We are back with new Dx!!
Well last time we were here dd13 had just been dx with Mast Cell Activation Disorder by a Genetisist that we were seeing. After months of no relief through several different treatment plans I sought the advice of a specialist with this disorder. She ordered the needed test and within a week said Dd13 did not have MCAD. So back to the drawing board we went. However, this specialist referred us to a Pediatric rheumatologist with John Hopkins. She examined Dd13 for almost 2 hours and concluded she had Amplified Muscular Pain Syndrome. She then referred us to a Pain Specialist at Nemours Children Hospital. Turns out she interned at Boston's Children Hospital and is now one of the top Pediatric Pain Specialist. within 5 minutes of examining dd13 she confirmed the Dx of AMPS.
She immediately started her on a pain management program. She does 5% lidocaine patches everyday, has had several trigger spot injections and will be entering a 5 week Pain Rehab clinic in February. She is still suffering very much every day as they continue to adjust her meds. I really just wanted to encourage any parent to keep at it! There are still doctors out there that care a great deal about there patients.