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Diagnoses changed to Aplastic Anemia

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8 years 1 month ago #60270 by
Diagnoses changed to Aplastic Anemia was created by
My 16 year old daughter, adopted from China at age 2 in 2001 was diagnosed with ITP in 2005. Then it changed to pancytopenia around 2010. No interventions indicated other than to monitor blood tests. My world changed on Thursday when after 6 weekly trips to University of Louisville/Norton Children's Hospital for tests, the Pediatric Hemotologist/Oncologists changed the diagnosis to Aplastic Anemia. They said it could have been that all along.

No medical intervention yet. Our next trip to Louisville KY (2 hours from home) will be in 8 weeks, which will be our new normal.

Of course, daughter has no known biological relatives. If any other parent is on the journey with a child with Aplastic Anemia diagnosis, I would be grateful to connect. If I need to change support groups, I will....pointing me toward an Aplastic Anemia group would be appreciated.

Eva in Kentucky
  • 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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8 years 1 month ago #60271 by Sandi
Replied by Sandi on topic Diagnoses changed to Aplastic Anemia
Eva:
I'm sorry to hear this. In all the years I've been here, I only remember two children who ended up with an Aplastic Anemia diagnosis. There probably won't be anyone here who can help you. If I come across any forums in that area, I'll let you know.
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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 1 month ago #60272 by mrsb04
Replied by mrsb04 on topic Diagnoses changed to Aplastic Anemia
Eva,
My thoughts are with you. The UK Aplastic Anaemia Trust www.theaat.org.uk looks very informative. I don't know if you will be able to access it outside the UK though.

In case you can't its useful links page it directs to these American Sites, www.mds-foundation.org & www.aamds.org .
Both of which are equally informative. Of course you may have come across them already
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8 years 1 month ago #60273 by Margaret k
Replied by Margaret k on topic Diagnoses changed to Aplastic Anemia
Hello Eva,
I had pancytopenia for a few months in 2015 so I know what it feels like to be contemplating what seems to be aplastic anemia, however there is good news that Eltrombopag( Promacta) has been found to be effective in the treatment of aplastic anemia, causing a rise not only in platelets but in red cells and neutrophils in a number of patients . Since I have been on eltrombopag for 18 months , starting at 75 mg daily my red cells and neutrophils have become normal and my platelet count has increased greatly. The platelet count was the slowest to rise of all 3 but is now 168 and my dosage is being gradually reduced. If you trawl the web for ' aplastic anemia and eltrombopag ' you will find a relevant academic article .
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