Having problems with message search?
My 6 year old daughter was diagnosed 16 months ago. We used Prednisone and had success with that, but only for a few months. Then, her body stopped responding to it. We tried IVIG, whith only short responses. Then, we tried Rituxan which did nothing for her. All summer, we could not get her platelets above 10,000. They were going to remove her spleen. I was not happy about this so I did my research and found a doctor in Boston who uses 6mp which is a leukemia drug on his Evan's patients. My daughter's doctor agreed to give it a try but did not think that it would work. Well, 2 weeks later she was flying high and doing great ever since. She started the 6mp about 4 months ago. You may want to ask your doctor about this drug. My daughter's platelets are over 200,000 and her hemoglobin and hematocrit both increased to normal ranges.
Hope this helps. Lisa(madison's mom w/ Evans 6 yrs. old)
charleyfritz <ted@...> wrote:
charleyfritz <ted@...> wrote:
I am new to this group. My three year old son, Teddy, is having his first episode in two years.
They have tried two different steroids and IVIG. The prednisone seemed to be working at very
high doses of 150 and then 100. But this week his hemo counts fell from 11.8 to 9.9 not an
esp. bad number but we are wondering what this could mean and what might happen now.
Also what treatments others have had success with.
Thanks in advance for any help you can give,
Rachel
LISA
Access over 1 million songs - Yahoo! Music Unlimited.
Offline 
Send Email