Re: Can someone please help with new Dr. H visit questions?-Dayna

[Guest guest]

Thanks, Dayna for your note. This is very helpful! So did you say

that Alyssa is experiencing advancing bone age and body odor? What

is her height percentile? I know she is similar to Colin in that she

has been on the growth curve without GH, right? What did your other

Endo say about it? What testing have you had done?

I'm glad she is doing so well after having the tube placed!

> ,

>

>

>

> We are visiting her new clinic for the first time on the 4th of

February.

> Previously, we saw her at Cornell for 2 visits. It was definitely

worth the

> trip. We live in Kansas City, and the trip is expensive and long

but well

> worth it. I never leave with questions or wondering if there is

something

> else I should be worrying about or something she may have missed,

or is

> there another alternative. Those are all things I wondered about

after

> visits with other endos. She is thorough and to the point and not

very

> chatty. But rest assured she didn't miss anything.

>

>

>

> Our first visit at Cornell was very long, and most of it was just

data

> entry. She gets an entire history and is a very slow typist.

But, she does

> most of it herself and therefore gets ALL the info she needs. I

would be

> happy to let you know how it goes at her new clinic when we get

back.

>

>

>

> We see her twice a year right now, once in Chicago and once

6months later in

> NY. In between, we see an endo here in town who is willing to

work with Dr.

> H's protocol. The biggest reason we go to NY is to ensure that

tests and

> medications start in a timely matter. For example, no one had

mentioned a

> feeding tube for our daughter until we saw Dr. H. She thought it

was

> imperative we have one place immediately. Our daughter was 2 at

the time

> and weighed 17lbs and was 32in. In one year she has gained 10lbs

and

> 5inches. As you can see, it was very necessary for healthy

growth. We are

> now experiences under arm odor and advancing bone age. Our endo

here is not

> concerned yet. I certainly am and know that when I leave Dr. H's

office in

> a few weeks, I will be in good hands.

>

>

>

> I just like KNOWING my daughter is receiving the best care

available to her

> by a knowledgeable Dr. about such a rare disorder. Alyssa's RSS is

> generally considered to be mild as well. No reflux, no

asymmetry.

>

>

>

>

> Anyone I'm rambling now. Hopefully, this has helped a little.

>

>

>

> Dayna, Mom to Alyssa RSS and Lauryn

>

> _____

>

> From: colinandhaydensmom [mailto:jebarker@e...]

> Sent: Wednesday, January 12, 2005 11:52 AM

> To: RSS-Support

> Subject: Can someone please help with new Dr. H visit

> questions?

>

>

>

>

> I posted a few days ago and got one response (thanks, Kim) and one

> from .

>

> I really need some input on what to expect from a new patient

visit

> with Dr. H at her new clinic. Length of visit, what you got from

it,

> etc.

>

> We need to make a decision on whether to see her in NY or Chicago

> this year. I appreciate any feedback!

>

> Thank you!

>

>

> Colin (RSS) and Hayden - 4 year old twins

> Grant - 1

>

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>

> _____

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