I am posting on here so that my information may be of help to others. My DD 14 years old was recently diagnosed with EDS type 3. I have EDS and was diagnosed by my NS when I was being seen for pending chiari surgery. He diagnosed me by the beighton scale and my rheumatologist saw no reason to see a geneticist since we had ruled out vascular and they only treat symptoms anyways. I knew at time of diagnosis that my children have EDS as well as they both would pass the beighton scale criteria. I talked with the pediatrician and I found no reason to have them diagnosed unless intervention was needed. Well for my 14 year old playing soccer had gotten to where she had neck pain so bad she would be on the couch crying. Then I started thinking her episodes of basil reaction and migraines could be pots that was misdiagnosed. So off to her pediatrician and after a very long discussion and her researching on her medical reference she came back in and asked me why I thought EDS. So I had my daughter show her tricks. She said oh my goodness you are right and had a horrible look on her face. I said I know...so she referred us to children's hospital hearing, rheumatology who sent us to spine orthopedic dr, cardiology, and geneticist. I am now comfortable with my rhum not sending me to geneticist because with checking my daughter and I out and looking at our medical histories the geneticist diagnosed my daughter with EDS 3 and there is not "testing" for that. I was leaning that direction in my mind for me as well and that was confirmed by her geneticist. There was not a huge ah ha moment yet it was nice to talk to someone who knew as much and more than I did about EDS. I have a huge story to tell about my vision journey but I need a typing brake:) More to come tonight....love ya bendies!
I thought I had some vascular symptoms in the beginning. I had horrible varicose veins and some other traits. You had said you doubted it was vascular since I had kids without complications. They did extra testing on me before surgery. Like an mrv of head to see if I had any aneurisms. They checked my heart really thoroughly etc. So as you know we can have traits of other types of EDS and not have that type so thank God it looks like no vascular EDS in my line:) Yeah I won't be pushing to go to the geneticist for me after seeing Rys. She was very good and very nice but could tell by asking questions and looking at the 2 of us that we had type 3. She was very thorough and even looked at whole body skin. She would say ok based on your scars this...or based on no skin tears this...based on bruising (or lack of) this... She was great but knew that the further testing would not help with type 3 and would only cause additional pain. She is partnering with her pediatrician for future treatment so that is beneficial:)
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
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.