My 10 year old son was diagnosed 2 weeks ago with Ehlers Danlos Syndrome. I'm kind of freaking out (sorry). I am brand new to this forum, but there seem to be some really nice people here, so I'm hoping for a bit of help.
Generally, his symptoms are hypermobility of joints, slightly blue sclera, loose skin, can see his veins through his skin on his chest, bruises easily, fatigue, tummy pain, leg pain, can't bend and touch his toes due to pain and stiffness, and he has an indentation above his sternum.
A rhemotologist diagnosed him, but hasn't yet told me what type she believes he has. It seems like he has some of the symptoms of more than one type. Since I know that's impossible, how do I know which type he may have or what to watch for? Of course, I knew NOTHING about Ehlers Danlos before her diagnosis so I didn't even know what to ask at the last appointment. He doesn't go there again until the end of March.Ehlers
He is having additional testing including visiting an ophtholmologist, having an EEG w/ Doppler and an MRI (Bone Density/ DEXA Scan). Those tests are within the next 2 weeks. Until then, I'm trying to gather information and make sense of everything. However, ALL the data I have assumes that I know which type he has.
I am even open to guesses!!! Help, please? :confused:
Thanks if you are able.