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I was finally diagnosed with pkd and a few weeks later I found out I was pregnant. My Dr quickly took me off PHENYTOIN and put me on Keppra it helps but not as much as Phenytoin, but is it much safer for the baby. I am in my third trimester now and I'm getting very nervous for delivery I seem to have more symptoms when my braxton hicks act up. My Dr is having a hard time finding and documentation of what happens during deliver with people with PKD. Has anyone experience child birth with PKD and if so how was the delivery?
Posts: 1 | From: New Mexico | Registered: Jun 2009
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HI there, I did not have the symptoms of PKD/PNKD when I delivered as the disorder started about 2 years later (28 years ago). I don't know how long you have had the symptoms, but wanted you to know that my movement disorder specialist related to me (actually saw a video of the woman--during pregnancy and 6 months later) that there is a dyskinesia that is associated with pregnancy and goes away after the birth. Anyway, didn't know if that could pertain to you or not, but just wanted you to have the info. Twistergirl
Posts: 22 | From: Washington State | Registered: Feb 2007
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I actually don't think my story will help much, but here goes. Short background: I was dx with (familial) PKD 16 odd years ago now. My symptoms are bilateral, though migrating as I have gotten older. Mainly my arms, left leg, and mouth are affected now and my movements last approximately 30 seconds. Without medication, I could have 20 to 50 movements a day. My movements are easily controlled with 100 mg tegretol 1-2 times per week. ... from reading other people's stories I have concluded that my movements are relatively mild... more annoying I guess.
I have had two children. I was fortunate enough to have an occupation that I could go off my medication even before getting pregnant. With both pregnancies, the movements declined dramatically in frequency by the second trimester (this has also been documented in the literature in a case study). Dealing with the movements until I was able to get pregnant was the annoying part. I found with labour, with the excitement and adrenaline I think, that I did not have any movements that day(s).
Post baby, I did not require much medication at all until about 3 months ago. I was seriously thinking that the PKD was finally going into remission (also documented in literature for individuals with familial PKD)... but no, it is back with the resumption of my menstrual cycle Posts: 48 | From: Canada | Registered: Jan 2005
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