Dr Stanhope visit - trial period off ght

November 21, 2002

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 !

November 21, 2002

Maeve,

Dr. H. does base her projected height on the height of the parents.

According to her, Max should grow to be 5'6 " . HA!!! At this point,

if Max makes it to 5'2 " , we would be thrilled.

Jodi

November 21, 2002

Maeve,

Dr. H. does base her projected height on the height of the parents.

According to her, Max should grow to be 5'6 " . HA!!! At this point,

if Max makes it to 5'2 " , we would be thrilled.

Jodi

November 21, 2002

Dr Stanhope visit - trial period off ght

MAEVE WROTE:

He said that early puberty is not normally associated with rss but to watch

out for it.

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

Hi Maeve

Congratulations on the great growth!!!! I copied a couple of your questions

because I have had discussions with my endo about these two items.

First my endo told me RSS was not associated with early puberty either. I

was surprised because on the list we tend to see that. I wonder if it's

something else (besides RSS) that is triggering it in some kids.

Also my endo said GHT has no effect on appetite. However, the improved

growth rate will make the kids naturally want to eat more. So that being the

case, if continued on his present growth rate without GHT, logical

would follow that he is still growing and therefore would still eat more to

compensate for the extra calories needed in the growth.

Non RSS kids will increase their appetite when going through a growth spurt

as well.

Just my thoughts. Congratulations and I do enjoy hearing from another well

known expert on RSS. Share his thoughts any time.

Thanks

Debby

November 21, 2002