Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: zahra on March 30, 2018, 03:01:25 AM



Title: After Transplant
Post by: zahra on March 30, 2018, 03:01:25 AM
Hi Everyone,
My son is now more than a year post transplant.
We have been lucky to have no GVHD and to get 100%
donor cells.
I wonder where all other transplant patients go.
My son has not needed a transfusion for a year now but his Hb stays between 8 and 9. Is this normal?
His donor was his thal minor brother with a Hb of 12.4.
At first they told me it was maybe bc of immune and hence bone marrow supression.  He has been off those for 3 months now.
Last test his ferritin increased by almost 200. I know it could have risen due to infection but worry about it being increased gut absorption bc of his low Hb like in thalassemia intermedia.
How long does it take for Hb to go up after stopping all myelosurpression?
Zahra


Title: Re: After Transplant
Post by: Andy Battaglia on April 07, 2018, 01:35:20 PM
The curethalassemia.org FAQ page states that the expected Hb after a BMT from a minor should be in the 10-12 range.

Quote

After a successful BMT,the child will be thalassemia minor/trait carrier?
Yes,the child will be a thalassemia minor carrier,with an haemoglobin level around 10-12.

It may be that the immune suppression is still responsible for the low Hb. I would think the final outcome should be an Hb similar to his brother's.


Title: Re: After Transplant
Post by: zahra on April 08, 2018, 11:32:34 PM
Dear Andy,

Thank you for your reply. I hope it is correct and his Hb improves but until then do you think I should restart him on the supplements he was on before transplant?
Like the homeopathic medicines for preventing splenomegaly and wheatgrass and IP6 to prevent complications from prolonged low Hb?

Zahra


Title: Re: After Transplant
Post by: Andy Battaglia on April 14, 2018, 01:45:49 PM
Yes, the supplements may help raise the Hb and the IP6 will help with the remaining iron load. Whatever you give him, add B-12 sublingual tablets to the mix.


Title: Re: After Transplant
Post by: kaleem on October 19, 2018, 05:51:10 AM
We are planning for BMT for our 1 year and 10 months old. Is it possible to ask where BMT for your child was conducted?


Title: Re: After Transplant
Post by: zahra on November 04, 2018, 02:07:42 AM
Johns Hopkins Baltimore, Maryland, USA


Title: Re: After Transplant
Post by: kaleem on June 10, 2019, 09:06:26 AM
We performed BMT of my kid at The Aga Khan University Hospital Karachi Pakistan... His is again dependent on blood transfusion unfortunately..