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TOPIC: Scarred for relapse

Scarred for relapse 10 months 1 week ago #63429

  • MuiseFamily6
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My 4 year old was diagnosed earlier this month with ITP when she ended up in the hospital with nosebleeds, bruising, and petechiae with a platelet count below 10 and RBC and WBS counts very low. She had IVIG while in the hospital and her platelets went up to 110 before they released her. Yesterday she had her first appointment with the hematologist and although her RBC count is still low (but going up), her platelets were at 524! We are ecstatic but scared. We have now realized that the "strange red dots" she has had off and on for the past 2 years, the strange bruises that have just popped up, and the small nosebleeds she has had the past 2 years, were quite possibly dips in her platelets. So although she is considered in remission, we were told that she was at risk of possibly relapsing. One of her tests from when she was in the hospital came back positive so they are sending her to a rheumatologist too. I will be honest, I am a bad mama and forgot to write down what it was but I do recall them telling me that if it came back positive, she was at risk of other autoimmune disorders (and ITP coming back after remission) and that my husband most likely has it too (he has 2 autoimmune disorders including AHA).

Anyone have any advice on things we can do to help keep her platelets up?

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Scarred for relapse 10 months 1 week ago #63451

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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There really isn't anything you can do to keep platelets up. Your daughter had a great IVIG response, but that treatment usually only lasts a few days or weeks on average. One month of good counts after treatment usually isn't considered to be remission. It is possible that your daughter had acute ITP in which case her counts could stay up.

Is it the ANA that was the positive test for your daughter? Does that ring a bell?

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Scarred for relapse 10 months 6 days ago #63463

  • MuiseFamily6
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We actually finally got the information to log into her online chart and found out that it was ALPS that came back positive. They did say between the previous systems and this positive result that although they considered her episode acute, she was at risk for "relapse" of ITP or even of AHA.

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Scarred for relapse 10 months 6 days ago #63465

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm sorry to hear that.

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