Originally Posted by Lori H.
I did look at CTD symptom lists years ago but thought he didn't have enough of them to have this but that was before he got scoliosis which is also a symptom. When he was younger his spine was straight and his hypotonia was mild and he didn't appear to have any kind of disability to most people.

This is us now.... When I saw the recommendation that we follow up with a connective tissue disorder clinic and specialist I looked up the symptoms and I felt like Ds doesn't have many of the symptoms. So I simply dismissed it. The neuromuscular specialist did mention it but didn't seem very concerned. Thanks to you, I know better now and will follow up.