What next?.....Promacta isn't working

My 4 yr. old son has been living with ITP for a little over 2 yrs. He's count has never been above 5 on it's own or above 38 with IVIG. He's done at least 6 IVIG treatments, with short term raised platelets count (lasts only one week). The last treatment was done with steroids, then 45 days of steroids. There was no change with or without the steroids. We finally got the approval to give him Promacta. He's been on it for 2 months now. All counts are 3's and 2's. The last one this past Friday was 1 and that was with increasing the dosage of 50 mg. My questions is, what's next? I'm getting very scared, because I don't know what's the next step. He's dr. is very optimistic, since he no longer has bleeding and his bruising looks better. My child can't live like this forever and I'm so worried. His Dr. will not discuss any further treatment until the time is necessary. She likes to take it one step at a time. Can someone please share their story, if you've experience the same with your child.

Tammy:

N-Plate is another option. It's similar to Promacta but it is a once weekly shot.

Another valid option is observation only. You might find these articles helpful:

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

Tammy,

Although chronologically 50 y.o. isn't considered childhood anymore, my ITP in 2010 resulted in six weeks of hospitalization because I did not respond to any of the multitude of drugs and IV-IG offered. I don't recall them all, but I do believe my hematologist tried about a dozen, the one I had some success with eventually was WinPro.

It was very traumatic and frustrating, for weeks not responding to attempts to get my platelets up. I'd been swallowing blood from a nose/sinus bleed for several weeks; IV's attached 24/7 (or nearly so), my super-charged mind racing on steroids.

I felt so hopeless, and really thought I'd never "clot" again!

Reading here about all the different experiences and outlooks does help me understand more of the scope and variations in treatments. One thing I've learned is, doctors are more concerned these days with symptoms rather than strict interpretations of platelet counts.

For example, I just assumed anyone with low platelet counts (3,000 5,000 12,000) was hospitalized; that is not necessarily true, one has to take bleeding symptoms and other factors into account.

Read and ask a lot of questions; there are a lot of different experiences related in these threads! But remember you can't worry your son's way to health, so be strong and healthy for him!