Hello Mr. Anup,
My son has been diagnosed with DMD. He is Athrv, age 3 and we stay in Gurgaon. Was just wondering if it is possible to get in touch to understand more about DMD management and difference in line of treatment.. here in India Vs in US/canada. Thanks. Regards, Rahul Singh.
My son walks with heels slightly raised but walks properly when reminded but is quite active otherwise, goes outdoors. I give him Nurtilite once daily and do his stretching (as told by physical therapist). What more should be done, plz advise. How is you son doing and what do you do for him. What r the possibilities u see. I got to know about Acceleron pharma currently condulting a clinical trial for phase 3 (after their product was banned in Canada due to side effects of gum bleeding, dilation of small blood vessels, etc though they were gone after discontinuation of treatment). The study might conclude in the second half of 2012. They claimed to restore the muscle tissues and prevent further loss by their product. Kindly share me your experience in the care of your child. I shall be thankful to you.
My son aged 5-1/2 years has also been diagnosed with 49-50 deletions. His last CPK level about 3 months back was 23,551 which was too much high. Also he has positive Gower's sign and has difficulty climbing stairs. He is undergoing a homeopathic treatment from today itself. I do not believe in steroidal treatment as given by most hospitals, yet there is no cure, so why make the child suffer/detiorate. I hope this will improve/stabilize his health. I shall be thankful to you if you give me any updated info on DMD treatment. My contact number is 9818798901.