Question:
Male, 20 years old, deletion subtype
My son had a seizure last Saturday where he lost consciousness and was stiff in his body, he then jolted awake and went on to have full body jerking for 7-8 seconds. The whole seizure lasted under 2 minutes, but he took around an hour to be fully aware again.
This was his first seizure. We had tests done such as bloods, an ECG, and a CT scan. All came back as normal. He has been referred to a First seizure clinic. We are awaiting an appointment. Is there anything we should mention that would be important information for the neurologist when we do see them? I feel quite out my depth naturally. I just want to support my son in the best way possible.
Nurse Lynn’s Response:
Even though seizures are not always talked about in medical descriptions of PWS, families and doctors who know PWS understand that seizures happen more often in people with this condition than in the general population. Studies in medical journals show that seizures occur in people with PWS anywhere from about 4% to as high as 26%, depending on the study. These numbers are higher than what is seen in people without PWS. Seizures in PWS can look different from person to person. They are often focal seizures, which means they start in one part of the brain, and in younger children they can sometimes be related to fever.
It is very important to clearly describe exactly what happened during the seizure. Tell the neurologist that your son lost consciousness, his body became stiff, and then he had full-body jerking movements for several seconds. The whole seizure lasted less than two minutes, but it took about an hour for him to be fully aware again. This long recovery time is important information. If anyone else saw the seizure, their description can also help the doctor understand what happened.
You should also share any changes that happened before the seizure. This includes poor sleep, illness, stress, dehydration, or feeling more tired than usual. Sleep problems are very common in people with PWS, including sleep apnea, and poor sleep can make seizures more likely. Be sure to tell the neurologist if your son has ever had sleep studies or uses CPAP or BiPAP at night.
Bring a full list of your son’s medications and supplements to the appointment, including any recent changes. This includes behavioral or psychiatric medications and any past or current use of growth hormone. Some medicines can lower the seizure threshold, so this information is important for the neurologist to review carefully.
If you know your son’s genetic subtype of PWS, share this as well. Research shows that seizures are more common in people with PWS caused by a chromosome deletion than in those with uniparental disomy (UPD). This does not change what happened, but it can help the neurologist better understand your son’s seizure risk and guide monitoring.
It is also helpful to talk about how your son acted after the seizure. Let the neurologist know how long it took him to return to normal and whether he seemed confused, very tired, or different from usual afterward. You should also mention any family history of seizures, fainting, heart rhythm problems, or sudden unexplained deaths, even if his early tests were normal.
Resources:
Epilepsy in Prader-Willi syndrome: clinical, diagnostic and treatment aspects – PubMed
Epilepsy in Prader-Willi syndrome: clinical characteristics and correlation to genotype – PubMed
Do you have a question for Nurse Lynn? Submit your question here:
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.