Pediatric ITP

My daughter was diagnosed with ITP in February of this year. She has been living with a count of under 10 since then. She has had 2 different specialists trying to treat her and so far nothing is working. IVIG will temporarily get her number up a little, maybe for a week or 2 at most, and she has never been over 50 since she was diagnosed and that includes even with treatments being done. She has had steroids, IVIG, rituximab,win Rho, and now she is in a drug trial study for a drug named eltrombopeg. She has been hospitalized at least 10 times already. She gets weekly blood tests done. Her count has been down to 1. He count as of last wednesday is 5. We are trying to live a normal life but it is so very hard. Her doctors are a 2 and a half hours drive away from our house and we have to drive there once a week. This has been such a huge battle and who knows how much longer this is going to last. Can anyone relate???

Wow, thats an awful lot of treatments in a short time

I can relate We treated like crazy at first, over 10 IVIG tries, Win-Rho twice, steroids more times than can count. Hospitalized many times, almost 3 straight weeks at first, after BMB released and treatments stopped with a couple failed attempts after. Highest ever 35 after IVIG AND Win-Rho, back to 11 further dropping 2 days later. His hema is 2 hours away. We were going twice a week, but my ped and hema worked together and we started seeing ped, who would call hema and they together made game plans and we only go to hema couple times a year now He has had ITP since July of 2011 and he is now hanging around 10. (July-May below 3, usually below 1)

I hope things start looking up soon..Good luck

We've been dealing with this since January of this year. Good luck with everything, I know its an exhausting roller coaster.