HBE-Beta Thal

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Offline Lokkhi maa

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Re: HBE-Beta Thal
« Reply #15 on: October 07, 2015, 09:02:12 AM »


Dear Andy,

Please give some idea about thalidomide..
Lokkhi Maa

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Offline Andy Battaglia

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Re: HBE-Beta Thal
« Reply #16 on: October 10, 2015, 07:09:57 PM »
Andy

All we are saying is give thals a chance.

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Offline Ratri

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Re: HBE-Beta Thal
« Reply #17 on: October 13, 2015, 10:57:42 AM »
Thank you very much Andy. I searched this site and others as well and finally found a good doctor.

I met with Pediatric Haemato Oncologist Dr. Arpita Bhattacharya from Tata Medical Centre, Kolkata. She suggested us 3 medicines:
1. Zincovit
2. Folvite
3. Calcium supplement syrup.

She also advised not to start transfusion unless Hb falls below 7.

Some of her suggestions are:

1. She provided one growth chart  till 18 yrs of age and asked to maintain that. She asked to monitor my son's growth closely.
2. She told soon or later my son may required transfusion but not very frequent since till 2.8 yr of age he is active without any symptom and transfusion.
3. Also to closely monitor his facial changes, if any deformities found then also transfusion required even if Hb>7. For this she suggested to take 2 photographs each month of him ( one from side view one from front).
4. My son's spleen is lil bit bigger in size.
5. AND she added in her experience she saw most of E-Beta Thal became transfusion free  after 20 years of age. This is the most relief part we heard.
6. We don't required monthly Hb check up unless fever. It can be done once in 6 months she said and asked us to come after 6 months.
7. She rejected the chance of BMT.
8. she also added, if we plan for our next baby then do a CVS testing and go for it.
9. She said, now a days nobody differs a thalassemia child from a normal child and grow him up as normal since everything is ok and manageable.

I shared this, thinking it might be useful for some parents like us. Truly the doctor is very nice and well behaved, having a very good experience in thalassemia, Leukemia BMT etc. and her way of thinking is very much positive like people in this forum, the only one thing she did not believe that, wheatgrass can increase HB :huh Gene therapy availability for general patient can take another 10-12 yrs she said.

But summary of whole story is, we are somehow get relief for sometime and thinking of enjoying a lot in Durga Puja ( Biggest Festival in West Bengal).

Thanks so much everyone for being with me and keeping my son as well in your prayers.

Regards
Ratri

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Offline Lokkhi maa

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Re: HBE-Beta Thal
« Reply #18 on: October 14, 2015, 09:55:39 AM »

Thanks Ratri.Please provide the details address of Dr Vijay Ramanan Pune's private clinic and always keep us update...
Lokkhi Maa

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Offline Ratri

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Re: HBE-Beta Thal
« Reply #19 on: October 15, 2015, 07:46:23 AM »
Dear Lokkhi maa,

You can get all details , address and contact number from http://www.vijayramanan.com/

Thanks.

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Offline Lokkhi maa

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Re: HBE-Beta Thal
« Reply #20 on: October 15, 2015, 10:58:26 AM »

Thanks Ratri... :)
Lokkhi Maa

 

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