I agree with you, Joanne, the article is somewhat deceiving. Anthony has moderate spastic quad CP too. Yet he is definitely not a candidate for SDR. He is one who uses the tone in his upper legs for his mobility (in a Pony walker). Plus his upper body is more affected that his legs. He has decent trunk and head control but again uses his tone for this. CP varies so much from person to person as you all know. :-) I was surprised that all 3 boys were considered good candidates. Also, I was wondering about the intensive therapy afterwards. Can't imagine fitting in all that extra therapy TIMES 3!!! Guess you do what you have to. I hope it helps those boys long-term. 

I also kind of resented the implication of the article that the CP needed to be "fixed" somehow. I wish that people would make the distinction between using therapies and procedures to improve quality of life versus looking for a "cure." My child has CP -  like he has blue eyes. Just part of who he is. I wouldn't want him to be anyone else now (Can't say I felt that way in the beginning , but I do now). If he can benefit from a therapy or an intervention, as Alex benefitted from the SDR, then great.  That's how I see it anyway.

Yvonne


>>> [log in to unmask] 02/26/02 03:21PM >>>

Saw and read it. I personally thought it was a bit
deceiving. Let me say up front if I had to repeat any
surgery Alex's has had for the benefit it gave him it
would be the SDR. Having said that, reading the
article made it seem like any easy "cure". It doesn't
tell you the degree of CP that  the triplets had. It
all just said that were spastic. SDR works best with
kids who have mild spastic diplegia. It also must be
determined whether the child moves using their tone or
if they have underlying muscle strength. If they use
tone to walk the SDR would be contradicted because it
takes the tone away. It is also not recommended for
people who have had prior lower limb surgeries. Third
it doesn't say anything about the long,intensive
physical and occupational therapy that is required
after the surgery. It makes it sound so simple but it
also doesn't take into account how cp can affect the
other parts of your life. Alex has visual problems
that are more involved than just 20/20 vision. He also
has problems because he lacks side vision as well as
distortion of depth. There are so many times he raises
his foot to step and seems so surprised that the
floor isn't where he expects it to be. Alex is an
unusual SDR candidate in the sense he is considered
moderate spastic quad. Walking still requires a very
supportive walker with a special brace call a SWASH
brace. What the SDR did for Alex was give him such an
increase in sitting balance that he no longer needed
his hands to help himself balance. Prior to the SDR he
was labeled profoundly MR because he had to hold on to
the table to keep from falling over and couldn't use
his hands to perform tasks. 2 1/2 years after the
surgery the same kid is in a regular first grade
classroom, doing regular first grade work( with some
modifications for the CP..a spelling test he can use a
magnetic alphabet and board to do the spelling...he
works on handwriting as a separate issue). As with
anything that sounds really good further investigation
i warrented. It is a wonderful surgery for the
properly selected patient and when done with a highly
quailified nuero-surgeon.
Joanne


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