Hi everyone,

I am writing about my 8yr old son, 3 years ago he was dx with
Systemic onset juvenile rheumatiod arthritis and is on a lot of
medications for this condition including a hospital visit every 4
weeks for IV medications.

Last fall his rheumatologist sent us to a geneisist as she felt he
could also have something else going on. She examined him and didnt
feel he totally fit the dx critera for EDS or marfans. He has
hypermobility in some joints, fragile skin which splits cigarette
paper scars on his knees, easy brusing. I have also recently noticed
his gum is way down below one of his new front bottom teeth. She
told us that he some signs of a connective tissue disorder but that
was it. To be on the safe side she sent us for an echocradigram but
she said it would most likely be normal.

To cut a long story a little shorter we found out in the spring that
his echo showed he had a aortic root dilation at the sinues of
valsalva. We were told to repeat the ehco in a year to see if theres
any further dialation.

I have been trying to research connective tissue disorders,EDS and
Marfans and see if a person can have Junvenile rheumatoid arthritis
as well as something like EDS, is it another issue totally.

Any words of wisdom anyone can give would help me a lot. I hate
being in a grey area. I like the facts and the i can deal with
things and move on. Not knowing exactly whats going on is driving me
nuts.

Thanks
Helen