A physician from the Child and Adolescent Psychiatry department at The Cleveland Clinic contacted me this week, wondering whether I'd help to get the word out of a series of educational webinars to help with psychoeducation for patients and families of youth with epilepsy. The first webinar is next week and will cover the diagnosis of epilepsy. The series will be monthly and includes a myriad of topics that look to be informative and interactive. When I think back on the dark days of the turn of the last century and millennium, I remember the dearth of information out there when Sophie was diagnosed with epilepsy. As a new mother, I was told not to look up infantile spasms because it was too depressing, and the only book I could find at Barnes and Noble on childhood epilepsies confirmed, at least, the depressing part. What's more depressing, though, is feeling ignorant and powerless and isolated. I believe firmly that information is power. I hope that some of you reading out there will be able to make use of these webinars.
Here's the link to access the first webinar:
http://chat.clevelandclinic.org/chatpage.aspx?chatid=1645
Here's the rest of the information that the doctor sent me:
Webinars are a helpful way to extend the reach of knowledge that can be shared with families, especially those living in rural or underserved areas, for whom transportation or distance to a conference with professionals can be cost prohibitive. In families of CYE, even those living
closer to the hospital, other important barriers might impact their attendance at educational seminars, such as the complexity of epilepsy and lack of time when feeling overwhelmed with the multiple responsibilities secondary to the epilepsy.
Throughout each of the three years of the grant, we propose to conduct 10 webinars (skipping December and August, which are typically very busy months for families with children). They will cover 10 different topics (discussed below) and are not designed to be given in sequential in order; therefore, families will be able to attend those that are most applicable to them, fit their schedule, etc. The 10 topics will be repeated for each of the three years
Webinar 1. Diagnosing Epilepsy: The EEG and other tests: This webinar will cover information about the EEG, how it provides information for the diagnosis of epilepsy, how to prepare a child for any EEG testing and the different types of EEGs (outpatient, Ambulatory, Video-EEG). Information about the brain MRI, other imaging techniques and the information that they provide to the physicians. (Dr. Pestana Knight)
Webinar 2. Working as a Team with Your Child’s Neurologist and other Physicians: This webinar will focus on how to prepare for a visit to the doctor, what information your child’s doctor wants to know, keeping track of seizures; medications and side effects, especially in non-verbal children. This webinar will also help participants to clarify what they except of their CYE’s doctor (Dr. Pestana Knight- Dr. Falcone)
Webinar 3. Epilepsy therapies I : daily anti-seizure medications and rescue seizure medications: This webinar will address what every family should know about anti-seizure medications and rescue medications, how doctors choose which epilepsy medication to use and what is new in the field of anti-seizure medications. (Dr. Pestana Knight)
Webinar 4. Epilepsy therapies II : Surgery for epilepsy and Diet Therapies for Epilepsy: This webinar will describe the selection of patients for epilepsy surgery and the different types of epilepsy surgeries. Also, the webinar will cover old and new techniques for neurostimulation (VNS and neuropace). The diet portion of this webinar will cover the types of dietary treatment for epilepsy including the ketogenic diet, the modified Atkins diet and the low glycemic index diet, with particular emphasis on what the diets are, the consequences and side effects related to the diets, and well-known sources of carbohydrates (Dr. Pestana Knight)
Webinar 5. Taking Epilepsy to School: This webinar will cover information about IEPs, (individual education plan) and how to interact with the school system and teachers. An overview will be given of the different forms that help physician and families to exchange information with the school system, including the Parent Questionnaire, the Seizure Action Plan and the Seizure Observation Form. There will be information about how to train the school staff (nurse, teachers, bus drivers, cafeteria and other staff) for a seizure event: when to share and how to share a diagnosis of epilepsy with classmates in order to avoid stigmatization and to encourage inclusion. (Dr. Falcone, Kris Jares LISW, Laura Neece Baltaro Epilepsy Educator
Webinar 6. Teens and Epilepsy: Special challenges for youth with epilepsy. Topics that will be covered are: driving, socializing, drugs and alcohol, and when and how to tell friends about epilepsy; living independently with epilepsy; and parenting a teenager with epilepsy. (Dr. Timmons- Mitchell, Kris Jares LISW)
Webinar 7. Depression, Anxiety and Epilepsy: This webinar will cover why depression and anxiety are big problems for teens, how to recognize, what to do for your teen, how to know when depression and anxiety are more than usual concerns and treatment available. It will also cover depression and the risk of suicide in epilepsy. (Dr. Falcone, Dr. Timmons Mitchell)
Webinar 8. Behavior Problems in Children with Epilepsy: This webinar will help parents distinguish seizures from other behavioral problems or side effects of medications. It also will cover where to get help and the use of ADHD medications in children with epilepsy. (Dr. Falcone, Dr. Timmons-Mitchell)
Webinar 9. Bullying and Epilepsy: This webinar will cover the under-recognized problem of bullying. In particular, it will address the magnitude of the problem, how to recognize the four types of bullying-related behavior, how to help your child if he or she is being bullied: what to do and what not to do, and advocating with schools and families of peers. (Dr. Falcone, Dr. Timmons-Mitchell)
Webinar 10. Coping and Resilience : The last webinar of the series will cover topics related to ages and developmental stages , siblings of youth with epilepsy , building healthy self-esteem; independence and parenting (Dr. Falcone, Dr. Timmons Mitchell, Laura Neece Baltaro)
