Oh Timothy...

I went to work yesterday at 10 pm and he had about six tiny little petechiae on his arm...very light. I thought, he's dropping, by Monday he'll need to be seen. An hour later, I get a call from my daughter that his gums are bleeding and he's got blood blisters in his conjunctivea...that boy! I worked a 24 hours shift (I'm an in home caregiver for elderly clients) and had two separate clients, with an overnight stay. So I arranged for a friend to take Tim and my daughter in to the hemonc at 5 am (that was the only time he could take them) and wait for me to call and arrange for him to be seen. I call at 8 am (when they open) and go through all the channels explaining just why he needs seen now, not in the afternoon (because they won't order the NPlate after 2pm for some reason) and he was seen (after I causes a telephone scene calling receptionists and nurses, lol). His doctor was paged and he was seen but had to wait because the machine to count his platelets was down. They counted by hand. He was at 44k, which is a "safe" count...but he was already having bleeding symptoms and only one week after his last Nplate. So, he got another shot this week. I think his hemonc might be catching on...maybe?

I have this theory, though its only correlation and not expert opinion. We know that ITP is a function of the immune system, and also there seems to be an element of platelet production dysfunction. Tim is refractory to the immune modulator therapies...all of them so far. He only responds to NPlate-the platelet production drug. I think that the more they withold Nplate from Tim, the more his body has difficulty catching up with the platelet destruction and possibly the production starts to shut down to some extent. Well, I know I can't prove that, and its just a hunch, but that's what it seems to me. His hemonc does not listen to me at all...seems to think I'm an idiot or just ignorant. I'm going to tell him next week that Tim needs the shot every week.

That must have been a bit scary - particularly as there was very little you could do yourself.

I've heard that manual counts can be significantly higher than machine counts because the machines don't count all the larger platelets. It would have been interesting to compare the two approaches. A count in the 40s seems like it would normally be safe for Tim?

Hope you get the doctors sorted out soon anyway

Ali

Yeah I think that's probably accurate, and what we were thinking too. He's never had symptoms that high before, so I think that was the issue.

Did Tim get his Nplate this week? That is awful that he got that many symptoms with a count of 44! Especially blood blisters...that's scary! Too bad his former hematologist couldn't move with ya'll and keep him stable.