Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: pmeet on December 13, 2011, 06:36:13 PM
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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.
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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.
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thanks andy.
I ll request doctor to prescribe for those tests then.
Again thanks for such wonderful portal
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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
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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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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).
Hi Dear,
Thanks for the information.
How should I get appointment with Dr. Sirisha Rani, I would like to meet with her.
Usually how much they are charging you per transfusion ?
Please share with me the HPLC Data and DNA results with me about your child, how many kids you have?
Kindly do reply to me.
Sys
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Here is contact information:
Rainbow Children's Hospital
Plot No.:22, Road No.10, Banjara Hills, Hyderabad - 500 034
Tel.: 91 40 44665555, 2331 9191, Fax: 91 40 2339 7476
You can make initial appointment to discuss transfutions and transplant.
Their charges are 3000-4000/- each trasfusion and it including blood.
I do not have DNA results at this moment to share.
I have only one kid. You might know next one will not have the same disease 1- 4 and unfortunately 2nd one had the same for us and no more trials untill unless first one has cured completely.
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Doctor is good , but i am least impressed by their cleanness.
Given that this disorder is not insurance covered in india, 4k per transfusion is not sustainable.
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Doctor is good , but i am least impressed by their cleanness.
Given that this disorder is not insurance covered in india, 4k per transfusion is not sustainable.
Hi pmeet,
Actually you could take up a general medical insurance and that should do the work. I am from India as well and I've taken the insurance, I mean, my Dad did took for me.
It should suffice with Thal major as well.
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Hi Pmeet,
4k is just too much for one transfusion in addition u need to take care of celation medicines later those are expensive.
About Hyd I just know that there is a society name Sickle cell society in Hyd which gives medicines n filters in very less price compared to market. you need to get yourself registered there paying 2k. And they transfusions also but I am not aware of the rates of transfusion and blood.
I child had antigen testing done before his first transfusion...thanks to the blood bank and doctors those advised me to do so.
Please contact Sickle cell society. contact no. 040-24560011. Call them or Just dial n take the complete address. Its somewhere near Charminar.
Best Regards,
Binita
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Hi Patrik,
I have too taken a general insurance for my Thal Major child and found out through other insurance companies also...it doesnt cover Thal major illness anywhere.
Please let me know in which way has your insurance company say that it might help....plz give the name also so that even I can apply there....cause exps are too high and planning for transplant also.
Hoping HGod help us...........
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Hi Patrik,
I have too taken a general insurance for my Thal Major child and found out through other insurance companies also...it doesnt cover Thal major illness anywhere.
Please let me know in which way has your insurance company say that it might help....plz give the name also so that even I can apply there....cause exps are too high and planning for transplant also.
Hoping HGod help us...........
Hi,
Did you tried ICICI's ?
-Pratik.
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Hi pmeet,
Actually you could take up a general medical insurance and that should do the work. I am from India as well and I've taken the insurance, I mean, my Dad did took for me.
It should suffice with Thal major as well.
What is the name of your policy? As far as i know there is no policy for existing dieses like thal major.
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Ah, I forgot. Its actually my dad's company took a family insurance policy which covers this as well. :)
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Ah, I forgot. Its actually my dad's company took a family insurance policy which covers this as well. :)
pratik,
to the extent i believe when your dad's co took a family insurance policy it must be a group or a floter which cover all the employees of the co. and it doesn't cover pre-existing disease. and unfortunately there is no medical cover or health insurance for thal. major.
1 good news for gujarati having age less than 18yrs.
Govt of gujarat is providing asunra free of cost under school health card
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Also if anyone does not know, in Gujarat (I don't know about other states) the civil hospital (in Ahmadabad) also provides Asunra (exjade) free of cost. :)
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Also if anyone does not know, in Gujarat (I don't know about other states) the civil hospital (in Ahmadabad) also provides Asunra (exjade) free of cost. :)
hi
some other states are providing or are going to provide like delhi, gujarat, punjab. You must have school health card and age<18yrs or you are an owner of BPL CARD