"Some parents are trying Tamoxifen for their children. There is a group in fb where you can find more details from people who are trying Tamoxifen.
Are you giving Steroids. If not then that could be an option to consider."
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Rahul Deshpande
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- Auburn, NY
- United States
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Rahul Deshpande's Groups
Rahul Deshpande's Discussions
Moving to Auburn NY
Started May 27, 2015 0 Replies 0 Favorites
We are moving from India to Auburn NY. My son is 9 years with DMD due to exon 44 deletion. Any suggestion on clinic that we should take our son. Also any clinical trial we can enroll him. I have very…Continue
Youngevity and Vector Machine
Started this discussion. Last reply by Keith Van Houten Sep 8, 2014. 2 Replies 0 Favorites
I read that a combination of Youngevity supplements and Vector machine is giving good results for DMD children. Some are only trying Vector machine and some are trying only the Youngevity…Continue
Can Atalurin be of any benefit for Children with deletion
Started this discussion. Last reply by Trinh Nguyen Aug 6, 2014. 1 Reply 0 Favorites
Atalurin is now approved and is said to be the first cure for DMD. My son is having deletion of 44 exon. Was wondering if Atalurin can give some benefit in deletion cases also.Continue
Stem Cell Therapy
Started Jul 26, 2014 0 Replies 0 Favorites
In India many DMD patients are undergoing Stem Cell therapy and there is some improvement seen. At this moment Stem Cell therapy seems to be the only treatment that is showing some sort of…Continue
Rahul Deshpande's Page
Latest Activity
"Hi Rahul,
I read about your comment you trying Ayurvedic treatments. Could you share if there is some positive outcome with it?"
"Hi Galia,
Thanks for sharing. Very exited to know that Tamoxifen is working. Are you giving it as part of the trial or on your own. What is the dose that you are giving. Did you observe any side effects. Did you see any reduction in fibrosis or any…"
"Lisinopril is generally the first Heart medicine given to DMD kids. As per my understanding it is started at the age of 7-8. Pl check with your son's Cardiologist."
"That's correct this is a 96 week placebo trial. So for almost 2 years you give IV to your child not knowing if they are getting medicine or not. Bad on our children. After 96 weeks the open label will start and will be completed in 2019.…"
"Good job done by PPMD and other organizations. Sarepta has started recruiting for the Essence study which is for exon 45 and exon 53 skipping. It has a placebo period of 96 weeks. Which is absurd, our children will have to go through 96…"
"My son has also exon 44 deletion. The study of Sarepta has still not started recruiting. See the link https://www.clinicaltrials.gov/ct2/show/NCT02500381?term=NCT02500381&rank=1
Bad news is that this study is going to have a 96 weeks placebo."
"Pat many thanks for your efforts. Your speech was moving and touched the heart. I saw the entire Ad Comm via live streaming. The DMD community made an excellent case for approval of Eteplirsen. The way children and their parents spoke was…"
"Ataluren is approved in Europe and available in many European countries. Its proven beyond doubt that it benefits children with non sense mutation. What more does FDA want. Why do they want more data I don't understand. The sad story of…"
Webinar: BMS Anti-Myostatin Adnectin Program at Online Webinar - Eastern Time Zone
March 30, 2016 from 1pm to 2pm
Wednesday, March 30th at 1pm easternPlease join PPMD and Bristol-Myers Squibb (BMS) as we host a webinar Wednesday, March 30th at 1pm ET to discuss the BMS Anti-Myostatin Adnectin Program, recent preliminary data from the first-in-human study of the BMS anti-myostatin, and a clinical trial that BMS is conducting to test this drug in boys with Duchenne muscular dystrophy.Speakers:Pat Furlong, Parent Project Muscular DystrophyLeslie Jacobsen, MD, Bristol-Myers SquibbLeslie Jacobsen is the Medical…See More
"Any news on the 45 skipping trial. Did they start screening children for the trial."
"I am also trying to enroll my son for this trial. Would be good to hear from those who are participating."
"Yanbin, Thanks for your suggestion, I am giving my son Deflazacort for the last 6 months. Was considering giving L-Arginine and Metformin in addition as the results look promising."
"Moen how many days did you give this combination? Did you see any side effects. Did you give the dose as L-arginine (3 x 2.5 g/d) and metformin (2 x 250 mg/d). Which brand of L-arginine you used? My son is…"
"Yanbin did you see any improvement in your son. He was given L-arginine only or metformin also, the above study I guess was with L-arginine and metformin both. Interested in know if I can start giving to my son."
"That's absurd $264 per day. I guess when Santhera gets approval from FDA the price will come down also then it will be a drug which Neurologists can prescribe."
Profile Information
- About my family:
- I have two sons
- Name(s) of child(ren)/individual(s) with Duchenne:
- Rohan Deshpande
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City:
- Auburn
- State:
- New York
Comment Wall (8 comments)
- At 7:53pm on December 11, 2018,
Nithin Dev Bandakka said…
- Hi Rahul,
I read about your comment you trying Ayurvedic treatments. Could you share if there is some positive outcome with it?
- At 11:12am on July 25, 2015,
amit said…
- Thx for reply sir actually I got my sons gene test report today and it is Neel but cpk level is 26000. Some reports stil not have performed
- At 4:57pm on May 8, 2015,
Rachel Sedacca-Replogle said…
Thank you for requesting my friendship. I am a stepmom and am trying to get a grasp on DMD and figure out what CAN be done. Look forward to learning along with everyone else.
- At 7:00am on November 24, 2014,
DEEPAK ARORA said…
HELLO MR RAHUL., I JUST WANT TO GET SOME MORE INFORMATION FROM YOU ABOUT THE SAME.. CAN WE TALK?? PLEASE SEND ME YOUR NUMBER..
- At 3:26pm on July 25, 2014,
Hi Rahul,
i consulted with Doctor about the Idebenone(Catena), but she said, medicine has not shown very promising result .. I also heard Dr Prasad Arving Rasal , how about his medicines, any improvement. i am planning to consult him as well...
- At 12:56pm on July 21, 2014,
Hi Rahul, what is a best way to reach you. your phone number/email? Thanks.
- At 4:56am on July 10, 2014,
Hi Rahul ,
My son is 5.5 year old and his DMD detected 1 month ago. There is not promising trial running at the moment. we are seeking for any other alternative treatment . Do you see any improvement in you Son on Hemeopathic medicine ?
- At 12:40pm on July 7, 2014,
Hi Rahul,
How old is he, what is the symptoms right now. are he taking any other drugs, like homeopathy etc..
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