I am very happy. Thanks very much

I want to share the good news and especially thank you all for your Good advice. Today we have made the analytical and his hemoglobin is 7,7, he has got 8.6. You have only been here a month hydrea. I am very happy. 10mg/kg This shot and wanted to know if you want to raise the dose not just to me or that apparently is working with a low dose, if it is recommended it to pound a15mg/a greeting.

Keep smiling.....

that's great to hear!

Hello sharnin. Thank you for your comments are helpful. My daughter is a beta Delta thalassemia and you know hydrea this shot. His hemoglobin is 8.6. Before we put hydrea transfusions but crisis haemolytic way for antibodies. So we decided to try the hydrea. I wanted to know your opinion on marrow transplant so my little son is HLA idéntico

Dear Lola,

I am not sure how to answer that question, many of us are awaiting gene therapy and hoping that will be the answer for us, BMT is a dream come  true for those who survive without complications and a nightmare for those who don't make it or are plagued with complications that may be worse than thalassemia itself.    I can't say for sure that gene therapy will be the answer in the near future - but I am very very hopeful.

Dear Sharmin,

How are you and your baby?Hope you are doing well.I got many information from all of your discussion.Thansk to all of you.

Please note, My 17 months old baby have e beta thalassemia and she needs transfusion after every 49 days on hb level 8 to 7.She is not interested to taking her meal and milk but always wants to drink water.Whats supplements and fruits will be perfect for my baby pls advice.

Currently I am giving her:

Folic acid 2.5 mg
Zinc 5 ml (Daily)
B complex 5 ml (Daily)
Multi Vitamin 5 ml (Daily)
Vitamin E 200 iu (3/4 capsule weekly)

Still I am not giving her banana and apple.Her weight is 13 kg.Already she have taken 9 transfusion and last week her test result shown that her TIBC is 49.00 mcmol/L and Serum Iron 25.00 mcmol/L.When I will test her Serum Ferritin and up to which level it is safe?I mean when I will start her iron overload treatment?

According to your experience pls suggest me.

Thanks
Mridula

Dear Mridula,

Your child's hemoglobin is dropping too low before transfusions. Please transfuse your child when the hemoglobin is close to 10.  Allowing hemoglobin to drop so low is bad for her bones, her spleen, he ability to grow and thrive, and her general well being.  Appetite tends to be suppressed when hemoglobin is low.

Wishing you the best,

Sharmin

Thank you Sharmin for your early response and suggestion.
Hope in future I will get more info from you..