[tri-med] Re: Any info on Dyspraxia?

----- Original Message ----- 
From: "Karen Schuler" <trisomy@xxxxxxxxxxx>
> I took an unusual approach with Alex, it was slow and painful, but it
> worked.

But look at the results!!!!!!!!!!!!

I took a similar path with our Alex, something nobody suggested and I 
created as I gathered info. It was definately a labor of love.....for 
years...with many, many, many hours of work.

Karen, can you believe what we managed to come up with BEFORE THE INTERNET?
Talk about taking swings at the ball in the dark.


> Firstly - start Stephen on long chain fatty acids if you havent already. I
> use Effalex which is no longer available in the US but there are plenty of
> alternatives. I use Effalex because thats the long chain fatty acids that
> were actually studied and found to be effective in treating dyspraxia. 
> They
> are not a cure - but it helps big time. It takes about three months to see
> the full results but they are there.

Jim was my research guy and he fell upon the EFA's. After much looking he 
purchased some (ours in grain based, not fish--which was a personal choice 
based on fish contaminate worries) and began taking it himself. This was 
approx. 12 years ago.

After we started Alex on the EFA's it was, as Karen said, some months and we 
saw HUGE changes in Alex's abilities!
Some days I wonder, if we'd have known about the EFA's at birth and started 
Alex then would he be even further than he is now?

I mean, that first year Alex was a lump of floppy boy who had basically no 
recognizable responses to stimuli (facial, vocal, physical) who couldn't 
suck..........boy has he come a LONG way.

Alex was never diagnosed with Dyspraxia, frankly I'd not heard of it until 
some years ago on this list. But early on in testing we were told that 
Alex's level of understanding (receptive language) was greater by years than 
.....oh shoot, can't remember the word!!!!!! Than his ability to get things 
out......what is the word?????  :0)
ironic isn't it? lol
Opposite of receptive language........

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


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