Joining ITP register.

Hi again,

Just wondering if anybody has recently been asked to join the ITP register in UK for children with ITP. I was wondering if anyone knew the consultant who is running it DR John Grainger Manchester childrens hospital.

All the best,
Nadia.

Hi NAdia

John Grainger is the doctor Dougie sees most of the time in Manchester. I think he is also the paediatric advistor to the ITP Support Association. Very calm and reassuring bloke - really believes in only treating symptoms, not counts, regardless of how low they are. I don't think he would have ever treated Dougie, so he has been quite useful when Leighton Hospital gets jumpy and starts wanting to prescribe steroids.

I think that Dougie is on this register too - I seem to remember signing something when he had his bone marrow test back in September.

Hope that Zac is improving - how is his count at the moment?

Ali

Hi Ali,

Zacs last bloods was 96 I was on such a high but dr not happy he says that they are going up to slow I think Zac is his only itp patient because at his last consultation he told us he had had another boy older than Zac with low platelets but his count went back up straight away and he has never mentioned any other patients before to us. He keeps telling us that if they fall below 30 we may have to do something but haven't got there yet. Zacs petichae quite bad at moment though.
Hows things at you end!

Take care,

Nadia x.

Hi Nadia

According the the dr that Dougie sees at Leighton Hospital, your average district hospital only sees 1 or 2 cases of ITP each year. So its probably not surprising that Zac is the only one at Hartlepool. i am quite surprised that they haven't sent him to see the regional specialist yet though - unless that is Hartlepool???? I think that I remember Dr Grainger saying that he had about 200 ITP paediatric patients in the north west - that would only be the ones that had it longer than about 6 months.

Also, according to another Dr we saw in Manchester, going up gradually is ok as long as you stay up. He seemed to think that Dougie was quite unusual in that his counts keep going up and down, but looking at this forum, that seems to be quite common. If Zac ever gets below 30 but has no worrying bleeding, it might be a good idea to get your doctor to call Dr Grainger before he treats, because I get the impression that his advice would be not to treat.

Dougie is fine. He has a few petechiae and a few small bruises, but nothing much - maybe his count is 40-50, I don't know. He seems to be hanging around between 30 and 50 at the moment with the occasional dip into the teens or twenties. Its not causing him a problem. When we last saw Dr Grainger he said that he could do pretty much anything he wanted if he had a count of above 30 barring boxing and rugby! I've booked him on to a watersports adventure holiday this summer with his friend. When you said that Zac wore a sports band with medical id on it, I thought it was a good idea and got Dougie one which he wears. However that is pretty much his only concession to the condition. He only goes to the drs once every 3 months, although I take him into Leighton for a test in between times if I think his count is very low - we haven't been for a while.

Good luck with Zacs next count, Ali