Discussion Forums > Thalassemia Major

Choices

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nwalsh528:

--- Quote from: SamanthaDawn on October 04, 2012, 07:18:05 PM ---She would get her transplant from cincinatti childrens hospital. But I was told there was no cure persay

--- End quote ---
Does your daughter have another biological sibling who you know is a perfect match for a BMT?
Nicole

nwalsh528:
The Current Standard of Care is proper transfusions (to maintain hemoglobin above 9 - 10) and proper chelation. There are regular tests (bloodwork) and annual tests (ie. Ferriscan, endocrine workups, etc). also.

If you do not have the 2012 Current Standards of Care, you can print them from the Oakland (CA) Children's Hospital or request a copy from Eileen Scott at Cooley's Anemia Foundation.
Nicole

nwalsh528:
With regards to hydroxyurea, I know this is a med. that folks with sickle cell often see results with.
I only know of one or two people who have had positive results with hydroxyurea who had thal MAJOR. By this I mean they were able to spread their transfusions out to maybe 5 weeks instead of 3. It is not a cure for thal major!
In addition, the hematologist will need to see if the child is making feta hemoglobin.
One more thing, I believe you need to be willing to allow your child's hemoglobin to fall well belong recommended ranges to see if the hydroxyurea will work. (Personally, I would not be doing this experiment on a 16 month old child who can receive regular transfusions.)  The friends of mine who did do a trial of hydroxyurea had children between 4 and 7 and needed to have their child's hemoglobin fall far below the 9-10 threshold...
Nicole

SamanthaDawn:
After letting her fall below a 7 and the hydroxyurea not helping 6 months later we have decided to go forward with the transplant. she has a perfect sibling match. thoughts?

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