Re: Decision to go to NY

[Guest guest]

Madison has an endo doc at home ( we live in philly) and that doc monitors

her GH but we still see dr. h as a back up and our endo at home understands

completly!!! She's fully supportive. Dr. H is more than just an endo doc she

specializes in RSS and i fully believe there is no other person out there that

understands this syndrom better. To me she's a god sent she saved my

daughters life and for that i will be forever thankfull for.

hope this helps,

Chrissy

[Guest guest]

hi sheryl,

we too had another endo at chop in philly, he started christopher on

gh at the age of 3. christopher grew 3cm in 2months but lost

weight. we took him to Dr H for a consult and she took him off the

gh because of his weight. he had to do caloric catch up growth

first she said. we still stayed with the other endo and did what dr

h said to do, put him on periactin. we saw her again in july at

convention and then this oct. well since last april when she first

saw him and ended hi gh he gained a little over 3lbs and grew a

little over 2 1/2 " !!! he would have never had that growth if we

didnt go to her!! she has now restarted his ght and he will get the

most out of it unlike before. even the other endo admitted in a

round about way that she knows more about rss and it would be better

just to see her. so that is now what we will do. i only live in nj

so the travel isnt far but i think no matter where i lived i would

take him to nyc where i believe he would get the best care!!

jodie c

(nicholas-6 1/2(7 on the 25th!!! YIKES!!)nonrss, christopher-4 rss

27lbs 5oz 36 1/4 " periactin 4.5, ght genotropin .5, ADHD and OCD

possible, assmentry(left side 1cm), johnathon-20months nonrss(my

little " TANK " he is 29lbs 35 " )

[Guest guest]

Hi Sheryl!

I haven't had to make that decision yet, Emerence's drs are pretty

good. You will know when the time is right and will make the best

decision. Dalia is just so adorable I'm so sad we won't see you at

the convention! On the other hand, I am SO SO SO excited the baby is

doing well and he/she will be the reason you won't be there!

, mom to 5 and Emerence 2, 19lb 4 oz 31 "

>

> Hi all,

>

> I was wondering...those of you who visit NY for visits to Dr. H,

> what was your deciding factor? Was it that there were no good

> doctors in your area or just that you feel most comfortable with

her

> even though there may be a doctor in your area.

>

> We are trying to decide if we want Dr. H to see Dalia on a regular

> basis and to manage her GH. We are in Atlanta, and we do have an

> endo, but I just want the absolute best for her...so I'm torn

> between staying here and hoping for things to go right and having

to

> make those frequent visits to NY.

>

> Sheryl (Dalia, SGA, 15.5mos 16lbs 5.5oz, 27.25in, Prilosec,

> Periactin, Mirilax....and baby on the way) - LEVEL II Ultrasound

> shows normal size at 20 weeks - cautious yay!!

[Guest guest]

We have amazing endocrinologists here in Los Angeles. Dr. Mitch

Geffner is truly remarkable (he volunteers with MAGIC too). He has

tons of experience with SGA kids and growth hormone. has

seen him a couple of times, and I refer RSS/SGA So Cal families to

him.

So why do we pay so much money to fly to New York October, January

and April (and Chicago in July)?

Bottom line is that for us, 's treatment became so much more

than just the decision about growth hormone. Although she is of a

mild phenotype for RSS, her gut dysmotility issues are severe

(reflux, and delayed gastric emptying). The peds endos here simply

didn't have the experience with so many RSS/SGA kids that Harbison

had. Dr. H investigates, she gives us answers (and questions). The

other doctors were treatment more her HEIGHT only (which is what

most endos do). Dr. H treats as an entire person. She was

the one that kept pushing me to start speech therapy again; she has

helped us keep 's blood sugar levels stable; she has

encouraged us to keep her as athletic as possible.

That being said, she drives us nuts sometimes! It is her way or the

highway, although I will say she is getting MUCH better over the

last year or so.

If for some reason we have to miss a quarterly visit, we see a local

endo who does all the proper measuring and we send it to Dr. H and

she calculates out L's new GH dosage and other meds. However, in 4

years we have skipped twice, and both times it turned out to be a

disaster. Drs measure differently, and then we get all messed up on

whether or not really grew that little or that much. So now

sometimes we do what we are doing in April. We take JetBlue for

$204 per person (just and I); we fly in Thursday night

around 8pm, we stay at the medical towers next to the hospital at

$165, take the taxi to and from JFK for $100 total; and we have her

visit on Friday around 1pm, and we take the last flight back to LA

at 6:30pm. $665 for the quarterly visit. Insurance pays for the

doctor's visit.

$1,995 for a year's worth of Dr. Harbison. VERY expensive -- but

hopefully not everyone lives as far away as we do. We decided that

there had to be ways that we could save $166.25 a month to save

ourselves the constant worry that the local endo might be missing

something. And yep, each time the credit card bill comes, we

grimace. But it has all worked out (we also used frequent flyer

miles for the first two years before we exhausted those.)

Jenn

>

> Hi all,

>

> I was wondering...those of you who visit NY for visits to Dr. H,

> what was your deciding factor? Was it that there were no good

> doctors in your area or just that you feel most comfortable with

her

> even though there may be a doctor in your area.

>

> We are trying to decide if we want Dr. H to see Dalia on a regular

> basis and to manage her GH. We are in Atlanta, and we do have an

> endo, but I just want the absolute best for her...so I'm torn

> between staying here and hoping for things to go right and having

to

> make those frequent visits to NY.

