Did anyone ever need a blood transfussion due to low hemoglobin levels....or does anyone know what level a moyamoya patient should be at.   My son is 3 and has been feeling miserable for weeks he just had his blood work done and his hemolglobin was only 7.9 I am so worried because they are not transfussion.....He is on a immune surpressant cause he had a liver transplant which they are stopping because they believe it is surpressing his bone marrow to much.    Any thoughts would be great Thanks....So worried about my baby boy!!  He had moyamoya surgery by Dr Scott at 5 months old!!!

i have had 6 units of blood since i was diagnosed in 08
cause of menstral bleeding first 4 were in feb 09 and next 2 were after my  Hysectrectomy and didnt have any problems with either one my hemoglobin the first time was 6.3 and second time was 7.5 but felt so much better after them hope this helps a little bit

Hi Mandy,
I know of a number or adults with MM who have had low iron levels. It seems to be women and associated with heavy menstrual bleeding. I needed to have a blood transfusion two weeks prior to my scheduled surgeries for Moyamoya. Dr. Steinberg ordered that blood be on-hand during the surgeries, though none was needed and I came through just fine. Have you considered giving a call to Dr. Scott? He may have some suggestions for you. I can only imagine how difficult all of this must be for the parent of a small child. My thoughts and prayers are with you and your child.
Kim

Mandy  ~  I hope things go well for you and your son. Ditto to calling Dr. Scott.
I too am on iron tablets ~ I have been low in iron most of my life (who knows if that's mm or another reason). I wonder now if heavy menstrual cycles is more common in mm women?  Certainly your son has a wide variety of things to contend with and all my love and support go out to you all.
Linda

Hi Mandy,

My daughter (the MM patient) has had problems with her iron levels the last couple of years.  She's 6 years post-op, and a transfusion hasn't been necessary, as iron supplements have served to return her levels to a normal range.

Interestingly enough, I had Hemolytic Anemia about 9 years ago.  My hemoglobin was at 5.8, and I definitely needed a transfusion.  I'm not a MM patient, but believe there must be a connection somewhere, even if just a familial one.

I agree with checking with Dr. Scott about your son.  Good luck, and please keep us posted!

Warmly,
Jill