Re: Decision to go to NY - Sheryl

[Guest guest]

Hi Sheryl,

The thing that is most important to me about Dr H is that she's sure of

herself, and she doesn't mince words.

The Drs here in Cleveland " think " they know what they're talking about, but

then I repeatedly catch them quoting studies that are years old! Not one of

them seems to be " up-to-date " when it comes to RSS.

The Drs here are also rather wishy washy on their decisions, and that

doesn't do anything to make me feel secure in leaving medical decisions for

solely in their care. Numerous times, over the last 3 years, I've

had to " suggest " treatments for whatever problems was experiencing

at the time. Shouldn't they know this stuff???

From day one, Dr H " told " us what was going on, and what needed to be done.

She was firm, concise, and accurate, every single time! She has NEVER been

wrong when it came to a problem with , even when he was here in

Cleveland, and she was in NY!! That doesn't mean that if I'm not comfortable

with what's being said, I wouldn't question her about it, but she has always

been more than willing to take the time to explain her train of thought.

Something the Drs here take offense to.

If I could afford it, would go to see Dr H every 3 months, if for no

other reason than my peace of mind!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

Hi Sheryl,

we saw at least nine doctors in the Sacramento (CA) area over the first

three years of Willie's life. Although one ran the GTube Clinic, she never saw

the hypoglycemia. Two were endocrinologists and one a geneticist and none could

definitively say RSS. We walked into Dr H's office in NY with a limp,almost

-3 -yr-old and were recognized immediately for what we are:an RSS family. Katy

was there, looked at Willie and welcomed us. She showed us a picture of the

other kids at the convention and there were all Willie's brothers and

sisters! Dr Harbison put us on the right path so for me, her shoes can never be

filled. I always say if we win the lottery we're moving to New Jersey. None of

my

friends with healthy kids understand that (or much else). We try to see her

once a year now at either the convention or in NY. On the rare night that I'm

not awake worrying about Willie, I've lately taken to worrying that

something could happen to Dr Harbison. In just over a year, Willie has gone

from 18

lbs to 25+! She is incredible.

Kathy (Jack, non -rss, 6, and Willie , RSS and not in the best of shape

today...Periactin, Zantac)

[Guest guest]

Hi Pat,

So, I gather you do not go to NY..is on GH or will he be?

Are you going to see her then?

Thanks,

Sheryl

> Hi Sheryl,

>

> The thing that is most important to me about Dr H is that she's

sure of

> herself, and she doesn't mince words.

>

> The Drs here in Cleveland " think " they know what they're talking

about, but

> then I repeatedly catch them quoting studies that are years old!

Not one of

> them seems to be " up-to-date " when it comes to RSS.

>

> The Drs here are also rather wishy washy on their decisions, and

that

> doesn't do anything to make me feel secure in leaving medical

decisions for

> solely in their care. Numerous times, over the last 3

years, I've

> had to " suggest " treatments for whatever problems was

experiencing

> at the time. Shouldn't they know this stuff???

>

> From day one, Dr H " told " us what was going on, and what needed to

be done.

> She was firm, concise, and accurate, every single time! She has

NEVER been

> wrong when it came to a problem with , even when he was

here in

> Cleveland, and she was in NY!! That doesn't mean that if I'm not

comfortable

> with what's being said, I wouldn't question her about it, but she

has always

> been more than willing to take the time to explain her train of

thought.

> Something the Drs here take offense to.

>

> If I could afford it, would go to see Dr H every 3 months,

if for no

> other reason than my peace of mind!

>

> Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 "

(83.3cm),

> G-Tube)

[Guest guest]

Kathy,

Just now saw your email..It made me cry!!!

And I agree, we need to keep Dr. H. healthy!!!

Katy

> Hi Sheryl,

>

> we saw at least nine doctors in the Sacramento (CA) area over the

first

> three years of Willie's life. Although one ran the GTube Clinic,

she never saw

> the hypoglycemia. Two were endocrinologists and one a geneticist

and none could

> definitively say RSS. We walked into Dr H's office in NY with a

limp,almost

> -3 -yr-old and were recognized immediately for what we are:an RSS

family. Katy

> was there, looked at Willie and welcomed us. She showed us a

picture of the

> other kids at the convention and there were all Willie's brothers

and

> sisters! Dr Harbison put us on the right path so for me, her shoes

can never be

> filled. I always say if we win the lottery we're moving to New

Jersey. None of my

> friends with healthy kids understand that (or much else). We try

to see her

> once a year now at either the convention or in NY. On the rare

night that I'm

> not awake worrying about Willie, I've lately taken to worrying

that

> something could happen to Dr Harbison. In just over a year, Willie

has gone from 18

> lbs to 25+! She is incredible.

>

> Kathy (Jack, non -rss, 6, and Willie , RSS and not in the best of

shape

> today...Periactin, Zantac)

>

>

>