I have a 4 month old with SS also. He got it from his fathers side as well.
His eyes seem good at the moment but he has low frequency hearing loss. He also
has popping joints. His bones crack all the time. I dont know what to do about
that. I have put him in an intervention program but I am still learning about SS
too. My husband has only been diagnosed a couple years ago.

Jacqui
carole pilgrim <sillypilly51@...> wrote:
Hi

How good is it to have someone to chat to in the UK about SS as most people I
have found are from Aus or USA and their way of treating people id so different.
I have found a site that I printed loads from but I was going to buy the book on
SS have you read it or even heard about it I think its from the site you
mentioned.
We are in the early stages of stickler so I am not sure what to expect as
everyone is so different, I no that my son is very short sighted and needs
glasses now but I have been told he is to young for them (just 7 months). I have
read that a baby in the US was given a contact lens but I guess that the UK is
not that far advanced in Sticklers as these places seem to have far more people
with the syndrom.
Anyway thanks for taking the time to mail me back I think I could learn lots
from you as you are old hat at SS and as you said the docs seem to no very
little about it and expect us to help them.

Thanks again

Carole

----- Original Message ----
From: Amy <amwshamws@...>
To: sticklersyndrome@yahoogroups.com
Sent: Friday, October 27, 2006 6:19:08 PM
Subject: [Stickler Syndrome ] Re: New and looking for support

--- In sticklersyndrome@ yahoogroups. com, "carole" <sillypilly51@ ...>
wrote:
>
> Hi I have a 5 month old little boy who has been dignosed with stickler
> syndrome.
> I have been told that it runs in his fathers side of the family but I
> have very little to do with them so I am trying to find ouy more about
> this syndrome from the internet. If antone knows of any good sites
> please e-mail them to me as all the helpI can get would be welcome.
>
> thanks
>

Hi Carole I am Amy, the best thing I would suggest is just use some
good search engines and put Stickler syndrome in and you should have
lots of sites come up. the one I use most here in the UK is
www.stickler. org.uk

This site also has lots of fact sheets you can print out to give to
doctors or teachers when the time comes as I often find I know more
about the condition than most of my doctors and they have found the
sheets most useful.
If you have any mre question feel free to email me to chat.

Amy

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