connective tissue disorder

[Guest guest]

I've checked out the Ehlers-Danlos Syndrome website that posted

about. I found a few things that worry me regarding Jake. I mentioned

once to that Jake's joints click/pop often, and she asked if he

was ever diagnosed with connective tissue disorder. The answer is no.

After reading info on the site, Jake has a few symptoms such as joint

hypermobility, flat feet, and smooth/velvet skin. Is is possible that

he has these things because he's an infant? Or is because he does have

a disorder? Is it a geneticist who makes this diagnosis? And how does

EDS affect scoliosis?

Jake has his 15 month well visit next week. Should I wait until then

to tell my pediatrician, or should I call now and try to get in with a

geneticist before Jake meets Dr. and Dr. Mehta? Sorry so many

questions. My mind is reeling....

Slighty nuts,

(10-11-01)

Jake (07-24-04)

[Guest guest]

Hey Amy,My son has a conective tissue disorder, they thought he had beals syndrome when he was born( because he is soo slim) he has been tested whitch came back negitive. Now we are kinda on he fence about what he has. Thaddeus is very long and lean, he is double jointed in his elbows and shoulders. This made it really hard for him to start crawling,the scoliosis didn't help eaither. We are trying to build up the muscles in his legs so we can get him up and standing. We go back at the end of the year to see genetics. They have all told us there really won't be any affect on his development it's just going to take him longer to get it at first. Only time will tell right. If she has any questions about it just ask. I know there are lots of people on here with the same situation.Mommy to Thaddeus Sent from my iPhoneOn Jul 15, 2010,

at 7:54 AM, "Amy" <amscales11@...> wrote:

My friend and former CAST member has a son who has just been referred to a geneticist for a suspected connective tissue disorder. I feel like I've read that several of you have children with a connective tissue disorder. Any and all input and advice you can give would be greatly appreciated!

Amy

mom to Makenna (3 yrs old, in 3rd cast from Chicago.)

you can read makenna's full story at www.sosmakenna.com