[tri-med] Re: trisomy 13 - Nan

>I didn't know about Dr Grossman and neither does regional. 
>I think she keeps her patients she has had since childhood. 
>My problem was having kids too high functioning when they 
>were little and now needing more help that they are adults.

Nan,

But Philina wasn't her patient when she was little!  She didn't
even start treating her until she was what, 19 or 20?  When I
called for the Moya Moya consultation, they said we had to see her,
even though we had a referal to Nespeca, because office policy 
was she treated ALL the older patients.  Did Skogland finally retire?


Fawna, mom to Philina 22 yrs (PT6p & Moya Moya Syndrome)
Research Coordinator: Tracking Rare Incidence Syndromes 
(TRIS) project - We are currently enrolling all varieties of 
Trisomy 13 & 18, living & deceased, for the pilot phase.  
To include your child's data and help update the medical 
literature please see: http://web.coehs.siu.edu/Grants/TRIS/
And to add a link for your Trisomy child's personal web page 
please see: http://www.livingwithtrisomy.org/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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