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  #1  
Old Fri Oct 27, 2017, 07:09 PM
worriedmama worriedmama is offline
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Location: Austin, TX
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Anyone with similar experience?

Hi all,

So grateful to have this group! My 4 year old has unexplained normocytic/normochromic anemia and her hemoglobin averages around 9.5. She has periodic neutropenia (average seems to be 1200, sometimes dips to 800.) Retics .5%. Normal platelets. Normal copper and most other studies including FISH and chromosomes. Weak muscles which may or may not be related to her condition. She has much fatigue, low grade temps.

We recently had her latest bone marrow biopsy slides reviewed by a different institution and this is what we got back:

"The mild megaloblastic changes of erythroid precursors are of uncertain significance, particularly given her red blood cells in the blood stream are of a normal size. The rest of the cells look normal. She has had studies performed here and at her home institution for disorders that can lead to megaloblastic changes (e.g., vitamin B12 levels) but these have been normal. I do suspect that the change in the appearance of the erythroid (red cell) precursors and her anemia are related but it is not clear what the underlying cause is yet."

Does anyone have any related experiences or insights?

Thanks!
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  #2  
Old Sat Oct 28, 2017, 12:22 AM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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If I read this right, only her red cells are affected.
I had pure red cell aplasia that fits that description.
There is a genetic version of PRCA called Diamond Blackfan Anemia. It us usually reveals itself by age two, but there are exceptions to all rules in nature.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Sun Oct 29, 2017, 10:57 PM
worriedmama worriedmama is offline
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Location: Austin, TX
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Thanks for the reply! Other than the red cell precursors, everything else looks normal. She has had a few bouts of neutropenia, but the anemia has been chronic since she was one. Negative ADA and her marrow didn't have any red flags for Diamond Blackfan according to the hematologist. I'm hopeful we'll get some answers in the near future! I am grateful for this group.
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Old Mon Oct 30, 2017, 12:24 AM
triumphe64 triumphe64 is offline
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Location: Dallas, Texas
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Just in case you want to find out more about Diamond Blackfan. Here is the site for the foundation.

http://dbafoundation.org/learn-more/

There is also a Facebook group called DBA Family. It has 700 members.
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #5  
Old Tue Oct 31, 2017, 08:44 AM
worriedmama worriedmama is offline
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Location: Austin, TX
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Thanks so much for the support as we get things figured out! Have a Halloween full of treats and no tricks.
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