Question about levels and treatments

G son has had ITP for 14 months now. He turned three this week. He has had at least 5 different types of treatment. None seem to be working. Sorry to say I can't name them all. Steroids, Nplate ( which we believe caused the blood clot he developed in his brain in May and added Lovenox, blood thinner 2x a day) now 75% desolved, and numerous IVIG's. On average.... 2-3 a month. He is now on iron and a 4 week low dose of Rutuximab. Anyway.... We see that many let their numbers get very low and just deal with it? We feel that maybe his doctors are trying too hard. Is it safe to just wait and see? His levels normally have been anywhere from 3000-60,000. He is in the hospital for overnight stays at least 4-8 days a month. Yet in the hospital he is crazy, silly and just wants to play. Does he really need to be there? We are hoping to meet with Dr and discuss this as we have tried to stay out of it for the most part, put can no longer just sit back. Any input would be appreciated.

Hi. Welcome to the Forum. You might want to read these articles. They are very up to date, informative articles about the management of ITP in children.

www.pdsa.org/forum-sp-534/12-newly-diagnosed/27819-managing-itp-in-children-update-12-4-14.html

That sounds really worrying for you. What was his count when he had the clot?

Hi C Davis, So sorry to hear - I can't imagine how you are dealing with this. My daughter had ITP for 5 month. She had very low numbers, as low as 0 and usually between 1,000-3,000 our Dr did not do anything unless she showed signs of bleeding. This happened a lot so they started with IVIG - did not raise her numbers for long but helped stop the bleeding. Then 3 types of steroids. Bone marrow biopsy because nothing was working and then WINRO. Just when we thought nothing would work, Winro worked. It is a pain, 12 hrs in hospital being connected to an IV. But 'knock on wood' she has been ok and it's been 8 months. Hang in there and know that many children have ITP for longer than 2 year and it just goes away. I tried to give her all organic and limit sugar and stress. I know that's difficult but we do what we can. I hope your little boy gets better soon!