[tri-med] Re: Hello

----- Original Message ----- 
From: <mcmuni@xxxxxxxxxxxxx>
> 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?

Your preaching to the choir on this one! lol

When Alex was diagnosed in 1988 we were told by the geneticist that he was 
'the only one alive in the world'.
There was no Internet at the time and medical literature was VERY old.
But even 20 yrs later it sounds as if the stories remain the same for the 
rare trisomies.

>  If so, is it worth traveling to see them occasionally?

Our geneticist told us that we never needed to come back as there would 
never be anything they could 'do' for Alex, nor would there ever be more 
info for us. This was.......1989.

Since it cost us $175 to see the dr each time we opted to take their 
suggestion and never go back.  :0) Plus it was nearly an hour each 
direction. All factors in our decision making process.

Some folks continue to see their geneticist just to 'prove' to the dr that 
kids to survive and thrive and allow the info to be out there.

Others opt to not see the dr because it's one less specialist/appointment 
they have to deal with in their very busy schedule.

YOU won't gain any info from your geneticist, at least it's that way 99% of 
the time.

Michelle mom to Alex (20, partial trisomy 14 mosaic) and Molly (16)
MichiganUSA 


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

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