Introduction

Hello, My name is Brook and I'm new to the dicussion groups so I am just introducing myself. My son, Brady, was diagnosed 6/8/11 at 2 years old. I think he had ITP well before that but didn't have "obvious" signs, but looking back it is clear something was going on. Currently Brady has been on Prednisone since December of last year. He is at 1MG liquid every other day. Prior to that he had Win Rho and IVIG infusions. He jumped after those treaments and then steadily declined. We recently started going to a Homeopath and have been on a remedy for about 4 weeks now. His platelets are currently at 25,000 and the levels vary dramatically. I am hoping to get him off these steroids and maintain a safe level without venturing into Rituxan for now.

I discovered PDSA about 6 months ago and it has been a great resource for me. I am not sure why it took me so long to try the discussion groups. ITP can be a lonely road. I have good support around me but I think it is time to reach out to other parents who are in the similar circumstances. I am here to talk, listen and offer support. I am grateful for PDSA and am excited to participate in a local Pump it up for Platelets walk!!

Hello and welcome!! This is an awesome place for support and answers happy you joined!! My son has had ITP since 7/15/11..He was 17 months old. We also did win-rho, IVIG and steroids however NONE of them worked for him. We used prednisone as a rescue treatment when his mouth would bleed. He has been under 10 this entire journey!! He is now 2.5 and has had it for 13 months, sounds like we have alot in common I hope your little guy is doing well!!

Thank you crystal lee for your response, I appreciate the support!! I am sorry that your little one has ITP, and to be diagnosed at such a young age. I hope he is doing well, I can imagine some of the hurdles you had to face. I look foward to talking with you and others in this great froum!!

Hang in there!!

hiii this is Ryan from canada, recently i have joined my college. i like to meet and share my idea with everyone.

Welcome, it can be a lonely road. To date, I haven't met another Child with it. I know they see our doctor but haven't actually met another child or parent to discuss. My Daughter was diagnosed 2.5 years ago. She was 3.5 and now is 6. We have done it all. Prednisone, WinRho, IVIG and we decided to finally do a trial study for Eltrombopag. She has been on it over a year now and has done well. NO side effects and numbers up and down. We most recently had numbers too high which was equally as scary. Overall she has been in the 100K-200K for the last 3-4 months which is nice.

If you have questions don't hesitate to ask. Or just vent....

Jennifer