I have been dealing with Dystonia for the last 2 years and finally found someone to put a name to what is happening to me...Paroxysmal Non-Kinesiogenic Dydkinesias ( PNKD ). I am really struggling with understanding the disease and what to do about it...the meds help for awhile and then the stop. Yesterday I had 225mgs of benadryl after 2 attacks. Does anyone know anything about this disease or have any ideas or support they can offer?? I am 34 with a 6 year old little girl and the mild ones we call "crabby attacks" because my hands get the "claw" look, but the more severe ones scare her ( and me!! ). I was mostly just jerking - it involves any part of my body just depends on which part feels like participating :) but know I have been getting "stuck" in different positions until the benadryl kicks in. Any help or advice would be more than welcome. Thank you.
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- By finndancer
- Posted October 22, 2009 at 12:02 pm · 2 replies
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- By momofchildwithPNKD
- Posted November 24, 2009 at 6:20 pm
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I really would like to talk with you.My 2yr old daughter has been diagnosed with PNKD.Maybe we could compare treatment .We are currently on our way to FL to see her doctor now and she has been wonderful for us.
- By finndancer
- Posted yesterday at 9:23 am
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I am so sorry your baby has PNKD. I can't imagine a 2 yr old having to go through this and being a mom myself I can't imagine watching my baby go through it. I am so glad you have a good doctor ~ how do they treat kids with PNKD? I would love to talk to you and share stories and experiences. Wishing you a good dr visit and Happy Thanksgiving.
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