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Questions Need Guidance

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7 years 3 months ago #63710 by JoeS12
Questions Need Guidance was created by JoeS12
Six weeks ago my grandson who is turning 15 and an avid Athlete who has been healthy all of his life was taken to Children's national Hospital in DC near where he lives because he had a nose bleed that would not stop. They determined that his Platelet count was 7,000. He was given a transfusion and his count went to 300,000. After several weeks it slowly dropped to 68,000 and yesterday he had a second transfusion. They tested his blood for all kinds of diseases and his white and red blood cell count is normal. His parents are frantic since no one has provided a diagnosis. They do not know what to do next. Any recommendations or doctors in the Washington DC Bethesda Maryland area are appreciated.
Thanks
  • 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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7 years 3 months ago - 7 years 3 months ago #63711 by Sandi
Replied by Sandi on topic Questions Need Guidance
Hi. It's possible that your grandson has ITP. ITP is a diagnosis of exclusion, meaning that they rule other causes of low platelets first, after that, the diagnosis is usually ITP.

Do you know what the 'transfusion' was? Does IVIG sound familiar or was it a platelet transfusion? I find it hard to believe that no one knows what to do (I believe you, but doctors should know). Does he have a hematologist?
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7 years 3 months ago #63717 by JoeS12
Replied by JoeS12 on topic Questions Need Guidance
Sandi,
Thanks for the quick reply. I should have made it clear that my grandson's parents were not given any instructions as to what to do next by the Hematologist at the hospital. I had hoped that the doctor would have provided a course of action so they could reach a diagnosis. I was sure relieved to find your PDSA web site which is excellent. I was able to provide my son with information including the fact that it may be ITP which we never heard of. We need any suggestions you can provide on Pediatric Hematologists in the Washington DC and Maryland area.
  • 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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7 years 3 months ago #63718 by Sandi
Replied by Sandi on topic Questions Need Guidance
Sometimes ITP is transient which is why they might be hesitating on a diagnosis. If it's acute, it's called thrombocytopenia. If it's chronic, the diagnosis would be ITP. Thrombocytopenia or ITP can be triggered by an illness, medication or a vaccine. Acute cases can take time to resolve.

I'll tell you right now that there are good Hematologists and some not so good ones. I don't think it would jeopardize your grandson's life in any way, but some of them jump the gun and suggest heavy treatments when it's not needed or not time for that yet. Do your research and try not to worry. ITP is generally manageable and symptoms matter more than actual counts.

This may help you find a doctor. www.pdsa.org/resources/find-an-itp-doctor.html
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7 years 1 month ago #64364 by maria3132
Replied by maria3132 on topic Questions Need Guidance
Hi Joe,
If you are still reading this, how is your grandson doing now? I am surprised that they didn't give you a diagnosis at Children's. We came through emergency there when the first symptoms got worrisome enough for my son, and the hematology team came to see us and talk to us about the diagnosis. We have now seen 6 practitioners, most of whom seem excellent. Feel free to PM me if you'd like.
Hope your grandson is doing better.
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