[tri-med] Re: Hello

Hi Callie,

We live in the UK and when my son was diagnosed at 2
weeks old they told us t8m was so rare that there were
only 100 cases world wide. The only info they had was
some old horrendous medical book which they
photocopied and gave to us. Even the genetisist said
she had only ever heard of one other in the UK and
that there was very little info. 
Because my son was desperatley ill when born because
being 3 months prem all the doctors would do is say
well maybe its due to a t8m complication, they came up
with all sorts of things - like maybe his rib cage was
not growing. I ended up in contact with endless
doctors around the world. As it worked out a simple
barium swallow showed that my son had a malrotation of
his gut and it was corrected and he has been great
ever since.
I guess what I am saying is go with your instinct and
if you find a good doctor along the way then stick
with them. 
This site you have found has been a real life saver
for me and I have learnt so much.
Another good organisation is called UNIQUE, it is all
about rare chromosome syndromes and has alot of
relevent info about t8m and other families as
contacts.

Katy. son t8m. age 3.
--- mcmuni@xxxxxxxxxxxxx wrote:

> Thank all for sharing info on cellulitis.  We were
> very lucky to catch it early.  She is on antibiotics
> for a week.  Hopefully that will clear it up fast! 
> We go to her pediatrician tomorrow for her 6 month
> check up, so that will provide us a chance to have
> it checked again.
> We live in Sebastian, FL.  It is on the east coast
> about an hour south of the orlando - cape canaveral
> area.  Does anyone else live in florida?  
> 
> This is something you all have probably already
> gotten used to, but I'm astounded by the fact that
> the local geneticists don't even know much about
> T8M.  I don't think they've ever had a T8M patient
> before.  Is that common in other states / areas too?
>  Has anyone found a doctor with lots of experience
> with trisomy?  If so, is it worth traveling to see
> them occasionally? 
> 
> Callie
> Mom to Cade 5 and Maiya 6months T8M
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 



      ___________________________________________________________ 
Want ideas for reducing your carbon footprint? Visit Yahoo! For Good  
http://uk.promotions.yahoo.com/forgood/environment.html
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: