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Newly diagnosed questions.

4 years 9 months ago #67514 by Klilly
Newly diagnosed questions. was created by Klilly
My son is 3 years old. He has recently been diagnosed with ITP. When it was discovered he was treated in the hospital with IVIG. Since then he has seen a pediatric hematologist. She states there is not a treatment for ITP. He will most likely grow out of it in a year or so, but for now just watch for major bleeding.
I can accept that. However, these bruises have gotten much worse. Like the size of a dollar, And he has petechiae all over him. As of last night he has developed red “blister” like spots on his tonsils. He seen his ENT doctor today and he confirmed it was from ITP. He told me to call the hematologist, which I did. She again stated there was nothing she could do. Is this normal?? Should I worry? I just feel so helpless for my little boy.

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4 years 9 months ago #67516 by Carcamoc10
Replied by Carcamoc10 on topic Newly diagnosed questions.
First of all, I’m so sorry that you’re having to go through this with your little one. I was diagnosed last December at the age of 27, so I don’t have any experience with pediatric ITP but I wanted to chime in because it sounds really strange that your child’s hematologist says there are no treatments for ITP...could she be actually stating there is no cure..? Because there are plenty of treatments & medications out there! I’m on a medication called Promacta that is approved for use in ages 1 and up. It basically stimulates the bone marrow to produce significantly more platelets than the body destroys. That’s one thing just off the top of my head. Hopefully someone with experience handling their little one’s ITP can chime in with more info. Also, it worries me that you called the hematologist because your child’s symptoms are getting worse and she didn’t have you guys come in to have labs done right away & instead just told you there was nothing she could do. That doesn’t sound very good, would you be able to try another pediatric hematologist? I definitely don’t think you are wrong for worrying, I wish you good luck!

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
4 years 9 months ago - 4 years 9 months ago #67529 by Hal9000
Replied by Hal9000 on topic Newly diagnosed questions.
Klilly, AFAIK there is a varying level from doctor to doctor of when treatment for children is needed. This is because most children go into remission after a (short) period of time without treatment. Often the threshold for treatment is active bleeding. The typical first treatment to try and raise counts and stop bleeding is IVIG. If that doesn't work then perhaps steroids. Again, doctor dependent. Then if that doesn't work, either Promacta or Nplate. Those drugs stimulate the bone to produce more platelets.

Hope this helps.

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