A woman I met on the site Twinstuff (a great support site for anyone with twins) sent me this link after she read my latest post about not knowing what "mild" means when it comes to CP.
http://www.canchild.ca/Portals/0/outcomes/pdf/GMFCS.pdf
She lives in Canada with her twin boys, one of whom was recently diagnosed with CP. I know every child is different and when children are young it is especially hard to say what their future looks like, but I was eating this up.
Anyway, I hadn't seen levels of severity of CP classified like this before and thought I'd share...
Help! Wheelchair modifications, anyone?
5 years ago
7 comments:
I just came across that document myself last week - from an online moms group I belong to. It is somewhat "reassuring" to see what their predictive outcomes are. I'm feeling very thankful that Alex continues to progress and would be considered "mild" - stage 1-2 on this scale.
Thanks for sharing.
I'm so glad you have found this to be so useful. I continue to refer back to it probably every few months and it actually gives me hope. Sometimes I get so frustrated because Ben is SO far behind Daniel and it just feels like he'll never catch up. But then I read this and realize that he WILL walk someday. Sure, we don't know what that "walk" will look like...but he WILL.
Cary (The Twinstuff Mommy)
Thanks for this, I'd also never seen it. Max is classified as "mild" though I was never sure what that means. I think it really is more of a definition of his gross motor skills, because in terms of OT and his speech, I think he is not mild at all, he has some pretty significant challenges. But, hey, I'm not knocking the mild part of his challenges.
I would have never guessed parents would like the GMFCS. I liked it immediately upon first seeing it about 12 years ago. I shared it in every pedi PT course I taught. I gave each student a copy and tested them with paper cases. I don't think it has caught-on yet for clinical use in the US. Sigh.
Not to over-rate it, but it is a useful tool for some. I am glad to read it also provides parents some measure of reassurance. Barbara
Barbara - I think the reason parents like it so much is that it actually gives them some idea what is ahead of them. I find it so frustrating that no one will really tell me what Ben will be able / not able to do as he ages. But this system actually lays it all out for us. I love it. Most helpful thing I've come across.
And then there are the parents who rail against dire predictions for their children. Even physicians only know what they know.
Children with CP are not a homogenous group. In the subgroups of children that are most similar to each other, some of the trajectory is known - like the trajectory of children with Down syndrome - or is it?
The GMFCSC allows us to group children according to their, yes, Ellen, GROSS MOTOR abilities so that they can be studied, er, their responses to interventions can be studied.
Not much conclusion can be drawn from comparing the same surgical technique in a Level II child to a Level IV child.
Research comparing children in the same level provides some predictability - for so long as another newer intervention does not come onto the scene. Falling somewhat short of a crystal ball, I am still pleased to see parents gain benefit from this scale. Barbara
Funny you mention the GMFCS. My son's doctor at the Neurodevelopmental Pediatrics use this in their clinics. My boy is classified as a level 4. Interesting stuff.
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