My son's level was over 20,000 at diagnosis at age five. At age 15 it was 2,994. It is my understanding that the levels are higher when the boys are younger.
Hi Yasha ,can I ask why you not starting steroids yet?my understanding is ck levels can be higher or lower but the deficiency is still there .Steroids slow the process of wastage of muscles.would you like to share what supplements you are using?
My son is 6 yrs old. We are not on steroids yet also. We are waiting for the VBP-15 trial to open up. It looks like it will be around March from my understanding.
We are now considering the CAT-1004 trial. I am trying to find out what we need to do to get plugged into this trial. Do any of you know what we have to do?
With regards to supplements, we tried CoQ10 for one day and he woke up with his feet swollen? I "assume" it was because of that one dose. For that reason, we haven't given it to him since. Have any of you had any issues with it and have you all seen any benefits?