My son's DMD symptoms have always been manifested in muscle pain first in his legs and now pain in his neck and shoulders. Do any of your boys have this problem? All the doctors I have talked to have said it is very unusual. He is 5 years old and very active. We don't feel the need to start steroids yet but I wonder if it would somehow help with his pain. Any feedback would be appreciated.
My son has the same pain but not often. We just massage his shoulders from time to time.
We've found much relief through the use of several interventions: weekly visits with a good physical therapist (who is used to working on neck/shoulder/back strains/pain/etc.) who uses a TENS unit, ultrasound, soft tissue work and extensive manipulation; bi-monthly visits with a good massage therapist for +/- 30 minutes of deep soft tissue and muscle work; hot packs (microwavable kind) resting on the area in pain - used whenever pain is strong; daily gentle stretching of the affected area; and daily gentle massage (+/- 5 minutes per day). The combination of these therapies have proven very effective for our 7 1/2 year old, Sam, who does not have fractures, just suffers from neck/shoulder pain due to poor posture brought on by weak core muscles. We often sing songs and tell jokes and laugh, too - we're firm believers in the power God has given us to overcome seemingly insurmountable obstacles! As an aside, we started Deflazacort when Sam turned 6 and haven't looked back. Although there are side effects, the Deflazacort has been a true God-send - the difference in his physical ability is like night and day. :o)