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Old Tue Apr 11, 2017, 10:20 PM
worriedmama worriedmama is offline
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Join Date: Apr 2017
Location: Austin, TX
Posts: 21
Medically Complicated Toddler

Hi there,

I've learned so much from this forum! Thank you for all who post and share.

I could use some help with my 3.5 year old daughter. For nearly two years, her hemoglobin has been low, and these days, it stays around 9.6 (RBC 3.48) and her neutrophils range from 1.2 to 1.5. Platelets have held steady and retics too (.8%, .030 absolute). She's has some unexplained low grade fevers and random night sweats. Her bone marrow biopsy when she was 3 showed hypocellular marrow at 70% (9.4% hematogones and normal chromosomes.

In addition to the normocytic/normochromic anemia that we have yet to find a cause for, she's got muscle weakness that also defies an explanation despite genetic testing. We're not sure if the myopathy is related to the anemia or not. Her carnitine was low and she's responded well to treatment, but the geneticist doesn't think that she has a metabolic disorder.

Any thoughts on this? Her hematologist wants to repeat the bone marrow biopsy to see if there have been any changes 8 months later--does this seem like a prudent course of action? I feel so torn about it.

I'm so open to any feedback, especially since our team of specialists is stumped.

THANKS SO MUCH!
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