[tri-med] Re: T-18 help

Our grand daughter Tess who is 11 and a half 
years old, was on viagra for about 18 months. It 
did not appear to make any difference to the 
pulmonary hypertension, so they did a heart 
catheterisation to see if she would be 
"responsive" to drugs to control her pulmonary 
hypertension. She was non responsive. So there is 
no reason to give her (Tess)  the viagra, which 
can have some side effects that our kids can't 
tell you about eg bad headaches.

BTW you can not post pictures to the list. You 
will just have to send them to anyone who asks personally.

At 09:15 AM 23/09/2008, you wrote:



>Hi!  My name is Tara and I have a 9½ month old 
>daughter, Olivia, with full T-18.  I would 
>love to ask you a question.  Olivia has just 
>been diagnosed with Pulmonary Hypertension.  
>She was born with a PDA.  No other 
>problems.  The PDA has now basicaly closed on 
>its own.  I would just like to know your 
>thoughts on the PH.  The doctor seems to think 
>"this will be what gets her".  He felt it 
>would just get progressively worse. Â She is on 
>viagra now.  I am just wondering if you have 
>any insight or things you might have done 
>different.  I do not want to look back and wish 
>I could have done more.  I just want to make 
>sure that I do everything I can!  Thank you so much for your time!
>
>Regards,
>Tara Torian
>
>PS... here is a picture of my precious Olivia.
>
>
>
>View full size
>
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
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>- Release Date: 22/09/2008 4:08 PM

Jocelyn, wife to Frank, loving Nanna to Tess with 
Trisomy 18, age 11 years, and four other beautiful grandchildren,
  living in New South Wales, Australia
. 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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