Hi Thowell,
Welcome to NT.
I am sorry your daughter has been suffering.
As a mom, her suffering must also be sad for you.
My heart goes out to each of you.
I feel it's very important your daughter have a full work-up in a Neurophysiology Lab. More specifically, please look into Neuromuscular testing, like: EMG, NCV and whatever else a Neuromuscular specialist feels is helpful in diagnosing the cause. Neuromuscular specialists often recognize symptoms and signs not otherwise readily recognized by a General Neurologist.
There are various types of dystonias, myotonias, and other neurological conditions (Neuromuscular and Movement Disorders) which can show up at any age. Just one example (of many):
I hope your current Neurologist and/or Primary Care Physician will help in quickly referring your daughter for this type of an evaluation.
While I hope your daughter's does not suffer one of the complicated conditions, the accurate diagnosis of the cause of your daughter's condition is very important. Hopefully, an accurate diagnosis will lead to treatment targeted at the cause.
Symptomatic treatments can help; yet, often are not specifically targeted at the cause. These types of treatments are usually determined by what gives her some relief and not too many side-effects. Symptomatic treatments can be allopathic, integrative, physical therapy, etc. Any symptomatic treatment which gives her relief, without too many side-effects, is important. It's critical to also find out the cause of her suffering, as doing so may lead to more specific treatments which may help her more than simply treating symptoms.
Is there a Neuromuscular Clinic within the Neurology Department nearby?
Is there a Children's Hospital nearby?
Is there a teaching hospital nearby?
I hope you will start an ongoing thread in the forums below. I have questions and am reasonably sure other members may have questions/information to share with you. I think we can help in supporting you in finding more assistance for your daughter.
DejaVu