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Old Sat May 28, 2016, 03:46 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Lindsayt,

Let me preface by saying I am not a doctor. I just have opinions and experiences that I am happy to share as another data point.

First, the nosebleeds... Some kids always get nosebleeds, and they are nothing to worry about, although they usually occur at the most inopportune times and can be pretty alarming! What has worked for my daughter is to use a saline spray (like Ocean Mist) in the morning and evening, depending on when your son gets them.

If your son's hematologist said to stop the iron, I would stop the iron. Iron can be toxic in large does. Many foods are fortified with iron like cereal, bread, etc. So unless you had iron testing done or you had a bone marrow biopsy done that showed low/absent iron stores, I would not blindly supplement with iron! Iron overload can cause a host of other problems. So don't supplement with iron without a diagnosis. Again, this is just my opinion.

Since your son's hematologist is not concerned at this point and is ordering a follow-up blood test at 6 months (vs 1 week or 1 month), I would take this as a good sign that he doesn't think something is seriously wrong. At the time of his next blood test, if your son is sick or was sick in the last week or two, I would delay the blood test. Otherwise you may see results that will causes you unnecessary panic! If you stop the iron supplementation and your son becomes symptomatic or his HGB is low next blood test, consult with the hematologist to root cause the source of his anemia.

Wishing you and your son well!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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