This is a question, but I appreciate that there might not be a perfect answer!

Dougie has had fresh petechiae on his legs just about every day now for the last 4 or 5 weeks. Apart from this though, he seems loads better; the tiredness has gone, and he isn't bruising as badly, smaller bruises only where he has hit himself on something.

He's had two counts in that period (31 about 4 weeks ago and 24 about 2 weeks ago). I am guessing then that he is still in roughly the same range countwise based on the petechiae. Can you get petechiae at higher counts than that? I am also assuming that the fact that he isn't bruising badly means that he isn't lower as well - when he was below 10K before, he always used to get spontaneous blue raised bruises, and he hasn't had any of those.

Does this seem reasonable????? I WISH there was some easier way of getting a count than trawling over to the hospital all the time. This is one of the few occasions when I wish he had blood tests more often - he's off to his grandmas this week and I want to be able to give her a reasonably accurate idea of where he is at countwise.

Thanks, Ali

I have gotten petechiae at 50K and above. For me its more a matter of activities versus counts. I really notice them if I do a lot of walking on cement and even more so if it's intentially at a good clip versus meandering around a store.

Tough call Ali - I would say that if he had petechia, and still continued to bruise the way he was, then his count was down. However, if the bruising is better, then I am also mystified.

I am very fortunate to work where I do, and that I can check Danica whenever I want. Yes, sometimes I am a little of a maniac in that sense, but there have been times when it was a really good thing that I checked her before I was supposed to (such as when she was on the WinRho - I checked her before I was supposed to, and it showed that her count went down, not up).

I think that it would not be unreasonable for you to check before Dougie goes away. Not only for your sake, but for Grandma's sake.

Darn this ITP - it really puts a damper on the lifestyles of these kids.

im at 218 right now and i still have some petichia. itp definitely puts a damper on us kids. i wanna go out and ride my bike but my mom thinks ill kill my self, im seein the hemo tues lets see what he has to say.

Ali,
You can definitely get petechiae at higher counts. Tim does when he's in remission. The ped says that with ITP, even when your platelets are at a normal level, they tend to be dysfunctional, thus the bruises and petechiae with normal counts. With Tim, when he got it at normal counts, it would not be as dark (redish rather than deep purple), and it would fade very quickly as opposed to sticking around for days. Of course now, he can be at 1k and not have any evidence. His ITP has definitely changed in the last year and a half in that he bleeds more easily, doesn't really bruise or get the petechiae very much, and of course had become refractive. I just wonder what happened in his body to bring that change after having ITP for five years.

Thanks for the replies guys. I am going to tell his Grandma 30-40K I think to be on the safe side - because by the sounds of your replies, he could be getting them at any count. He's got an appointment in Manchester next Monday so will find out properly then.

Ian - Dougie's haematologist lets him ride his bike at 20K and above as long as he wears a helmet and he is just cycling on the road. And when he is above 30K he is allowed down to the BMX track but he wears elbow and knee pads as well as the helmet and he isn't allowed to jump. Just ordinary sensible stuff really. He does sometimes bruise badly when he comes off, but its just a bruise at the end of the day. I let him make the decision about whether the bruising is worth the activity. Same as when he went sledging after Christmas. So ask your doctor his opinion when you see him, maybe your mum is being ultra cautious. Its very difficult when your kid gets ITP because you want to wrap them in cotton wool. Don't worry though, she will get bored of you sitting round the house playing computer games and watching TV very soon..........I think I can guarantee it!!

Ali

ya im waiting for the doctors input. jumping is half the fun

Dougie would agree with you about the jumps, but going is still better than not....

ya. well anyhting is better then moms plan... bubble wrap lol

I have a lot of sympathy with your mum Ian! I think that we all did the bubble wrap thing a bit at the beginning, but eventually you calm down and realise that your kid still needs a life.

If it helps, Dougie's haematologist lets him play soccer at counts under 20K as long as it is supervised on grass. And above 30K he does pretty much everything other than head the ball in soccer and jump at the track.

His haematologist said something ages ago that I find useful, which is to think of ITP as a risk factor rather than an illness as such. So it is like if you have fair skin, you are going to burn easier in the sun and you need a high SPF cream. You need to think about things you can do to mitigate ITP risk rather than necessarily stopping doing the things you love. You only need about 50K to do anything - the rest of us just have a surplus of platelets. And the risk will be different depending on whether you bleed easy or not - you need to find out yourself what you can do safely. Dougie tends not to have bleeding problems even with counts of 1K.

Hope you sort out some satisfactory compromise with your mum and the doctor anyway.

Ali

Donna,

I thought when you had itp, the platelets you had were supposed to work better not worse???? I am sure that I have been told this by the doctor, and that is why they don't worry so much about low counts in ITP as opposed to from other reasons. On the other hand, Dougie does seem to be getting symptoms at much higher counts than he used to do, so I don't know!!!! He is only getting them on his legs. Its annoying if you can get them at pretty normal levels, because if so, I won't know how to guess Dougie's count.

Ali

Ali,
Yeah, my son's uncle calls them sticky robust platelets. He really goes on and on about that. They are generally bigger and stickier because they are all new when you are really low. But when your counts are higher they aren't all new and thus robust. They tend to clot well, the ones they have, but that doesn't mean they aren't dysfunctional. He didn't say it was true of all ITP, just some.

For those of you who are interested, here are two articles about platelet function and ITP:

www3.interscience.wiley.com/journal/121368420/abstract?CRETRY=1&SRETRY=0

bloodjournal.hematologylibrary.org/cgi/content/abstract/58/2/326?ck=nck

hi Ali.liam has his blood test today and his count is at 25k ,i also told his heamo that he has been getting alot of petichea and little rashes all over,petichea on liam is very unusual,even when his count is below 10k,, so i cannot tell by this if his count is up or down,all the best Jenny