Labels (but not the bad ones) and Cerebral Palsy (but not really) - February 26, 2012

Cerebral palsy is a great big blanket term that simply means that there is damage to the brain in relation to muscle control, more or less (oh you can totally Google it, you know that). Person A can have CP and person B can have CP and they can be affected COMPLETELY DIFFERENTLY in absolutely every way. Even now, when I tell someone that my daughter has CP without her being present, I suspect they imagine a child in a wheelchair, unable to hold her head up. That's what I thought of for the longest time, and when the neurologist bluntly told us that my daughter had CP I simply couldn't understand it since she didn't look like what I thought it meant. I learned quickly. (I still think back to that moment, by the way, and I remember VERY CLEARLY how I did NOT PROCESS that statement even though I kind of expected it but was also rather convinced that surely he'd say Oh She's Totally Fine You Worrywart!...Also, he diagnosed her within like 10 minutes, and now I get that but it was like "Wait, what? You asked her "Where's mommy" and she didn't look at me because she's more interested in this office and...wait, what?) (And then I waited for the MRI before telling anyone because still...waiting and hoping...knowing that kids with CP sometimes have clear MRIs with diffuse damage that doesn't show up so the MRI wasn't really going to change what he said...and still...waiting and hoping....but I digress...)

So it turns out that my kid has the rare flavor of CP. The 5-10% of everyone flavor. Most people with CP present as spastic - stiff - hypertonic. Mine is floppy, flexible, hypotonic. (And some of her tone is apparently normal now, I think.) Just a few days ago her physical therapist, who we've been working with for about two (three?) years now and who has been in therapy for many, many years mentioned to us in an offhand way that my kid is the first one she's worked with who is "like this." No wonder my girl has stumped her PT time and time again with what she can and cannot do.

Sometimes I've wandered into support groups for CP and everyone has a fancy medical name for their condition or their child's condition (or their friend/relative/acquaintance/whatever). Spastic diplegia. Spastic quad. That sort of thing. We don't have that. Early on, an amazing developmental pediatrician (that I wish we could still see, but insurance...money...blah blah barf...) said "Just say mild. She has mild cerebral palsy. That's all." And now we don't even go to many doctors/specialists because...there's not much medically that can be done anyway. (Botox? Surgery? Won't help. At least not as far as any specialist nor my research has taken me. Just therapy. Lots and lots of therapy. And time.)

A blog post from Shasta on Outrageous Fortune shone a bit of light on my quest. Extrapyramidal. OK. Maybe it's that. My kid's damage is in her basal ganglia. That fits. But I don't see any of the random movements that the definitions I found online include - she doesn't appear to have dystonia or chorea, at least to my untrained eye. Her movements lack finesse but they always seem, to me, deliberate. She does fling her hands around, but usually it's out of frustration or annoyance or anger. When she's calm and happy, she can focus on a task, and she knows "safe hands" means to put her hands down or behind her back, and she does so with ease (when she feels like it). She can point. She has written her name a few times. She loves to draw. Maybe it's...mild...whatever that means... (After I wrote this, I asked her PT - she said that a) I was mispronouncing extrapyramidal - oops! - and b) she thinks my kid is athetoid, which I'd thought before, so we'll go with that...)

Kids with CP are all different, even when they share the exact same diagnosis and fancy words. It goes with the territory. All that is great and well and good, but I still feel like I'm no closer to figuring out what exactly is going on with my daughter. And I don't know why it matters so much to me - but it does. And I am trying to accept that perhaps I won't find out ever. Maybe she'll find out herself someday. Maybe when she's older she'll tell me she doesn't give a shit or she'll become a scientist who researches it to the Nth degree. I don't know. That's up to her. For now I just keep searching - then stopping - then searching again.