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Seizures and PWS

Question: How common are seizures with PWS? What type? Recently, my granddaughter was diagnosed as having seizures. The last few times were considered as tonic (also called Grand Mal or a Convulsion) seizures, but she did not jerk as I thought tonic seizures characterized. She only dropped to the floor unconscious with muscles restricted. They did not last very long, but it sure was scary. After some testing, we found out that a characteristic she often has is, in fact, a partial complex seizure. When excited and happy, she will cross her eyes, twist her tongue and move her fingers in a strange way. When this happens, she can be pulled out of it by just saying her name. We always thought this was her way of showing happiness and surprised that this was considered a seizure. Is this common with PWS?

Answer: From our PWSA (USA) medical data base of over 1,747 respondents:

  • Ages 0-5 = 6% seizures
  • Ages 6-18 = 9% seizures
  • Ages 18+ = 13% seizures
     
  • All ages with UPD = 6% seizures
  • All ages with deletion = 12% seizures
  • All ages with imprinting = 3% seizures
  • All ages with translocation = 26% seizures
  • PWS like or type of PWS unknown = 13%

Seizures are less common than with Angelman, and those with PWS who do have seizures do not often have the classic epileptic grand mal seizures. Many just have subtle changes in behavior or just phase out for a while, so many seizures may go undiagnosed.

 

edited: 02/09/2012

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