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TOPIC: My just turned 10 year old daughter diagnosed with ITP

My just turned 10 year old daughter diagnosed with ITP 3 weeks 4 days ago #68631

  • raj369459
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My 10 year old daughter has been diagnosed with ITP in this Jan 2020. Her platelet count is not going more than 2000. She spent 14 days in hospital with none of the treatments working. The hematologist tried IVIG, but it had reverse effect and her antibodies started to attack red blood cells. Then they gave prednisone for 5 days but not much help from this either. Later they changed to Promacta 50 mg and sent home saying her platelets should be back up within 2 weeks. After 2 weeks when she didn't respond to Promacta, they increased to 75 mg since 4 days. Her platelet counts are still <2K. Yesterday she had internal bleeding and started vomiting blood from her mouth. When we took her to ER, they noticed bleeding in her brain, so she is in ICU right now. The hematologist gave her several platelet transfusions which seem to work as her platelets increased to 128K. However, within 6 hours, they came down to 61K. So they started platelets transfusions again. Today they are talking of giving her Rituximab for 4 weeks and if this doesn't help they are going to remove her spleen.
Does anyone had this experience with your child? I know the side effects of Rituximab, but we are reluctant for splenectomy given her tender age. Can you please share your experiences with these two options?

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My just turned 10 year old daughter diagnosed with ITP 3 weeks 3 days ago #68640

  • JJ
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It seems to me that where brain bleeds are involved you have to do whatever it takes to get her count up, and in such circumstances even splenectomy should be considered. Here's hoping the rituximab works and the splenectomy isn't necessary.
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My just turned 10 year old daughter diagnosed with ITP 3 weeks 3 days ago #68642

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Thank you JJ! They just started Rituximab today and hope it works. Any idea how long it takes for Rituximab to work on platelets? The hematologist said it may take 2 to 3 weeks for it to start kicking.

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My just turned 10 year old daughter diagnosed with ITP 3 weeks 1 day ago #68656

  • JJ
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It can work straight away or it can work several weeks after the last dose.
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My just turned 10 year old daughter diagnosed with ITP 2 weeks 1 day ago #68706

  • Hal9000
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raj369459, about the IVIG. Was that actually 'WinRho' and not IVIG? I ask because a possible side effect of WinRho is attacking red blood cells. Either way, is the immune system still attacking red blood cells?

From what I've seen around here with adults, sometimes Rituxan can work when neither IVIG or steroids are working. It is a bit rare but it does happen. Also, those that have taken steroids with Rituxan (and don't respond to IVIG alone or steroids alone) seem to have a bit better odds of success with the combination.

A more recent Promacta treatment regimen (not FDA or manufacturer approved) is to go to an even higher dose, as much as 150mg. Some folks appear to need a dose higher than 75mg.

Oh, and another recent advent around here. User 'Carcamoc10' took 75mg of Promacta all through Rituxan treatments. Then upped Promacta dose above 75mg after Rituxan. After a very rocky platelet count road, she appears to now be in full remission.

Again for adults, what often has happened around here is to go on Nplate when Promacta 75mg fails. Nplate doses run from '1' to '10'. Usually an Nplate dose higher than 6 or so is needed when Promacta hasn't worked. It is pretty rare for someone to not respond to an Nplate 10 dose.

You might want to go to the PDSA search page and look through 'maria3132' comments. Her son had ITP. She did a lot of research on children with ITP. As I recall, odd as it sounds, not responding can often imply a good outcome.

Hope this helps.
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My just turned 10 year old daughter diagnosed with ITP 4 days 14 hours ago #68818

  • raj369459
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Thank you Hal! My daughter came back home after more than 2 weeks in hospital. She had 3 doses of Rituxan and tomorrow she has the final dose. She is on 35 mg of Prednisone (2 times a day), 100 mg of Promacta (one time daily). Along with this they gave her Protonix and Carafate to rule out chances of irritation in her stomach due to these heavy doses. Her platelet counts started showing some improvement last week - from 45 to 63 to 120 in 3 days.

However, since she started these heavy doses of steroids and Promacta, she lost appetite and hardly eats anything and whenever she eats she vomits. We spoke to her doctor and asked if she can wean down on any of these two medicines and she reduced Prednisone to 30 mg from 35 mg. Even this seems not helping her as she is still getting dehydrated. I will ask her Gastroenterologist and hematologist tomorrow if they can do some more blood tests to check on her Pancreas and Liver.

Do you know if steroids and Promacta have these side effects? I am not sure what would be the preferred treatment option for my daughter. I meant if dehydration is ok as long as she maintains her platelet counts to reasonable level (>100)?

Thanks,
Raj

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My just turned 10 year old daughter diagnosed with ITP 4 days 13 hours ago #68820

  • JJ
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Steroids cause the body to have excess glucose, to almost be diabetic. This causes a lot of peeing and so causes dehydration.

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My just turned 10 year old daughter diagnosed with ITP 4 days 13 hours ago #68822

  • mrsb04
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If I had a child on that much Pred I'd be pushing to get it reduced and tapered off it as quickly as possible, horror horrid drug

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