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Jay - one other thing

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Jay - if you end up at Cedar's, and need a good geneticist, I have

an AWESOME geneticist, who is also just a basic great doctor.

still goes once a year to see her, and Rena Falk (name of

her) sees the RSS child " as a whole " -- gives me an entire report

with recommendations for each part of (e.g., PT, speech,

hypoglycemia, GI, etc.) Each time gets the stomach virus

and needs an IV, we drive the 30 minutes up there and admit her,

under Rena's care, even though Rena is a geneticist.

Jenn

> When you said you knew a mom that had the girl with Crohn's while

a stay in

> the hospital do you still have contact with them???? That would

be great

> to talk to her about her experience at Sinai as well.....You can

give her my

> email address so I can contact her...If she is willing??

>

> Thanks so much, Jenn that was kind of you to offer information, I

meant to

> add that in the prior email and got on a tangent

>

> Jay jbrethen@s...

>

>

>

>

>

>

> Jay, I know NOTHING about this. However, I remember learning at

one

> of my daughter's hospitalizations that there is some Crohn's

GURU at

> Cedar Sinai hospital -- the girl in the room next to has

> Crohn's, and lives in Phoenix. When the girl had an attack, her

mom

> drove her to the AIRPORT instead of the ER, and flew the hour to

LA

> and took her right to this doctor, who is actually their treating

> doctor. The mom commented that they did a lot of research about

the

> best Crohn's person on the west coast. Maybe I could find out

who

> it is and get her email address??? Jenn

>

>

>

>

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