Epilepsy 101 and the Cleveland Clinic

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)

Kids, Soldiers and Drugs

Boys in the trenches, World War I

I have a lot of friends whose kids are on psychotropic drugs. These are seemingly normal children, not those with special needs, and their problems range from attention deficit disorder and ADHD to depression and more serious issues of mental health. I'm in no position to judge this, cognizant of the fact that nearly all of those friends are wonderful, careful parents doing what they believe is best for their kids. But every time I read an article like the ones I've linked to below, I wonder. What, exactly, is going on that so many kids are being drugged at ever younger ages? Is this necessary? Is this a cultural shift? Is this a new "normal?" Is this going to backfire eventually? Is this a result of the pharmaceutical/industrial complex? Is it all about money? Are these kids at an advantage or have we created a monster?

I come at this predicament from a very biased position, of course -- while both my boys are free, blessedly, of any kind of drug, my daughter has endured an arsenal of them, and I can honestly say that nearly all the twenty or so that she's been on in seventeen years have been of no use to her whatsoever. In fact, they've probably done more harm than good. We are not an exception to this rule; 30% of people with epilepsy do not have control with multiple drug trials. Yes, 30%. I've grown extremely, if not irrationally, opposed to the seemingly careless way drugs are prescribed to children with refractory epilepsy (epilepsy is considered refractory when you've had a trial of at least two drugs and seizures are not controlled) -- I hear of young children on three and sometimes four combinations of AEDs all the time, still, in 2012 --  and I'm starting to get really creeped out by the numbers of "normal" kids being prescribed psychotropic ones as well.

I remember one neurologist years ago telling me that taking anti-epileptics was like peeling back the scalp and tissue underneath and pouring medicine over the entire brain -- a neuro-bath, I believe he described it back in the ancient 1990s. That meant the entire brain was affected by the drugs, and I do remember looking at the insert (that lovely piece of paper written in infinitesimal writing listing side effects ranging from irritability and bruising to constant laughter and death) and feeling like I was drowning in terror. I have never gotten used to giving her this shit. Never. I suppose I would have should her seizures ever have been controlled. I might have even been grateful. But even now, the drugs that Sophie takes are so new no one really knows what the hell they're doing to her, beyond the dizziness, headache, stomach cramping and tiny bit of seizure control. Years ago, when I first began exploring alternative treatments for Sophie, I asked her neurologist at the time whether it was all right to give her Chinese herbal teas that I'd gotten from a very trusted Chinese doctor. I don't see why not, the neurologist said in her clipped British accent, They couldn't be any worse for her than the stuff we've been cramming down her throat for the last decade. Poor little chip.


Evidently, more than 100,000 American soldiers are currently on psychotropic drugs. Yes, that's right. More than 100,000 of them, for issues like attention, depression, psychosis, etc. I suppose the justification is the constant stress and terror many of them have endured during more than a decade of war in Iraq and Afghanistan. We're asked, all the time, to honor our troops, to admire them for their bravery, their sacrifices in ensuring our freedoms. It makes me sick that the powers that be are loading them up with drugs so that they can do their job. And some of these soldiers have had alarming behavioral side effects -- outbursts of extreme aggression, psychosis, suicide. Have we replaced the shell shock of old in an attempt to "help?"

The image of the brain, bathed in chemicals, comes to mind.

I hope some of the brightest and best minds are trying to figure this out -- outside of commerce. My biased gut that feels like I'm poisoning my daughter every time I give her doses of Vimpat and Onfi tells me that something is just not right about any of it.

Articles referenced: Growing Up Drugged by Caitlin Bell Barnett, Salon
                               A Fog of Drugs and War by Kim Murphy, Los Angeles Times

While I'm away,

Vincent Van Gogh, Starry Night, 

please listen to this -- all of it.



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