Hi Vanita and welcome to the site. There is also a HUGE facebook community that is very active if you would like to join us there. Your doctor is correct that there is currently no cure. But there are alot of things in the works that may help. I am sure your supplements are helping but know that his CPK fluctuates based on how active your son it. So, one day it could be very high and a few days later it could be low. It is really not an indication that the duchenne is being controlled. Do you know your son's mutation? Has he had a DNA test? Good luck to you and your sweet boy! Lori Ware, Louisiana, USA
good. There are several mutation specific drugs that could help and one going to trial in the US and UK that will be good for all boys. The trial and approval process is LONG and stressful, but....better than nothing! Ask anything and there are many of us willing to help!
Translarna is if your son has a non-sense mutation or a stop code. Utrophin, C1100 by the company Summitt PLC out of the UK is the one for all boys. Sarepta has the Exon skipping for Exon 51 that may be approved by the FDA this month. There is a website called http://www.skipahead.com that can show you what Exon's he will need to have skipped in order to help him.