Hi
An hour ago, i had a telephone call with a mother who has an eighteen years old son who is thal intermedia. He started taking butyrate shoots in 2001 till now and he is doing fine . His HB level was 6 and after the shots he is 8.5. Every 10 days, he takes the shots for 4 days in a port-a-cath which was planted by the doctor resposible for the trail . Concerning side effects, his mother told me that nothing except that he sometimes gets headaches and sometimes his blood pressure increases.
The good news is that these shots will be oral this summer. She told me that she will be happy for havng the pills because her son (a teeager ) sometimes find no difference between these shots and tx since he is obliged to sit and finish the whole bottle. He even went to atransplant specialist ( who did a BMT to his sister ) and wanted to go through one, but the specialist refused since he is doing fine. Seems that teenagers are difficult to handle when it gets to thal
.
Anyway they are travelling to the states next January to meet the Dr. responsible for the trail.
The good news is that she was the same doctor that i was writing to.
Take care
Manal