>

> Sheryl (Dalia, SGA, 15.5mos 16lbs 5.5oz, 27.25in, Prilosec,

> Periactin, Mirilax....and baby on the way) - LEVEL II Ultrasound

> shows normal size at 20 weeks - cautious yay!!

[Guest guest]

I'm SO glad this topic has been brought up-

We are deciding if it's time for us to become

patients of Dr. H. I've printed everybodys

responses and will refer to them when we discuss

this yet again.

I really appreciate everybodys thoughts on this topic.

Thanks!

Team Lapish

[Guest guest]

Sheryl,

I live in South Florida, and for the past 2 years has seen

Dr. Harbison at the convention in Chicago over the summer & then in

December in New York. also sees a local endocrinologist

every 3 months, as well as a host of other doctors. I have an HMO

insurance, but I was able to obtain authorization to see Dr. Harbison

for just my $35 copay. However, I would have paid whatever she

charges for an office visit if it wasn't covered. A trip to NY &

Chicago is expensive, but Dr. Harbison has so much more knowledge

about our kids, & as other have said, she treats the " whole " child,

not just looking at endocrine issues. I wish I had known about Dr.

Harbison sooner. The reason we choose to keep seeing her is that my

son is older (11 years) & his RSS is on the severe side. He wasn't

officially diagnosed until he was 9.75 years old, though I had

suspected he had this since he was almost 4 years old. Sadly, there

were a lot of things doctors here missed, and I think he would have

less problems today had we followed Dr. Harbison's protocol sooner.

That's not to say I wasn't happy with the medical care has

received here... I just think if we knew earlier, things would have

been different today.

Something to remember.... Yes, the costs to go to Dr. H. are high if

you don't live nearby. However, you can deduct medical expenses on

your tax return, including airfare, taxicab/subway fare, and hotel

expenses. Or, if you are driving, you can deduct 0.14/mile. For

those of you who think those miles to doctors offices don't add up, I

drove almost 3000 miles this year for medical appointments! You just

have to remember to keep track of it all. Also, in my area, Spirit

Airlines is usually cheaper that JetBlue. I also found cheaper

airfare to New York between Christmas & New Year's by flying 2

different airlines on the way up and back. December is a neat time

to visit New York with all the holiday decorations. We always

combine a mini-vacation with a visit to Dr. H, especially because we

are spending so much money to get there!

Kim C.

> We have amazing endocrinologists here in Los Angeles. Dr. Mitch

> Geffner is truly remarkable (he volunteers with MAGIC too). He has

> tons of experience with SGA kids and growth hormone. has

> seen him a couple of times, and I refer RSS/SGA So Cal families to

> him.

>

> So why do we pay so much money to fly to New York October, January

> and April (and Chicago in July)?

>

> Bottom line is that for us, 's treatment became so much more

> than just the decision about growth hormone. Although she is of a

> mild phenotype for RSS, her gut dysmotility issues are severe

> (reflux, and delayed gastric emptying). The peds endos here simply

> didn't have the experience with so many RSS/SGA kids that Harbison

> had. Dr. H investigates, she gives us answers (and questions).

The

> other doctors were treatment more her HEIGHT only (which is what

> most endos do). Dr. H treats as an entire person. She was

> the one that kept pushing me to start speech therapy again; she has

> helped us keep 's blood sugar levels stable; she has

> encouraged us to keep her as athletic as possible.

>

> That being said, she drives us nuts sometimes! It is her way or

the

> highway, although I will say she is getting MUCH better over the

> last year or so.

>

> If for some reason we have to miss a quarterly visit, we see a

local

> endo who does all the proper measuring and we send it to Dr. H and

> she calculates out L's new GH dosage and other meds. However, in 4

> years we have skipped twice, and both times it turned out to be a

> disaster. Drs measure differently, and then we get all messed up

on

> whether or not really grew that little or that much. So

now

> sometimes we do what we are doing in April. We take JetBlue for

> $204 per person (just and I); we fly in Thursday night

> around 8pm, we stay at the medical towers next to the hospital at

> $165, take the taxi to and from JFK for $100 total; and we have her

> visit on Friday around 1pm, and we take the last flight back to LA

> at 6:30pm. $665 for the quarterly visit. Insurance pays for the

> doctor's visit.

>

> $1,995 for a year's worth of Dr. Harbison. VERY expensive -- but

> hopefully not everyone lives as far away as we do. We decided that

> there had to be ways that we could save $166.25 a month to save

> ourselves the constant worry that the local endo might be missing

> something. And yep, each time the credit card bill comes, we

> grimace. But it has all worked out (we also used frequent flyer

> miles for the first two years before we exhausted those.)

>

> Jenn

>

>

> >

> > Hi all,

> >

> > I was wondering...those of you who visit NY for visits to Dr. H,

> > what was your deciding factor? Was it that there were no good

> > doctors in your area or just that you feel most comfortable with

> her

> > even though there may be a doctor in your area.

> >

> > We are trying to decide if we want Dr. H to see Dalia on a

regular

> > basis and to manage her GH. We are in Atlanta, and we do have an

> > endo, but I just want the absolute best for her...so I'm torn

> > between staying here and hoping for things to go right and having

> to

> > make those frequent visits to NY.

> >

> > Sheryl (Dalia, SGA, 15.5mos 16lbs 5.5oz, 27.25in, Prilosec,

> > Periactin, Mirilax....and baby on the way) - LEVEL II Ultrasound

> > shows normal size at 20 weeks - cautious yay!!