My daughter might have Paroxysmal Dyskinesia

[pati_28]

My daughter is 31/2 years old and these days she's been having sudden involuntary movements of the legs and she falls down..these episodes last for a few seconds but continue for 10-15 mins.After doing some research we think she has Paroxysmal Kinesegenic Dyskinesia...been to a neurologist and he feels the same...but hasn't put her on any medication yet.What is the prognosis for this disease?I am soo worried.Also are there any specialists for this disease in the US.I can't seem to find any doctor who specializes in this field.
Please help with any info possible.

Thanks
Pati

[bex276]

Hello there, I know it has been a while since you posted this, but my 21/2 year old has just been given a proabable diagnosis of this.  I am wondering how your daughter is doing now??

[Will_Bmore]

Dr. Hyder Jinnah, Atlanta, Georgia.
As for prognosis from personal experience (although I had an onset of PKD during puberty, age 9, and for me it may only last until I finish my growth cycle, I'm 24 now) my episodes became more frequent until age 10 when I began taking an anticonvulsant agent, Dilantin now as long as I stay on my prescription, I do not have episodes (however they only last for around 5-45 secs and occur when I am in a prone position for a bit and the quickly move). I hope you are able to get treatment for you daughter

[KOhio]

My 7yr old daughter has been recently diagnosed with Paroxysmal Dyskinesia and her symptoms seem to been getting progressively worse. We visited Dr. Jonathan Mink in Rochester, Ny and he was wonderful. He is one of the few doctors out there that specializes in this disorder. Unfortunately doesn't seem like there is much they can do and she just has to live with all these abnormal muscle spasms and lose of muscle control. I have been trying to find support groups or any other information possible--
Please let me know if you know of anything that has been helpful for your daughter.
Thanks-
KOhio