Re: New member lashadarex

[Guest guest]

Hi,

Sorry, this will be a quick post but, please get a new endo! How on

earth can he predict your son will have a reduced quality of life?

If you feel it is in the best intrest of your son to go on GHT see

another endo. I know Salem has a list of endo's in the US

who administer GHT and are familiar with RSS. I'm sure she will

post when she can get to it.

Please take care. My twins are playing on our bed and I'm nervous

I'm going to hear a crash soon!

Saundra Mom to Braeden (RSS) and Delaney 21 month twins

> Hello everyone I'm not really new to the group.I've been getting

post

> in my email ;but this is my first post.My son's name is Andre and

he

> is 5yrs and he has rss.Andre weighs 26 lbs and is 33inches.Andre

also

> has PDD.Which makes our day to day lives a little more

difficult.I've

> tried everything to get him to gain,however nothing has worked.We

> went to see endo. Back in Oct and he asked if i wanted to start

Andre

> on gh.He went on to say that he didn't see any reason to start him

on

> gh,because he felt that Andre would probably have a reduced

quality

> of life.So here I am wondering what to do?Andre may have PDD but

he

> knows that peers are bigger than him,and they tend to treat him as

> though he is a baby.He is very shy around other children and won't

> talk to them.One reason is Andre can't communicate well and he

feels

> like they'll just try to pick him up and treat like a baby.i'm

> thinking about starting him on a gluten free diet to help with the

> autism;however I'm scared that he'll end up losing weight. Which

> wouldn't be good for his over all health. If anyone has any

> suggestions please inform me of them.Thank you all for sharing the

> wonderful information in the post and your stories.God bless each

of

> you and your children.

[Guest guest]

I don't know your name, but I would like to " talk " to you. I have a

son who is now 16 and has other issues besides RSS. He has Tourette

Syndrome, many symptoms of PDD and some learning issues. He also

has health problems, centered around gut dysmotility. Despite all

of this, Max is doing very well in life. He has a great

personality, knows how to take care of himself (with some

supervision from me at times) and is a real " people magnet. " He is

not like " normal " children, if there is such a term, and I, as a

special education teacher, see many PDD issues that we have learned

to respect and deal with and get around.

If you would like, please email me privately at magicrss

@hotmail.com (leave out the space). I agree that you should find a

new endo, too. There is no reason to think that your son's quality

of life will be any less than anyone else's, although he may have a

rougher time learning to deal with things.

Jodi Z.