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Paroxysmal Dyskinesia

My 21 month old daughter was recently diagnosed with Paroxysmal Dyskinesia.  She has had many "movements" since she was about 5 1/2 months old.  Some have gone away, new ones have started and some stay the same.  She has days, weeks that are worse than others.  

What can we expect in the future?  Is this something that typically goes away, or progresses?  I haven't been able to find much information.  Also, she seems to be at peak whenever we are at the mall.  Does this make any sense?  She is not on any medication at this time.  Thank you in advance.

Megan
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A related discussion, Paroxysmal Dyskinesia was started.
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Anyone have experience with a pale optic nerve on exam and some black spots on the same eye?   thanks
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Thank you for your response.  My dauhgter is only 21 months so I don't know about her having a feeling before an episode.  Her movements do not seem to have any precipitating factors, one doesn't seem to result in the other.  I did ask her Neurologist which category she fell into and he said he'd like to leave the dx as is for now.  She has some type of movement everyday. Thank you again.

Megan
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Dear Megilla:

Sorry to hear about your daughter.  Which type of paroxysmal dyskinesia does your daughter have?  Is it paroxysmal kinesigenic dyskinesia or paroxysmal nonkinesigenic dyskinesia?  The latter is a genetic disorder linked to chromsome 2.  Does your daughter have a "feeling" that she is going to have an event?  The movement in paroxysmal dyskinesia is precipitated by sudden movment or startle.  The nonkinesigenic type is likely not your daughter's type as this is only episodic but they last for hours or days.  This type is made worse by caffeine or alcohol.  Treatment with dilantin or gabapentin can be helpful.  These events are usually life long (at least that is what I remember).  

Sincerely,

CCF Neuro MD
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