Re: Question for all

[Guest guest]

Hi ,

First where do you live?

Second. I have been told thay many RSS kids are double jointed because of

low muscle tone, and weak tendons and ligaments. Is this what you mean bya

double thumb?

Ken M

Question for all

Hi All!

This past weekend we met with the family of another RSS baby. The

only other child in our area with RSS. He was so adorable & reminded

me of in so many ways! The parents are just starting to get

comfortable with the diagnosis but the genetics doctor is considering

a new diagnosis because the baby has a " double thumb " The parents

are in limbo- I'vve told them that we have all been there at one

time or another so to hang in there. My question is have any of you

heard of this? I know Josh is tounge tied ( not a characteristic of

RSS) but this hasn't prompted any further action. Could this child

just have something in addition to RSS? The problem is that although

the doctor says there is a possibility he doesn't have RSS she hasn't

anything else in mind. The parents do not have internet service yet,

when they do I'm sure they will be asking questions for themselves!!

Thanks!

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[Guest guest]

,

Storm was also tongue tied when he was born. He got it from me. I

was born tongue tied as well.

He has RSS and I don't.

Carmen Mom to Storm

[Guest guest]

Hi Ken,

We live in a suburb of Buffalo, New York. No, this child actually as an

additional thumb. It's not completely formed or functional & he will have

plastic surgery somewhere down the line to remove it. Thanks !

- mom of (3yrs) & (15mons,11lbs10oz, RSS, ASD-repaired)

ville, NY