New questions from the boy

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Offline qys81

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New questions from the boy
« on: July 28, 2011, 11:25:40 AM »
1. Last summer, the boy did his last ferrtin check, it takes too long, because there city do not have the hospital that can do that examination. The ferrtin is 1263, he did another test yesterday, the result will come out tomorrow, I will post it asap.
   Based on last check result 1263, the doctor asked the boy use  "desferal 0.5" 2 days a week, she wanted to know if  ferrtin is higher, should the boy use  desferal 20 days a month (according to the doctor, normally should be 20days a month), will the medicine affect the growth of the boy?

2. About  bone marrow transplant, She discussed that with her husband, her husband think that is very risky, he does not want to take the risk, so they do not want to decide right now. They want to know if the child can grow old like others after BMT, will the boy be affected by rejection, and even life threatening?

3. About blood tranfusion and  chelation, the couple also worried about the boy's phychology, and how he should face his classmates in the future; Also, if blood tranfusion a lot, she worried about the quality of the blood. If both side (blood tranfusion and BMT) have risk, how should they balance between them?

4. Is there any new tech or treatment? She said she want to know genic treatment. How does that developed.

Finally she want to thank you all, as you let her and her husband know this is just a chronic like high blood pressure and diabetes. She released a lot. Thank you again.

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Offline Andy Battaglia

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Re: New questions from the boy
« Reply #1 on: July 28, 2011, 10:10:10 PM »
Not transfusing properly will stunt growth and development, so balancing shouldn't even be considered. The Hb needs to be kept above 9. Desferal can slow growth in some patients but Exjade and Ferriprox are other chelators that do not stunt growth. Desferal is preferable over iron overload, and the boy is well on his way to overload. He isn't using enough desferal. How many hours does he take it at a time? The easiest way to improve chelation is to add more hours each time he chelates. 12 hours is good at one time. Desferal only works while he's using the pump so the hours need to be increased. With modern treatment, ferritin levels should be kept as low as possible and under 500.

BMT has risks but the success percentage continues to rise. Gene therapy is only beginning and is still years away from being available for patients. There are new treatments being developed. New chelators and also drugs that will raise the Hb, reducing the amount of transfusions that will be needed. For now, the boy's iron needs to be controlled. This is most important.
Andy

All we are saying is give thals a chance.

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Offline qys81

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Re: New questions from the boy
« Reply #2 on: July 29, 2011, 11:02:53 AM »
Thank you very much for your advice, Andy. I can not contact the mother yesterday she told me she was ill. Once I know how long the boy is on desferal, I will post it.
 

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Offline qys81

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Re: New questions from the boy
« Reply #3 on: July 30, 2011, 09:38:33 AM »
The boy's ferritin is above 2000. I am so sorry to hear that. The doctor asked the boy on desferal 20days a month from now. I already told the mother the boy should on pump for 12 hours and do not miss any dosage. He was on desferal 10 hours a day, and two days a week.

The mother also want to know should the boy have some vitamine C and folic acid, and how many should the boy have.

Thank you all again for your help.

 

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