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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: 7 month old infant diagnosed with Beta Thal Major  (Read 431 times)
saaagesh@gmail.com
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« on: April 14, 2018, 07:59:42 PM »

Hello Experts,
 I am new to the community and this is my first post.

Recently, my nephew has been diagnosed with Beta Thal Major and he is 7 month old. He has undergone his first blood transfusion 15 days back as his Hb level was dropped to 6 mg. So far, we have received recommendations for continuing with blood transfusion until we find a BMT match from sibling.

Based on experience , I would really appreciate any guidance on what should be our next steps.

Also, can someone advice on below queries:
i) Is there any way to search for BMT donors in India. Any database to find matched HLA to consider for BMT. I came acorss "Be The Match® is operated by the National Marrow Donor Program" in USA but do we have something similar in India?

ii) We recently came across treatment options from Dr Ramanan with drugs like HU and Thalidomide. Should we consider this option for 7 month old infant?

iii) Any diets suggestions.

iiv Any other suggestions/advice would be greatly appreciated.
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Andy
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« Reply #1 on: April 20, 2018, 04:46:01 PM »

First thing, don't allow the Hb to go so low. It hampers growth and development when the Hb is so low. Try to keep it no lower than 9-10.

I would suggest contacting Dr Ramanan for a consultation to see if his treatment is appropriate for your child. Much depends on the particular genotype of the patient. The child may be a bit young to start the regimen. The doctor can advise you.

A healthy diet is very important. Avoid empty calories and junk food and teach the child to eat nutritious foods. Foods high in antioxidants like fresh fruit and vegetables should be emphasized.

I don't have an answer about bone marrow matching in India. I would suggest researching the success rates of various centers in India before thinking about having one done for your child. Mortality rates at some Indian centers are not acceptable.
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Andy

All we are saying is give thals a chance.
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