Re: Scoliosis/early signs of puberty

[Guest guest]

Hi Judy

I justed wanted to reassure you that there is parents here who have

children with these issues. My son is only 4 and although we look out

for the scoliosis he hasnt as yet.

Does your son have asymmetry ?

Im sure you will get some answers soon.

We would love to here more about your son as well, how he has gone on

growth hormone etc..

Welcome to the group.

Jody(mum to Liam RSS 4 and Cameron 7)

>

> I am a new member from England.My son is 10 in March and has ben on

> growth hormone since he was 2.Has any one with a son of similar age

or

> older,encountered scoliosis and or early puberty as it looks like my

> son has both. i would be very grateful for any bits of info. i am

due

> to speak to our Consultant on Monday.

> Many Thanks

> Judy.

>

[Guest guest]

Judy,

I am the mom of Maxwell, a 17 year old with RSS. He had signs of

early puberty at your son's age. The doctor we see here, Dr.

Harbison in NYC, put him on an aromatase inhibitor called Arimidex.

It is a drug for breast cancer, but it supresses the production of

estrogen, the cause of the early adrenarche. Actually, adrenarche

and puberty are two different things, come to think of it. Anyway,

he started on Arimidex first.

When he was then moving into early puberty, he used Zoladex. That

is a small pellet that is placed in the abdomen by a doctor once

every 86 days or so. It worked like a charm. (My only complaint is

the scarring he has from the places where the incisions were made.

He has all these little, tiny marks.) Other people choose to use

Lupron, an injection that is intramuscular and done once every 28

days. I do believe there is a version now that is done less

frequently, but I'm not sure about that.

One thing Max had NOT had is scoliosis or kyphosis. I don't know

much about that one. There are a few kids I know of who have this

condition, however. Some wear a brace. A couple are possible

candidates for surgery. What have you been told?

Did you know that there is an RSS expert in London at the Great

Ormond Street Hospital? His name is Dr. Stanhope. Perhaps

you already know that? He has published a number of studies on RSS

and has spoken a few times at the MAGIC convention in July.

Let us know more about your son. We'd all love to hear about him!

Jodi Z

[Guest guest]

Hi Jody

Thanks for your reply.

We have a brilliant Consultant-Dr Stanhope in London so I know we will

sort Jack out but it is very helpful to hear others stories and

information.

See my messages to kim and Jodi. Jack has done really well on growth

hormone and he has never minded the injections. He is now as tall as

many of his friends and his face has filled out over the years and

although he is very skinny still, this never bothers him. We have a

shorty wetsuit made to measure by a local firm every year for

swimming.

Many Thanks for your welcome

Judy.