The children's hospital was good today!
They were very thorough and even knew what EDS was:)
They even commented on her loose kneecaps.
They do suspect cranial instability for Ry.
They sent her for neck and complete spine X-rays.
They will review them and refer us to the spine Dr and PT at children's
She said PT is a fine line because the joints are hypermobile so we must be
careful there but she has some muscles that are too tight trying to compensate
so we need to find a happy medium.
They are referring her to genealogy too.
She said we don't need genealogy to know she has EDS but it is a piece of the
She also ordered cardio and agreed with me that POTS was something we need to
So it's a start and I'm excited they didn't look at me clueless!
They also said soccer is probably a bad idea:(
Yeah I just copied and pasted this from our old email because you asked me to share it so you knew more current information too:) still might be helpful for others to see the journey if they are starting later than us
Copyright 1994-2016MedHelp International.All rights reserved. MedHelp is a division of Aptus Health.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.