~Doctors Appointments~Feel free to share appointment updates in this section.
Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
It went great. She is an amazing doctor. She was very thorough with her examination and family history. I scored and 8/9 on the beighton scale. She has switched me to Classical type, but says I'm pretty much inbetween HEDS and Classical.
She has given me a plan that is very thorough and I am really hoping will work. Due to a family history of aneurysm I have to get MRA's done of my head, thorax and abdomen to make sure that I don't have any. she also wants x-rays of my whole spine cause she said that it definitely was not aligned correctly. she wants PT for my neck for muscle relaxation and wants me to consider traction for my neck and lumbar spine. Want me to stick with the pain program that I'm getting evaluated for on tuesday and wants aquatic PT as well. She suggested trying a muscle relaxer and really getting to a point where I can move as much as possible to try and save my joints in the long run.
I need to get silver ring splints for my fingers and she wants me to try a low glycemic food plan to as well to see if a change in diet can help with inflammation.
I thought it was a very positive experience and I'm really hoping that I'll be able to get more functional with her plan.
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.