Question - Shoulder Injury (dystonia)

by Julie
(Miramar, Florida)

My 9 year old daughter was diagnosed last year July with Dystonia, a neurological condition that affects the muscles of the body. In her case, the condition only affects her left side. The condition causes her muscles to get very tight, affecting her ability to chew, swollow, speak, use her left hand and leg. Her mobility has been severely impeded over the past year but since February of this year, it seems to have leveled off.

My daughter has undergone every test imaginable and all results have been negative, including a CAT Scan, PET Scan, and an MRI of the brain. While it is good to know that the results were negative/normal, we would feel more comfortable knowing what is wrong.

Based on my observation, the condition seems to stem from the muscles at the top of her shoulder - between her neck and shoulder. It appears that there may have been some sort of injury to her shoulder around the time we noticed something was wrong that we are not aware of at the time.

We are praying to God for a miracle that she will regain complete mobility soon. She is being followed by a Neurologist from Jackson Memorial Hospital. We are also seeing other specialists in the Miami-Dade and Broward areas in addition to engaging in daily exercises to help stretch and keep her muscles active.

We would like to know definitively if there is an injury to any of her shoulder muscles, especially the trapezius muscle that is possibly not being detected by the doctors, the X-Rays, or MRIs, and what can my husband and I do to help our daughter regain complete restoration of her left side, including her ability to chew, swallow and speak as she did prior to this condition.

Any light you can shed on my daughter's case would be greatly appreciated.

Thanks.

Julie