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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2017





54184 Posts in 5696 Topics by 5776 Members
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This is Thalassemia Patients and Friends,
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Lisa Cammilleri.
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Author Topic: update on Hassan  (Read 1582 times)
maha
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« on: July 16, 2017, 06:24:30 AM »

Hi
Its now over a year since my 11 year old has been off transfusion. The last BT he had was in june 2016. He has been on the 'novel therapy' by Dr Vijay Ramanan. The entire year his hb was between 8.5-9.5. Yesterday for the first time it recorded a 10.4gm/dl.

maha
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Lokkhi maa
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« Reply #1 on: July 17, 2017, 07:00:45 AM »


    Maha

Could you please give me the address of Dr Vijay Ramanan and share his appointment system.
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Lokkhi Maa
Fahed_FN
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« Reply #2 on: July 17, 2017, 11:28:54 PM »

Congratulations Maha,

Excellent news indeed.

I would like to know what are you giving your son currently, i am planning to have a BMT for my son in India and it would be much more relieving if we can raise HB without a BMT.
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maha
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« Reply #3 on: July 18, 2017, 01:29:49 AM »

@Lokkhi mama
Dr Vijay Ramanan is located in Pune, India. Appointments can be scheduled by calling on 9555585203. You could email him at info@hematologyclinic.com

I reside in KSA, and we book an appointment every 6 months, also carry meds for 6 months.

@Fahed, presently he is on thalidomide, wheatgrass, hydroxy urea, folic acid, aspirin, L-carnitine, L- argenine, Vit B12, and grape seed extract. These are prescribed by doc - besides these I give him vit E and IP6 - off and on, as he is not on chelation from the time his ferritin hit 200.

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Lokkhi maa
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« Reply #4 on: July 20, 2017, 02:40:53 AM »


Thank you Maha...

May Allah bless your family...
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Lokkhi Maa
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« Reply #5 on: July 22, 2017, 04:23:36 AM »

Thanks Maha,

How often was Hassan getting transfused and what is his HB at that time?

I will work on scheduling a visit to Pune and seeing Dr. Ramanan.

May Allah bring cure and good health to all our children.
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maha
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« Reply #6 on: August 15, 2017, 02:42:25 AM »

Sorry for the late reply, was traveling. Initially Hassan used to be transfused every 4 weeks 15ml/kg, but as he grew and his requirements increased we transfused him every 3 weeks, 12ml/kg as we could arrange for only one donor at a time. His pre transfusion which had been over 9.5 for years had dropped to 8.5 and the hospital refused to use another unit. Finding veins was becoming a issue and he was getting pricked over and over again in the same hand. So had decided to try Dr Ramanan's novel therapy. He was transfused twice first after 5 weeks (hb 7.5) and then after 8 weeks(hb 7.8) once we started the treatment. Alhamdulillah after that for 6 months his hb stabilized around 8.8 and then started to rise. 
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Andy
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« Reply #7 on: August 19, 2017, 12:35:48 PM »

Another patient helped by Dr Ramanan. It won't be enough for every patient, but so many are being helped. Not only does this help the individual patients, but it also lessens the demand for the available blood supply for other patients.
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Andy

All we are saying is give thals a chance.
Sharmin
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« Reply #8 on: August 25, 2017, 03:33:07 PM »

Maha,

This is such great news!

Sharmin
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Sharmin
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« Reply #9 on: September 19, 2017, 01:56:48 PM »

So happy for you Maha
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sanjuna
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« Reply #10 on: September 19, 2017, 11:01:33 PM »

Hi Maha, Thanks to post this good news, I like know is your son use take transfusion from which age, is he takes any tab to reduce Iron level before go to Dr Vijay Raman.

After getting this information I am planning to visit Pune to meet Dr Vijay Ramanan. My son is 2 yr old, he started taking transfusion every 3-4 week since his six month age. last 3 month his iron level also more he is taking tab for  this last 3 months.
So mainly like to know from you during Dr Vijay Ramanan treat , did you continue other tab also and with blood transfusion, or you stopped all other things.
How many months you continue for Dr Vijay Ramanan's treatment .
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sanjuna
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« Reply #11 on: October 16, 2017, 11:56:35 PM »

Hi Maha,
Please help me to know, are you still continue with Medicine or completely stopped.
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maha
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« Reply #12 on: November 01, 2017, 02:10:33 AM »

Hi Sanjuna
My son was 1yr old when he first started transfusion. He started chelation when he was 2yrs and 3 months. When we started Dr Vijay Ramanan's meds his ferritin was around 600. So he reduced the dose from 800 to 500. He was chelating along with other meds for 3 months or so and stopped chelation when his ferritin reached 200. Now its 17+ months he has been off transfusion. His hb last week was 9.4. Dr Vijay Ramanans therapy is a management and not a cure. so he has to be on the meds - cannot stop it, so far we are on the same dose prescribed initially. Some of his patients were able to reduce the dose to half though.

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