Re: Jenn & Pat - Arimidex & adrenarche

[Guest guest]

I knew this had been discussed --

This does help - but what is the best route - -

This is all so confusing - should puberty be STOPPED -

Auugghhhhhhhhh - once again, I feel overwhelmed -

What would you do - I know we are talking about 2 different things -

Adrenarche vs puberty - aren't we..........

thanks again -

[Guest guest]

There are pros and cons for stopping puberty. We'll learn at the

convention, too. For boys who often want to be as tall as possible,

most do choose Lupron combined with growth hormone to maximize as

close to their target height.

If a family has chosen NOT to use growth hormone, then there really

is no need to halt puberty or use an aromitase inhibitor, as the

decision has been made that the child and the family are comfortable

with.

For girls, it is a tougher decision. It will involve information

such as when the child started GH, how many std deviations the child

is away from the 3rd percentile, how much time the physician feels

the child needs to " catch up " , what the child's current bone age is,

how old the child is, etc.

Here is an example. A little girl I adore is 10 years old, but just

came to the convention last year and her family is learning

everything. She only just started GH this year, and she is far

below the 3rd percentile (but as is typical for RSS kids, an

incredibly bright and amazing girl). Her parents just found out

that the child has begun gonadarche (puberty). Because the child

wants to be taller, and is actively involved in her GHT; because she

is already 10 years old and just now beginning GH; because she is so

many standard deviations away from even the 3rd percentile; their

physician, as well as Dr. H, clearly recommended using Lupron. If

she had not, the 2+ years of growing she would have left would not

have been enough, even combined with the GH, to get her to the

normal curve. Ironically enough, the little girl had her first

Lupron shot yesterday and it " was a breeze. " Hours later, the

muscle in that leg hurt, but the shot itself wasn't bad. I was SOO

relieved.

I am in the middle of writing about puberty for the Guidebook, and

one of the things I was reading mentioned Lupron and boys, and

monitoring bone mineral content. But I haven't read enough yet.

Something about stopping testosterone (Lupron halts all those

hormones) sometimes decreasing the bone mineral content, as well as

the muscle mass that would sometimes naturally come with a teenage

boy as he produces more testosterone. But again, at the convention

I remember Dr. H making a joke once that her boy patients always

want to get as tall as possible, so they will deal with looking

younger longer; whereas, she joked, the girl patients last until

about 14 when suddenly they want to " have their periods like their

friends. " Dr. H joked that she tells the girls just to lie! Tell

your friends you have your period, they don't need to know any

different!!!

So.... this is a whole new arena for many of us. Some, like Max

Zwain, have been done this road for a while! He used Zolodex (halts

puberty like Lupron) combined with growth hormone. Who would have

ever thought but he is now 5'3 " tall, right Jodi??? Just 4 years

ago, Jodi was worried he wouldn't reach 5'. Incredible kid!

Jenn

> I knew this had been discussed --

> This does help - but what is the best route - -

> This is all so confusing - should puberty be STOPPED -

>

> Auugghhhhhhhhh - once again, I feel overwhelmed -

> What would you do - I know we are talking about 2 different

things -

> Adrenarche vs puberty - aren't we..........

> thanks again -

>