Immune Thrombocytopenia Purpura (ITP): What helps?

Hi Colleen,
Thanks! Yes I have a treatment plan. Just wondering about others

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!

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
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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?

Hi @Merhant700,
I have just read your post, my Husband Alex also has ITP, with no reason! He has had it for three years, he is on Avatrombobag 20mg, and I find these so erratic, we still have not found a dose that keeps Alex within a stable range, this has been going on since June. (three Platelet transfusions later) still erratic readings, can I ask how you found getting to a stable level with this medicine. Many Thanks
Jan Green

Naiviv, my son went through Prednisone, IVIG, Rituxan and none of those offered anything beyond a few weeks. He is now taking Promacta and that has worked. I hope you find something that helps you

I was diagnosed in 2017. What helps me most with living with TTp is to find a support group or family members to discuss fears, treatments, labs results and day to day conversations to ease the unknowing. I juice, eat plenty of vegetables and fruits. I also take multivitamins, iron, Omega 3 fish oil and eat plenty of salmon and chicken. Will occasionally eat a steak for the iron. I also walk and exercise and lastly, I pray for complete healing. TTP is a rare blood disorder and you have to help your blood to stay as healthy as possible.

It can be scary….but your not alone.

My latest lab results showed that my Adams 13 had droped and may have to start Rituxan. 8 rounds of Rixtuxan usually helps my numbers stabilized for at least a year. I usually can tell when my Adams 13 drop, I get really fatigued, and loose motivations, like cooking, reading and sometimes TV! Just know, your not alone on this journey. This is a great support group, that gathers people with Ttp.

Is TTP the same as ITP please?

Hi @apb. TTP and ITP are both blood disorders in which there can be potential clotting issues. But they are not the same disease as there are differences between them.
I found two good articles which will help to explain the difference between them.

Thrombotic thrombocytopenic purpura (TTP) is a rare disorder that affects your blood’s tendency to clot. In this disease, tiny clots form throughout your body
https://www.healthline.com/health/thrombotic-thrombocytopenic-purpura
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ITP, or immune thrombocytopenia, is a blood clotting disorder due to a low amount of platelets
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
I hope this is helpful for you.

Hi Lori
This is very helpful thank you.
Best wishes
Apb