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Immune Thrombocytopenia Purpura (ITP): What helps?

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (174)
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@schielekate

Good morning,
I decided to find a support group or some way I could find more information about the condition ITP my ten-year-old child was diagnosed with at the beginning of the summer back in June. So far, her platelet count has been at its highest at a 22 after an infusion, but the last two blood draws she is at a 2. The last blood draw at a 2 was after steroids and we have started her on the medication Promacta. I am worried about the lack of positive response to medications and the progression of this condition for her. She is worried to be at school and the meds have been a struggle. Asking for advice and I would like to get insight on living with the diagnosis on a daily for those of you experiencing ITP. Thank you!

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Replies to "Good morning, I decided to find a support group or some way I could find more..."
Lori, Volunteer Mentor | @loribmt | Sep 12, 2023

Welcome to Mayo Connect, @schielekate. Oh my goodness, this must be really scary for your daughter (and you!) As a mom, I can understand how concerned you must be to not see any improvement in her platelet level. With platelets so low it’s not easy protecting a 10 year old while she’s at school.

While you’re waiting for other members with ITP to respond I found several articles on ITP and the good news is that children often grow out of this. But in the meantime that’s not much comfort when your little girl is sick. I’m sure these meds are no fun to take either. Prednisone is a wonder drug but it can have its own share of side effects.
If you haven’t seen them already, here are some articles in ITP:
Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
~~~~~
Standford Medicine
https://www.stanfordchildrens.org/en/topic/default?id=immune-idiopathic-thrombocytopenia-purpura-90-P02315
~Platelet disorder Support Association. https://www.pdsa.org/about-itp/living-with-itp.html

Is your daughter seeing a hematologist, a doctor who specializes in blood disorders?

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