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Re: CHAT - Ana

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Hi Pat,

I grew up in Mentor, on the far east side of Cleveland.

I wish I could help with docs, but I was born on an Air Force base in

California and spent my first 3 years there. I was dx'd there at

13mos. That ped told my mom " She has RSS. She's going to be fine,

just short. There's nothing you can do. Sign her up for gymnastics

and horse-riding lessons! " (I took gymnastics lessons for 13 years

but never did get the horse-riding lessons!!)

In 1978, it was basically true that there wasn't anything she/we

could do. So I never visited another doctor about it again... until

I went to a geneticist here in Iowa to confirm the dx -- I don't

think that even that happened back then. my mom was just so thrilled

to hear about RSS just making me short, after 13 months of horrific

prognoses and tests!

Sorry I can't be of more help! I hope feels better soon!

-Ana

> Hi Ana,

>

> We live about 25 West of Cleveland. Where id you grow up, and what

medical

> facilities did you use?? is currently being seen at the

Cleveland

> Clinic. although we are really unhappy with the endo dept there.

>

> Pat (g-ma to , RSS, 31 months, G-Tube)

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Hello again Ana!

For the most part, we've had some good luck with the Drs at the Cleveland

Clinic. It's just the endo that is driving us nuts!! We were talking to the

GI, and she wasn't at all surprised that we were having problems. She said

that first, he's just a difficult Dr to get along with, and second, we

probably intimidated him, by being informed, and knowledgable! I was going

to lodge a complaint about him, but the GI said that it would do no good,

because he IS the head of Pediatric Endocrinology! Doesn't everyone have a

boss that they have to answer to???

I really like your positive attitude, and I think your messages about

self-esteem should be applied to all kids, not just ours. I've found with my

4, that there is always something about any kid, that gets them picked on.

All kids need to know that it's " okay " to be different, and to accept

themselves for what they are.

Pat (g-ma to , RSS, 31 months, G-Tube)

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