Re: decided against GHT - info from Jenn Salem

[Guest guest]

Barbara, I commend you for making a decision that is best for your

son and your family. Another family forwarded me your email,

because they were concerned that you may have been given some

misinformation, though.

Final Adult Height. With RSS children, every study completed in the

last 5 years or so (when growth hormone has been nightly and of a

consistent dose) that has followed children to final adult height,

has determined that growth hormone DOES increase final adult

height. There are several factors that mediate the degree to which

final adult height is increased - obviously midparental height being

the largest factor, dose, and age GH is started. But unfortunately,

your physician is incorrect with regards to studies not showing

final adult height results. Prior to several years ago, he may have

been correct. But this is no longer true today.

The other thing is puberty. I want to make sure that you know that

there are only a handful of studies on RSS children and puberty, and

growth hormone. But many studies on the same subject for SGA

children (most of those studies include some RSS children in their

SGA cohorts.) The bottom line is that contrary to earlier beliefs,

RSS and SGA children do NOT appear to enter into puberty at a

statistically significant earlier age than AGA children

(the " normal " age range is quite large though). However, the pattern

of their puberty is VERY different. The pubertal growth pattern for

RSS/SGA children is faster and shorter than the AGA group; the

delayed bone age is quickly eradicated, and final adult height often

ends up shorter than originally predicted.

Also, none of the RSS/SGA studies on growth hormone have shown that

growth hormone therapy has caused an onset of puberty to occur any

earlier than normal. (and there are a lot of studies) Very

important to know. HOWEVER, some recent studies that are more

involved and use double blind designs with control groups have found

that bone age has normalized more with growth hormone. The question

is whether or not as the child's height becomes more " normal " , the

bone age also moves in that direction. This is still being studied,

but important to note, and if a child is on GH, the bone age tracked

regularly.

The fact, however, is that many parents and physicians still choose

to use Lupron or an aromatase inhibitor to halt either selectively

the adrenal estrogen production (use of arom. inh.) or Lupron (halt

all sex hormones) -- this is usually in an effort to maximize

height. If puberty continues in an RSS/SGA child, and the earlier

the worse, then the bone plates will fuse and there will be no

growing left. I know a 10-year-old girl whose parents had decided

against growth hormone for years. They are very health concious as

well, and truly believed that their daughter was perfect no matter

what. However, their daughter changed their mind as she got to be 9

or 10 years old. She came to the MAGIC convention and met some of

the RSS women who had not used growth hormone. They had long talks

as a family. The daughter knew that she would grow up to be

successful like these women whether she was short or not. But she

didn't want to be as short as them, bottom line. Visually, seeing

them, made this girl change her own mind, and then her parents.

However, because she started growth hormone at age 10, her " extra

growing time " was limited, because soon after, her hormone levels

showed that she was beginning puberty (and yes, sadly today age 10-

11 is normal!). So they have also had to start using Lupron as

well. As the mom told me, if they had done GH from age 5, they

probably would never have had to use Lupron, as their daughter's

goal is to get to 5'0 " (her target was 4'6 " ). So again,

different decisions by different families.

The key, as always, is that every family has to make the decision

that is best for them. And recognize that even within one family,

decisions may be changed.

If you have any questions, please email me directly at home as I

have not had the time lately to get onto the listserve.

Salem (, age 10, RSS)

>

> Hi

>

> Just wanted to let you know I have a son, Hamish who is 9 and has

RSS, and

> we made the decision not to give GHT. Our ped endo stated that he

could not

> guarantee his final height would be increased, and also that since

GH could

> have the effect of bringing puberty forward, , all we may be doing

by giving

> GH is increasing his growth velocity now at the expense of

decreasing it

> later by encouraging earlier puberty and hence less growth time. I

have

> noticed that a number of the kids on GH are also on lupron (to

delay

> puberty). And have various other issues which Hamish does not.

Anyway, it

> was a difficult decision but in the end we decided to try the more

natural

> approach, including getting him involved in lots of exercise

(stimulates gh

> production) and eating healthily (no trans fats, no junk food

where poss as

> junk can advance pubertal changes) Hamish is 10 in May and no

signs of

> precocious puberty. He is still small for his age, but not unduly

weak and

> he has shown some catch up growth.

>

> Hope this helps but am aware it may raise more questions than it

answers.

> Good luck.

>

> Barbara

>