And this is why I call it Neuromotor Dysfunction.
I am finally writing my paper. It’s a slow painful process but one I really need to do. Now not to bore you with the details the subject matter is a piece of research that I took two years to carry out with children and cerebral palsy. All but one child in the end actually had what you would classically call CP. However I am (trying my hardest) to stay away from the term. I’m doing this knowing that I will get pulled up on it in the peer review process. “Why do you reference CP children but not in your measures and discussion?”. Two simple reasons. One parent was slightly not keen on the term (to say the least) and this.. which is nicely summed up in Surgical Management of Spinal Deformities By Thomas J. Errico, Baron S. Lonner, Andrew W. Moulton. You can find it online here at Google Books.
Cerebral Palsy thus becomes the 800-pound gorilla that gets attention. Do you doubt this? Go into any hospital and ask where the CP clinic is. Somebody, very practiced, without looking up, gestures at the posted sign with the arrow. Then see what happens when you ask where the clinic for metachromatic leukodystrophy is. If you persist in your descriptions, you eventually get asked whether that is anything like cerebral palsy. With a sigh you say “Well yessss, sort of.” That same sign with the same arrow directs you. You can hear, from behind you, in a perturbed whisper, “Why didn’t you just say that in the first place?”
It should not be surprising then, that in clinical practice, there is a coming together of those who share similar needs of those who share similar needs of resources and, to a lesser degree, a history of early onset. Scattered through the defined disorders of perinatal onset that are referred to as cerebral palsy are found victims of near drowning, unsuccessful hanging, bubble gum aspiration, electrocution, burst cerebral aneurysms, post-neurosurgical tumor resection, head traumae from automobile accidents, and so forth. Even excluding these, almost 40% of the core group will be found to have an inborn metabolic or genetic anomaly.
[and later on..]
Designating cerebral palsy in this way is akin describing stars by their magnitude - how bright they look from here. It helps you point, but it tells you little about the thing itself. As with comprehensive star catalogs, guides to the constellations of infantile neurologic syndromes are weighty and ever subjected to uptake.
Note to self: File this under my to-be-written book titled “Diagnosis Murder. The cure or the enemy within?”.
