Several years back, I co-authored a book with Mary Martiros (https://www.amazon.com/Our-Own-Words-psychogenic-non-epileptic/dp/1516836480). The book was the brainchild of Mary who had read my Guide to PNES (https://www.amazon.com/Psychogenic-Non-epileptic-Seizures-Lorna-Myers/dp/1492881414/ref=sr_1_1?keywords=myers+pnes&qid=1574603180&sr=8-1) and wrote me to say “I liked your book, but what is missing in it is the patients’ voices, this is all from a professional’s point of view.” And I thought to myself, “By gosh, she’s right!”
The project you will read about below, is similar in its approach: it aims to help us hear the voices of youth living with Psychogenic non-epileptic seizures (PNES). It is so important to hear directly from the persons who are living with PNES day to day because it has the potential to teach us about things we never even considered from a professional’s perspective.
The study has been approved by an Institutional Review Board and is part of Andrea Tanner’s Ph.D. dissertation. If you are a youth between 13 and 18 living with psychogenic non-epileptic seizures or a parent of a child diagnosed with PNES, you may want to consider contacting her to hear more about this study and to make your voice heard.
The post below was written by Andrea:
Fourteen years ago, I met my first student with psychogenic non-epileptic seizures (PNES). Despite having a great group of friends and fairly supportive team of school personnel, his school experience was greatly impacted by his condition. He missed many days of school and left early most days that he did attend. School administrators were kind but questioned the legitimacy of his diagnosis. Several years later, I met another student with PNES. He was not so fortunate to have supportive friends or school team. Classmates and school personnel would comment about his “fake” seizures as they watched him seize on the classroom floor.
As a school nurse, meeting and working with these students and their families was a defining moment in my career. The different school environments and internal struggles for each student made me want to do everything I could to support students with PNES and provide an improved school experience for any future students with PNES.
Eventually, I realized that I knew far too little about research to jump into researching ways to improve the lives of students with PNES. So, last year I began the journey of obtaining a PhD. My research work for this education program focuses on exploring the experience of students attending school (k-12th grade) with PNES. Much work has been done to identify connections between certain school or academic factors and PNES. However, few, if any, researchers have talked directly to students about their experience and published their findings. I hope to make students’ voices heard.
That is where you might come in. If someone you know is between the ages of 13 and 18 and currently attending school or has attended school in the past while having a diagnosis of PNES, would you consider sharing my information? If a parent/guardian gives permission and the student agrees to participate, I can set up a 1-hour video conference (similar to FaceTime) to chat with the student and gain valuable insight into the school experience and its impact on academic success and quality of life. I can be reached at andrtann@iu.edu or 812-657-0560 for more information.
You can also watch Andrea directly on this brief YouTube video: https://www.youtube.com/watch?v=kIJhlusmV2A&feature=youtu.be&fbclid=IwAR3ht-PljCwyaGfuTDdwds7yA4TWmXh3611_5s_3jJ2NwacUMRR9OdtBhpA
We are struggling with poor quality care. Health professionals that do care exist but they are the minority. Children and adults alike are being abused due to ignorance(lack of knowledge) or by old knowledge such as the word Pseudoseizures in which is a godforsaken word and philosophy.
Jennel Clarke
Yes, you are right. Much is needed for things to improve. Research studies such as this one, and some very vocal clinicians and researchers are working to change this for the better. An active and vocal PNES community is also needed.
I left my email in the mail field… did you need a postal mailing address? I am Keri, parent of K, who was Dx with PNES a year ago and is completing her senior year in high school now. So so much to say about the good and unfortunate scenarios. Love that there is more research and data gathering. I’m a believer there are more common threads (physiologic or even medical/physical) that “we” have evidence of.
Contact the researcher directly at: andrtann@iu.edu or 812-657-0560
I am interested in learning more about the study. I have a 15 yr old daughter diagnozed with pnes and it is really a struggle.
Please contact the researcher directly for more information: andrtann@iu.edu or 812-657-0560
My daughter Hannah who is 15 has now been diagnosed with PNES. Cognitive Behavioural therapy is one of the most common forms of therapy but she has been in that for years prior to diagnosis and she does not respond to that. We have been told that there is no medication for this and we truly want to help her overcome this. Please let me know any and all information you can provide. With two sets of twins both 15 she is really the odd one out with this and her epilepsy as well.
Regards,
Vanessa
I suggest you go to http://www.nonepilepticseizures.com where you can find information about treatment modalities for PNES and other resources. These links might be especially useful: https://nonepilepticseizures.com/epilepsy-psychogenic-NES-information.php
and https://nonepilepticseizures.com/epilepsy-psychogenic-NES-reading-materials-webinars1.php among others. Your daughter’s treatment team may also benefit from this book: https://www.springer.com/us/book/9783319551210
Wishing you and your daughter the best.
Incredibly sad experience when our 14 year old daughter was diagnosed last year. We later found out she had intracranial hypertension from a drug reaction to growth hormone therapy. Unfortunately, once a doctor labeled her, no-one considered any other diagnosis. When I reached out to our local NAMI, below was the response:
Tina,
I am not familiar with PNES. We deal mainly with the major mental health disorders. I have attached our information sheet so you can see what we offer. All NAMI classes, groups, and presentations are free of charge.
Please let me know if we can help you further.
Sincerely,
Jill
Jill Mann
NAMI Greenville, SC
2320 E. North St., Suite L, Greenville, SC 29607
Phone 864-331-3300
My 16 year old son was just diagnosed yesterday with having PNES. These seizures started for him 3 weeks ago after having a heat stroke. With in that time we have had 3 ER visits and the last one on Wednesday resulted in him being transferred to Loma Linda Children’s hospital. We were lucky enough to get answers right away that were confirmed with an EEG. I am currently trying to find him a support group where he can connect with other teens who may be experiencing the same thing.