Quote:
Originally Posted by lizab
I completely understand your concern. My son, who is now 17 has has hypocellular bone marrow (30%) since the age of 14. He has had a history of neutropenia, low RBC, and low iron stores. He has had 8 bone marrow biopsies which show nothing thus far (other than hypocellular marrow). We live in Ohio and his hematologist are at Nationwide Childrens Hospital. We have traveled to NIH and will be traveling to Boston Childrens Hospital next week to see a Doctor that specializes in bone marrow failure.
I have been searching for someone with a similar situation. My son is, for the most part, a healthy thriving teenage boy. This is puzzling to many doctors he has seen thus far.
He is under close watch because his father had leukemia and his brother has non-Hodgkins lymphoma.
Please let me know if there is any specific questions you may have. Prayers to you and your daughter.
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Thank you for responding! I have not encountered another parent with a teenager with this type of condition.
Like your son, my daughter is mostly a healthy teenager. Very active. The only issues we face are reoccurring mouth sores and most recently nosebleeds and pain in both of her hips. There is no history of lymphoma or leukemia; however, my mother died suddenly at 48 and we do not know why (no autopsy).
Her RBC and platelets have been normal but her WBC have been consistently low. I've been trying to do research on my own and the one thing that has stuck out to me is MDS due to her hypocellular bone marrow. We live in Florida and she is being seen at Nemours.
Did his RBC and iron drop over a period of time or was that found with his neutropenia?
Prayers to you and your son as well! Not knowing what is causing this or waiting for answers is the hardest part. I've been checking this board daily and I'm glad to have found you.