Re: Re: CHAT Stanhope & Harbison

[Guest guest]

Hi

thanks a million for all that info - I'm printing it out for safekeeping.

We'll have to think long and hard in a couple of years time to decide

whether to stop ght even for a while.

Thanks again

PS Did Dr Wollman not do a study of this nature where he found that some rss

kids did maintain their growth without ght? Just curious.

Maeve

Re: Stanhope & Harbison

> Maeve - Even Dr. Harbison has been offering to some parents the

> option of stopping the GHT for a trial period. When I asked her

> again about it this past october, she said she would support us in

> whatever decision we wished, but that so far, of the patients she has

> had that stopped after 2-3 years on GH, all had to restart -- but one

> never knows. We will definitely stop 's GH after she reaches

> her " plateau " - where Dr. H shows that she has stopped

> growing " incrementally " and is growing at the normal 2 inches a

> year. When she hits that point, we will try stopping and see if she

> can maintain the 2 inches a year without the GH.

>

> Re the appetite, I have also read in all the studies that there is no

> actual link between GH and appetite. What I have inferred from the

> studies is that the child is suddenly growing, and when a child

> grows, they require more calories and hence eat more -- but that it

> isn't that there actual appetite is more. Many kids on GH have to

> take Periactin still just to maintain enough calories.

>

> And finally, about final adult height, Dr. Harbison likes to use as

> a " target " the height that the child would have reached had they not

> had RSS. However, from some comments she has made, I do think that

> she is realistic that her actual target would be several inches below

> that height. For example, without RSS, our daughter would

> have been about 5'7.5 " tall. Dr. H has that number listed and yet

> has referred to 5'4 " - 5'5 " to me. ANother boy I know who should

> have been 5'9 " tall is tracking to 5'6 " tall.

>

> Myself - I don't know. I have seen personal data on so many RSS kids

> on GH. What I seem over and over again is the same thing - that on

> GH these children seem to grow about 3-4 " a year for the first 2

> years, then 3 " a year for another year or more, before plateauing at

> a new curve and growing the normal 2 " a year or so until puberty. If

> you add up the incremental inches (2 " a year being normal), then it

> seems like an RSS child would grow 4-6 " incrementally, with some

> growing a bit more and some growing a bit less, on GH.

>

> I can't wait to hear Dr. Harbison and Dr. Stanhope speak together at

> next summer's MAGIC RSS convention - and hear how they respond

> publicly to each other's presentations and treatment protocols!!!

>

> I also can't wait for the Pharmacia RSS/SGA study to get finished and

> published. It will be the first U.S. study of GH on SGA children,

> and I think it will tell a lot, and it will continue and we will be

> able to follow these kids. We have many RSS children from our MAGIC

> families in the Pharmacia study (for those of you unfamiliar,

> Pharmacia provides free GH for children in the study - different

> segments of the study are going on across the U.S. - if you are

> interesting in locating a study part near you, email me -- nothing

> funny is going on in the study besides plain ole GH -- except that

> you have to go back every 3 months for the GH to be continued to be

> provided).

>

>

>

>

>

> > Hi Everyone

> > our visit with Dr Stanhope went really well. He was delighted with

> who has been on ght for a year and 2 months and has climbed

> to 25th centile for height (91cms) and 10th centile for weight (27lbs

> 2 oz). will be 3 in January. Prior to ght was not

> even on the centiles for either height or weight. Dr Stanhope said

> that he felt very confident that would respond well to ght

> but was delighted that he had done so well in such a short time.

> Subsequently he is not changing his dose (0.6 mg Norditropin

> simplexx).

> >

> > He has suggested leaving on ght for another year and is

> expecting him to continue to climb to 50th centile or slightly above.

> He would then propose to take him of ght for 6 months to see if he

> could continue to follow that centile (ie normal rate of growth). If

> during this time his growth slowed up he would put him back on ght.

> Dr Stanhope said that some rss kids can be taken off ght and will

> follow the curve without it - others don't. I asked him about side

> effects of ght and he said there were no known side effects but he

> cannot guarentee what may be discovered 15 or 20 years down the line.

> >

> > I also about bone age and early puberty. He said that early puberty

> is not normally associated with rss but to watch out for it. He also

> aims to get to a final height of 5 foot 4 or 5 foot 5 - am I

> right in believing that Dr H aims to reach a final height based on

> parents' heights?

> >

> > I would love to hear anyone's opinion on stopping ght for a trial

> period - does anyone know anything about research done in this area?

> (Did Dr Wollman do a study of this nature?) Also if stopped

> ght would this affect his appetite? I asked Dr Stanhope this question

> and he said that GHT doen't really have any effect on appetite

> although we felt 's appetite did improve when he started ght.

> >

> > I would be delighted if reached a final adult height of 5

> foot 4 - would Dr H be happy with this for her patients or would she

> aim for genetic height? I am just interested in the different ways

> rss is treated.

> >

> > Sorry to have so much in one e-mail. I do like to let you know

> about visits to Dr S as it is interesting to hear how another expert

> treats his patients.

> >

> > Maeve mother of (rss, 34 months 91 cms, 27lb 2 oz, ght) and

> Niall 15 weeks and over half the weight of !

> >

> >

> >