It was advised to me to start a new thread specifically noting the process that we are going through. Let me start with a little background info.

In 2009 my daughter, who was 6 at the time, started complaining of neck pain. We were told she was having a neck spasm but there seemed to be no cause. As the months went by the episodes became more frequent. Finally, in 2011, her doctor began to take it seriously and started a series of referrals. She underwent, x-rays, catscan, MRI, and blood work. She was seen by, Ortho, Neurology, and Physical Therapy. Noone seemed to have any idea what was going on. The only thing that was ever identified is that she had a lack of curvature in her cervical spine due to muscle spasms.

In 2013 the spasms disappeared. We were overjoyed and for about 15 months or so Dd had basically no attacks. She was able to learn to ride a bike, swim and actually play like a healthy girl. She would still have the occasional headache, maybe a bit more than most children, but nothing compared to what she had been suffering with. For this we were very glad.

It was short lived and the first part of September it started again. She woke me up at 2:30 in the morning in massive pain. She was complaining of major neck pain along with a severe headache. I gave her 5mg Flexeril and eventually she was able to fall back to sleep. When she woke up the next morning the pain was still there. And so starts our journey all over again.

She has a constant muscle spasm on her right side of her neck which runs from the top of the shoulder to under the base of the skull. Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head. She has just had bloodwork and going for MRI today. She is going back to Ortho first per her Pediatrician. They have her on 600mg Gabapentin which doesnt seem to really help.

So this is our journey. It is debilitating pain for her and our family is struggling to deal with everything. The frustration from the lack of concern from the physicians is not helping. I will keep things updated here for anyone interested and also for my own sanity. I welcome any advice, ideas, or suggestions. Thanks for reading.