Discussion Forums > Thalassemia Major
My Son Rudra
Lokkhi maa:
Hello Himanshu Kumar,
Thanks a nice reply.If blood volume arise then the overload iron will be manageable by chealaton therapy but if the transfusion gap reduce day by day then how my baby or all of thal baby will tolerate the horrible transfusion pain...
How and when all of our baby will be free from the pain ???
Mukta:
Himanshu : The link of the blood filter does not seem to work. Can you re-post it if possible. I did visit a thalassemic day care center recently at Thane and they did mention I should insist the hospital to use a filter. They also suggested I should be insisting them for NAT tested blood to be very safe with blood transfusions.I will be insisting for these before we take him for his next transfusion and also will talk to the hematologist. Will also try to get more information on irradiated blood from the hematologist I will be meeting soon.
Masarika : Thanks for posting about Dr Vijay Raman. I am planning to meet this doc next week.
I am also planning to meet a couple of other hematologist from Bombay whom I have heard have been treating Thalassemia major children.
1) Dr. Sunil Parekh : Hematologist : Practices at Bombay Hospital
2) Dr.M R Lokeshwar : MD Pediatrics : Practices at Lilavati hospital
If anyone have any experience with them please share.
Thanks to Canadian_family and Andy for your comments.
Himanshu Kumar:
--- Quote from: msarika on August 26, 2015, 06:15:53 AM ---Dear Mukta..
Dr Vijay Ramanan from Pune is one of the very good hematologist from India. Ph No- 02024484213. I m taking his consultation since 5 yrs.. & it is very useful
I just want to ask u all that Doctor says , if all the activity of patients are normal then we can wait till the HB level 6 ( no BT ), is it ok...
--- End quote ---
DO NOT let the HB fall below 9 in any case. Low HB may result in enlarged liver and spleen. The spleen/Liver recycles red blood cells / break downs old and damaged cells. In patients with thalassemia the red blood cells have an abnormal shape, making it harder for the spleen to recycle them; the red blood cells accumulate in the spleen, making it grow. An enlarged spleen can become overactive - it starts destroying healthy blood cells the patient receives during transfusions.
Maintaining high HB is also important for normal growth of the child. Poor HB also leads to weak bones and deformation of bones and HB. Don't worry about iron build up and go for regular transfusions. There are good chelators available these days. KEEP HB ABOVE 9.
Himanshu Kumar:
Pasting the link again. trust this will work. Though the earlier link is also working - I just checked again.
You can order blood filter from thalassemicsindia.org. The second link gives details of the product. Thalassemicsindia provides Pall filters.
http://www.thalassemicsindia.org/
http://www.pall.in/main/medical/product.page?id=48145
If any one is actively looking for BMT solutions, may visit the following centers
1. CMC vellore
2. Apollo Chennai
3. Narayana Hrudalaya / Dr. Pietro Sodhani / Eugenio La Mesa.
The above centers have huge experience in BMT.
Mukta:
Thanks Himanshu for further assistance.
I will get myself registered with thalassemicsindia.org . Looks to be very useful for thelessemics.
I am aware of CMC Vellore and Narayan Hrudulaya (under guidance from Dr Sondani's team) and plan to visit them in coming months.Did not knew about Apollo Chennai.Will try finding more details. Any one with any experience on Kokilaben Dhirubhai Ambani Hospital,Mumbai . They have also been listed by cure thalassemia group and its in my city itself.
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