Timothy 31k

They were a bit over confident today. The nurse practitioner saw him and came back after consulting with the hemonc. They did the CBC, but he's not symptomatic so they assumed he'd be high again. They said come back for labs next week and even mentioned "weaning" him. I didn't say anything 'cause I know Tim and I know he would just let them know by his lab work that weaning was not going to happen (lol). So, we waited longer than usual and i told Tim "they are double checking because your counts are low". Then after some time we found out he is low (last week he was 86, this week 31). So they doubled his dose and changed the plan to see the hemonc next week instead of just coming in for labs (duh). No sweat thoug...we aren't freak'n out. Its just Tim.

They said he was at, about 110mcg last week. Now he's at about 220 mcgs. I don't remember the exact, that's approximate.

Lots of other posts I read seem to mention wild variations in counts on N-Plate - is it common do you know?

Still good though compared to where he was. Heres hoping that next week is better again.

Ali

I'm not sure what the statistics are, but I think I've noticed that here as well.

I think we were pretty lucky to where Caitlin didn't get the wild fluctuations that much, but I have definitely seen these high ups and drastic drops with some of the adults. These were Caitlin's counts when she first started during Phase 1 of the study (16 weeks): 10, 21, 27, 44, 32, 53, 79, 49, 77, 66, 67, 61, 80, 88, 74, 22, 36. During Phase 2 of the study, she had a couple of occasions where she went over 100, with her max being at 135. I remember there being one occasion where she was at 110 one week and then we didn't give the shot that next week, and by the following week she was down to 10.

I wish I had the breakdown of how often they upped her dose, but I think she ended Phase one on .4 mcg and began Phase 2 on .5 mcg because her count was so low with not being on anything "in between" phases and she had trouble with bleeding. She ended the study at .7 mcg and had been at that dose for 3-4 months. (I don't remember the exact dose when it came to the "powder", but once it was mixed with saline, we had to draw out .5 or whatever the dose was for that week.)

I think I recall that Jaxen went all the way to the maximum dose, but never really got above 50 except for a few occasions, but the drug kept him from being a bleeder. I believe he is on the extended study that was for 3 years starting in Jan. 2010.

It would be nice to see how many kids we actually have on Nplate. I know at the clinic where Caitlin attends, there are still only 6 kids total on the drug. Caitlin is the only one who has dropped out of the study.