Caitlin had a high count (first time ever) earlier this week of 402 (5/3), which was a huge shock to us considering that she has really stayed under 20 for the last 5 months with a few boosts if she had some kind of treatment. She got this count by getting back on Nplate, 4/26, (maximum dose for her weight) after treatment from Rituximab didn't look promising when she received her last dose on 3/10.
Anyways, she had alot of tingling in her arms and legs last week. I am assuming that her count was probably even higher than 402 earlier in the week and I read that that can be a symptom of "high platelets". Anyways, I kind of expected her to be full of energy this week and wanting to try everything out there imaginable. It's been nice outside all week. I signed her up for a private lesson right after we got her count to do some tumbling that she had wanted to learn. She did great that night, but the rest of this week...she has been very, very tired and sleeping alot! I came home each day this week to find her asleep on the couch and I had to wake her up to make sure she had done her homework. She stayed awake long enough to eat dinner and maybe watch tv for a little bit, but was asleep by 8 each night which is rare for her. Fatigue has really never been a big symptom for her. So it makes me curious if there is a possibility that maybe her count is falling pretty quickly? Has anyone had the experience of feeling like you couldn't move after having a great count only to find out it has dropped alot? (I am hopeful that it stays at least in the 200-400 range so that she can get a reduced dosage next week. She was not able to get a shot this week due to the protocol of no shot if the count is over 400.)
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)
Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg
Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...