I'd like to throw my $.02 in on the dystonia diagnosis.  My 4 year old son
has a combination of hypertonicity and hypotonicity (spastic and loose), in
addition to fluctuating tone.  He has secondary dystonia (which means it is
brought on by something else, such as oxygen deprivation, as in his case).
So he is considered to have a diagnosis of mixed CP, with dystonia.  Although
the brain damage occurred at birth, the dystonia did not show up right away.
He was probably close to a year old before it was evident.  Before that, he
was just tight in some places, and loose in others.  When he is asleep, he's
completely relaxed and loose.  When he is awake and tries to move his body,
then the dystonia kicks in and the lack of coordination of the muscles is
evident.  In addition, he has very jerky movements and tremors.   When he
tries to move, he cannot separate many of the muscle groups necessary for
independent ambulation, balance, speech, etc.   I consider the dystonia
problems much worse than the spasticity or hypotonicity, because it affects
his entire body.  He has been on a medication since May for Parkinson's
called Artane, which has helped considerably.  His movements are more
precise, and his speech is better.  I have yet to see another child with
exactly his presentation of symptoms either.

Sorry to be so long-winded, but I thought it might help.

Kimberlee, mom to Stefan (4, CP) and Alex (9)