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deepak45 (Guest)
Dear sir,myson is suffering dmd since 8year old.Now he12,We are from mumbai. we are giveing him Acti base powder, carnitor tab 1tab aday, omino cortil 20 1st 10 days of month from last 1.1/2 year
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Replied on Tuesday, June 21, 2011 1:01 AM
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Mr Deepak, Omino cartil what you are giving for your son is cortico steroid tablet whose generic name is Prednisone. This tablet is being used in developed countaries for DMD children whose side effect is nullified by the systematic pattern of exercises and diet. But we don't have such care and support system here. So this tab might increase weight which could not be brought down at any case, we have many children of over weight due to this type of tab. Also studies show that taking this tab for longer duration will extend the walking of the child by 2-3 years, but reduce the life time by 2-3 years and has the impact of creating fracture in the vertebral column. Plz read about side effects of cortico steroid in www.mdfindia.org continue this. Even if you plan to stop, you should not stop suddenly, you have to gradually reduce the dosage and then stop. By mistake we too have given for 10 days when we diagnosed for our son at the age of 6 . But stopped when we came to know that.
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Replied on Tuesday, March 27, 2012 6:42 AM
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sinoby (Guest)
dear all, My son is suffering from DMD from last year. He is now 5 years. Please help me how can I take care of my SON. I pray to GOD,is there any medicine for this.pls give me reply .................
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Replied on Wednesday, August 17, 2011 2:55 PM
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If you are on facebook, we are puting a group together,here in Miami, FL, as to what can be done to help with kids with this problem. Please send me an invitation Sharan_kaur@yahoo.com on facebook and I will do all I cna help!
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Replied on Sunday, August 28, 2011 8:14 AM
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Dear Sinoby, It is difficult to digest having a son with DMD. Your son is just 5 years. Give him proper physiotherapy exclusively designed for DMD children. Hopes are there to get the medicine within a few years. may be 2-3. Maintain you son's posture and never worry about the negative side. Let GOD bless your family.
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Replied on Thursday, March 29, 2012 2:18 AM
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SANDOR proteomics hyderabad is doing diagnosis for DMD.You can contact them....Mail id is b.venkat@sandor.co.in
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Replied on Tuesday, August 30, 2011 4:46 AM
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What kind of research ha been done with holistic medicine? And how is creatine being used to combat this. Is it working or is it still in the research phase?
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Replied on Tuesday, September 6, 2011 5:19 AM
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Hi,
My friend's only son, 7 years old is having DMD.We are from Coimbatore. Is there any way to cure him. Kindly reply
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Replied on Thursday, September 15, 2011 7:25 AM
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Hai,We are also from Coimbatore. My son is also facing same problem 6 yr. If you have solution pl inform me too.
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Replied on Saturday, December 17, 2011 1:35 AM
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ashuguna (Guest)
HI MY FRIEND I'M 4M SLM MY BROTHER TOO HAV SAME PROBLEM NW TAKING TREATMENT FROM TIRUNELVELI... V FEEL D IMPROVEMENT IN HIS HEALTH CONDITION...
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Replied on Tuesday, December 20, 2011 11:28 AM
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Hi, my son was diagonised with DMD at the age of 4. He will be 7 end of this month. Is it possible to gather some information and let the group know the kind of treatment being taken by your friend's child?
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Replied on Friday, January 13, 2012 7:41 AM
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Hi, Thanks for the details can you please give Tirnelveli contact details, which may help for my son.
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Replied on Monday, January 30, 2012 2:15 AM
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Dear Arvind, We are dealing with hundreds of DMD children. We have cases, of broken ball and socket knee joint just because of the traction given at Tirunelveli treatment. Now the child is living with the unbearable pain because the ortho doctors said, it cannot be operated for DMD children. Be careful. Atleast the child will be living without any added pain if not given any wrong treatment. After you return from the centre within 2 to 3 months DMD children's health become worse than before going to the centre. There are so many centres like mushroom at Tirunelveli, which claim that they show improvement. But it is false. Personally visit DMD children who return from there and check whether the improvement is sustainable for years together. To my knowledge none is there. Am also a mother of a DMD child who passed away at the age of 17 yrs, 5 months. This is my concern for the DMD children. We are working for muscular dystrophy community. Please visit www.mdfindia.org
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Replied on Friday, March 23, 2012 9:39 AM
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hi am from Ooty. My son having this problem. Kindly send me the Tirunelveli address.
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Replied on Friday, March 9, 2012 7:57 AM
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