Discussion Forums > Thalassemia Major

checklist before first transfusion

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pmeet:
Hi Folks,
I am from India,Hyderabad. My 8 months old daughter has been diagnosed with beta major.
I was in shock state till yesterday but looking at this forum has given me strength.

Her hemoglobin level is 6.5 in last report. Her Reticulocyte Count was 25%.

Doctors have advised blood transfusions. They have advised us parents to take tests to make sure we both are carriers and we should be careful in case we plan for next baby.
Other than that they have advised to take DNA mutation exam for the baby.

Are there any tests we need to take before first transfusion?

Also is anyone from India and specifically hyderbad here to help me hunting for good place to get regular transfusions.

Andy Battaglia:
Hi pmeet,

If a hemoglobin electrophoresis has not yet been done, that should be done for a baseline. I would also suggest you have an antibody genotype and phenotype done, again as a baseline for future reference. Both parents have to be carriers to have a thal major child. As far as where to go in Hyderbad, if you don't get a reply here, try at our Facebook group at https://www.facebook.com/groups/78504283219/  There are quite a few Indians in that group so you should be able to get some replies.

And transfusions should start as soon as possible. Her Hb should eventually be kept above 9.

pmeet:
thanks andy.
I ll request doctor to prescribe for those tests then.

Again thanks for such wonderful portal

TPF-Help:
Hi Dear,

Have you did HPLC and DNA testing for your daughter ? Have you did your HPLC and DNA testing.

I am also from Andhra Pradesh.  R u sure your daughter is Major, kindly share with your HPLC data with me
and we will discuss in detail.

The treatment of thalassemia and transfusions frequency is differ in other countries.

Bye.
Sys

van:
Hi,
I would say in Hyderabad Rainbow hospital is one of the good hospital for Thalassemia patients. I am not sure where you guys were doing checkups. Dr.Sirisha Rani, Pediatrician & Hemato - Oncologist is very good doctor at Rainbow hospital.

My daughter was diagnosed when she was at 6 months older and now she is 21 months older. We were doing regular transfusions at Rainbow hospital every 3 weeks till 10 months older and after every 4 weeks.

Andy is Sup.Expert to answer all questions. He is really great and this forum makes you become stronger and stronger. Also we have some other members to help you and share their experiences(Cari, Shermin etc).

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