Re: CHAT: 1st DR H. visit today

[Guest guest]

Jodie - Be prepared at CHOP. A lot of times we get " well, who is

this doctor? " I usually give the answer that she has more than 130

current RSS patients in her caseload, is board certified, is an

assistant professor of pediatrics at Cornell Weill and is a

pediatric endocronologist at NY Presbyterian (although switching to

Mt. Sinai).

Most children on GH are either growth hormone deficient or s

or some other issues. Weight isn't the issue for them as it is for

us -- although they growth a lot in height, their weight also seems

to grow.

Our children need EXTRA growth hormone and EXTRA calories, far more

than the normal child needs to grow. If you as a parent struggle to

get enough calories into your child before GHT, and suddenly the

child is DOUBLING their height velocity, which requires double the

weight gain... you can see the trouble one can get into pretty quick.

I am glad that it sounds like you liked Dr. H, and that you were OK

with what her suggestions were. I can't wait to meet you all at the

convention!!!

> hey everyone!!

> well we had our first visit with dr h today!! it went pretty well

> actually. the only thing is she wants us to stop his ght for

awhile

> and have him take the periactin for catch up weight gain!! he

> actually grew 3cm but his weight didnt change and she is afraid of

> it not keeping up with his height growth. she also didnt like that

> high dose that chop had him on for the gh. it is .6 and she said

it

> is a very large dose for his weight. we will see her again in

july

> at convention for a 3 month follow up and see how his weight is.

she

> will decide then when to restart the ght.

>

> i am glad we finally had our appt with dr h today (we called back

in

> dec. and couldn't get the appt until april) the only thing is i

wish

> we would have had it before going to our endo in feb and making

the

> decision to start the gh. our dr never said anything about him

> having to catch up with his weight and if we wouldnt have gone to

dr

> h he wouldnt have been getting the full benefit from his ght!!! i

> know i shouldnt beat myself up over this, but i feel bad that we

> didnt get all the facts and our dr at chop isnt informed enough

> (especially since some people told me what their opinion was about

> chop and the care of our kids by them) we have an appt there in

may

> and i cant wait to see what he says when i tell him what dr h said.

> sorry so long!!

> jodie

> (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ADHD(possible)

> periactin(starting friday) ght genotropin .6 (putting on hold for

> awhile), johnathon-10m nonrss)

[Guest guest]

hi jeanine!!

it works as an appetite stimulant, thus making our kids want to eat

and hopefully get more calories into them to gain weight. at least

that is what i have been told.

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " periactin, johnathon-

10m nonrss)

[Guest guest]

started on periactin when he was just over 1 year old.

Judith, Steve, (RSS) and (non RSS) 4 year old twins