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:
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)
It is for things just such as this that I am tremendously grateful for the Internet.ReplyDelete
Apropos of nothing, look at how beautiful the cursive writing on the blackboard is. I have read there is talk of discontinuing the teaching of cursive, which seems to be a shame.ReplyDelete
Allison, I've read about that, too, but I can't say I care that much! I have heard that cursive writing is actually good for the brain, but it seems like an uphill battle given the accessibility of alternate communication and computers! Neither of my sons ever writes in cursive anymore -- and while I happen to have really nice handwriting, I'm not sure what benefits it serves!Delete
Yes and WOW! Oh, Elizabeth. You have no idea how powerful your voice is. How far your words reach and will reach.ReplyDelete
You are a blessing on this earth and I mean that.
where is the webinar about cannabis and epilepsy?ReplyDelete
I helped to do a webinar on cannabis and epilepsy over a year ago, Christy! I believe it was recorded and will look for the link. You might not remember, but we engaged Josh Stanley for that webinar. It was not widely received -- those were the dark days!Delete
Your writing illuminates the dark days and how far we've come. It is searing. Hope for a sea change.ReplyDelete
"A rare and catastrophic form of epilepsy" - those were the first words I read when I looked up infantile spasms and I'll always remember that moment. Those webinars sound so much more valuable than my lonely research!ReplyDelete
Yes, Kristen, I remember that line, too. Wasn't it in Freeman's book? I remember, also, that only "8% of children diagnosed with infantile spasms go on to have normal development." I can't remember when I gave up on the 8% and became the 92%.Delete
I am so impressed with how much you have been doing to educate, support, advocate for and empower in the world of epilepsy. I do remember how little there was out there when our daughters were getting diagnosed over 18 years ago. I remember Carlie's neurologist saying, in response to my question as to whether these long episodes of status epileptus were hurting her brain development: "Seizures don't cause any harm to the brain." No explanation followed. Ok, maybe that was his way of saying the harm was already there, but when i think back on it i feel like he was just an arrogant, ill informed narcissistic dude who didnt feel like engaging with a "neurotic mother' asking questions. Turns out, going into status epileptus actually does harm the brain and unfortunately has a very high mortality rate. I quote "The danger of terminal damage to the nervous system, and ultimately the rest of the body, becomes a serious threat. Increased intracranial pressure and relative hypotension occurring with convulsive Status Epileptus will result in impaired cerebral perfusion pressure and exacerbation of neurologic and systemic dysfunction." Funny how i was told her seizures did nothing to hurt her????ReplyDelete
Hi! I am inspired to you for your blogging and also wish to your best of luck. individual education plan We provide special help for parents and child for special needs. To evaluate your child`s special needs you can take our help. Come with us for better education.ReplyDelete
Great read. Great writing. Keep up the inspired work.ReplyDelete
In 2001 our son was in a bike accident that eventually developed into seizures years later. Like you, we experienced a long saga of hope and drama that is remarkable from that day forward. I took the path of starting to work in the healthcare institutions where our son was getting care, since working with docs from the "outside" wasn't acceptable to us. What a wild ride that turned out to be. After being part of Children's Hospital in Denver, I also worked at Cleveland Clinic, so really appreciate your post. The "Clinic" has a certain irreverence about the institution of healthcare that I found refreshing and innovative. But they also have their limits, especially when it comes to stepping out of the boundaries (mythology) of care. So our family moved back to our home in Colorado, partly to ensure that we had ready access to the fledgling cannabis revolution. So like you, as much as we see hard evidence of improvements from such "alternative" forms of therapy as cannabis (including full cessation of seizure activity), the heavy hand of the federal DOJ, DEA, ATF and FDA thwarts the inspirations of hope by parents and researchers alike here in the Rockies. But like I assume you are, we are well beyond anger and disbelief in working with the neurological establishment, and the unfortunate paradigm of big pharma's commercial motivations. As much as my wife and I have dreamed of the possibility of taking some fantasy leap forward to stop seizures for our son, we simply return to reality with poise and commitment everyday, and a step-at-a-time response to seizures as they arrive...for now. And, we never miss the opportunity to change one medical "expert's" mind at-a-time regarding how to treat nerves acting badly. My deep suspicion however is whispering to me - cannabis therapy is trying to teach us something about the underlying mechanism of how the brain works. There's still more art than science at play right now in the minds and hands of our most dedicated neurological providers. Doctors admitting ignorance however, and embracing a burning desire to learn the "truth" about something, is a rare quality. But Cleveland Clinic, and the Case Western Reserve University medical school next door, seems to share that level of intensity and integrity. For us, at least for now, that creates hope. But so much more needs to be done.