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

[Guest guest]

,

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

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

_____

[Guest guest]

Hi ,

We live only 20 minutes from Mt.Sinai so the expense of the trip I can not

comment on but the value of Dr.H's expertise on RSS is priceless. I had taken

my son Henry (who was 2yrs old at the time)to 3 other endo's and none had

experience or a specific protocol for an RSS child. Many thought he didn't have

RSS, and those that thought it was a possibility didn't have a real plan on how

to help him grow.

I kinda feel that Dr.H is less distracted at Mt.Sinai than she was a Cornell.

Yes she has to do a lot more herself but I feel the visit is as complete as it

was at Cornell. She certainly has been more on time. Let's face it an hour or

so wait is nothing compared to the marathon days at Cornell.

Dr. H is a wonderful diagnostician and if she can not say with absolute

certainty what Colin's protocol should be then it is probably because she needs

some test results before coming to a conclusion.

She always answers your questions and is very good about speaking directly to

your child. At first I thought it was a bit odd that she hardly made eye

contact with me but she does not speak to the parents as if the child is not in

the room. She is their doctor and includes them in the discussion even

preschoolers.

I absolutely know that my child is where he is today because he is under the

care of Dr.H.

And if nothing else - New York City is fabulous! You certainly can't go wrong

with a visit to the best city in the world!

Henry - RSS 4 1/2 yrs old, 40in, 34lbs,

fundo/g-tube/pyloro/periactin/prilosec/benefiber/zantac/nutropin

- nonRSS almost 9yrs old