Epilepsy in a Nutshell

Brain Awareness Week - Epilepsy Webinar

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Thu, 08 Mar 2012 18:20:00 +0000

Dear all.

Brain Awareness Week is March 12-17th and the Ontario Brain Institute has planned a series of virtual events. For details, see www.braininstitute.ca/blog

In particular, there will be an epilepsy webinar on March 14th from 12pm-1pm.

If you are interested in taking this in, please RSVP to events@braininstitute.ca

Hope everyone is well.

Kirk.

Ontario steps toward a strategy for comprehensive epilepsy care

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Fri, 11 Nov 2011 21:02:00 +0000

Dear all,

A very important development has caused me to emerge from my cocoon of silence. The following message pertains specifically to Ontarians, but those living outside of Ontario should try to support this initiative as well as it will benefit you in time.

Below is a message from the Director of the University of Toronto Epilepsy Research Program.

"There is an important chance for better epilepsy care in Ontario, and I am writing to ask your help and support. We have been lobbying for improved epilepsy care for years. Now it seems that it may be within our grasp.

A high-powered clinical committee has been negotiating with the Ontario Health Technology Advisory Committee (OHTAC). OHTAC has prepared a recommendation to the Provincial Government for a comprehensive new program of Care for Drug-Resistant Epilepsy in Ontario.

The OHTAC document has been posted and OHTAC has asked for public comment, which can be submitted to their website: OHTACinfo@hqontario.ca. (Deadline, November 30). It is important that we provide that comment. The proposal may stand or fall on the basis of public input.

Below is an Executive Summary of the OHTAC Recommendation. The complete Recommendation can be accessed here.

EXECUTIVE SUMMARY
The new program would include: 1) regional epilepsy centres for clinical care; 2) the development of provincial guidelines for epilepsy care; 3) enhanced training of epilepsy clinicians, including neurologists, surgeons, dieticians, EEG technologists, neuropsychologists and social workers; 4) telemedicine for centres in the North; 5) “wait time” standards for access to care and tests; 6) a provincial data base; and 7) an expert advisory panel, which would include both clinicians and representatives of not-for-profit epilepsy advocacy groups.

Please take the time to input – even briefly – to OHTAC during the next three weeks. Following this first step, we hope you will provide input to your MPPs.

Thanks everyone!

Kirk.

Further Rationalization for Comprehensive Epilepsy Care

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sat, 03 Oct 2009 15:05:00 +0000

Well, it has been a long time since my last post. Hopefully people haven't stopped checking in!
I apologize for the hiatus, but having a baby means no sleep, which means no mental energy for blog posts.
My son is peacefully napping now, so I'm stealing a moment to post on something that is important to me: comprehensive epilepsy care. Well, not comprehensive epilepsy care specifically -- but some rationale for why we need comprehensive epilepsy care.

Epilepsy is a complex, multifactorial disorder
Sure, there may be some open-and-shut cases where patients are seen by a family physician, given a first line anticonvulsant drug, become seizure free and go on to lead a relatively "normal" life.

For more than 40% of individuals with epilepsy, however, this is simply not the case. There is generally a long list of drugs that are tried over several years with limited success. Many of these individuals do not get to see an epileptologist - someone who specializes in the diagnosis and treatment of epilepsy.

To ensure that everyone, at the very least, has an option to see a specialist -we need a formalized system whereby patients are referred to see a specialist after they fail one or two anticonvulsant drugs. This would be a critical element of a comprehensive epilepsy care system -- a formalized primary care physician engagement strategy.

Uncontrolled epilepsy costs the healthcare system a lot of money
The comprehensive epilepsy care centres in some American cities (http://www.naecepilepsy.org/find.htm) are a great example of how we can improve the quality of care, improve the quality of lives of those living with epilepsy all while spending less on epilepsy care!

In 2001, the Canadian Institute of Health Information estimated that the total cost of epilepsy (in Canada alone) was nearly $800 million dollars. The direct costs were nearly $100 million dollars, with half of that for hospital care and the remainder for physician care and drugs. The major expenses, however, are not directly related to the cost of epilepsy care -- these are the indirect costs of epilepsy, such as lost productivity. These costs were nearly $700 million dollars! These are the costs that tend to be associated with individuals living with uncontrolled seizures.

I'm a lover of analogies - so here we go. If you have a problem with your car you take it to the mechanic. If the issue is complex, the mechanic may be able to narrow the problem down to your transmission, but he may not be able to pin-point/solve the problem. You can go visit a series of other mechanics who may or may not know more about your complex issue. The costs of these repeat visits add up. Or, maybe you decide to simply park the car and rent a car or quit work so you don't have to travel. All which compound your expenses and don't solve the original problem. Finally, you could take your car to a transmission specialist who, through training and experience, can likely pin-point the issue and what the best options are to remedy the problem.

Of course, in Canada we as patients don't have to worry about the cost of the specialist vs. the generalist -- but the government does in its attempt to best use the tax payer's dollar. So an argument that seeing the specialist is the most economical while ensuring the highest quality care is an essential component to proposing change in the way we currently conduct our health care services.

This is the argument that we are currently formulating. It is fairly complex, but there is little doubt in our minds that increasing access to specialized epilepsy care will cost less over time while improving the quality of care and, in the long run, improving the quality of life for those living with epilepsy.

So, stay tuned and get involved in your local epilepsy chapter. Our case for comprehensive epilepsy care is strong, and soon we will convince others that this is the only way to move forward.

Those are a few thoughts on a cloudy Saturday morning.
I hope you are all well.

Kirk.

Reference: The Burden of Neurological Diseases, Disorders and Injuries in Canada.
Found here: http://secure.cihi.ca/cihiweb/products/BND_e.pdf

Epilepsy Awareness Month

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 23 Mar 2009 16:36:00 +0000

Sorry for the long hiatus! In the past 5 months I've graduated with my PhD, started a job, moved into a house and had a baby.
So, as you can imagine, life has been a bit hectic.

Despite this business, however, I wanted to get a post out before March, Epilepsy Awareness Month in Canada, ended. That's right, March is Epilepsy Awareness Month. There are a few really exciting events taking place across Canada and here in Toronto.

First is PurpleDay (March 26th). Click the link to read all about it, but it's going to involve some really exciting events which will undoubtedly increase epilepsy awareness. For example, in Toronto, the CN Tower will be lit up purple. How fantastic is that? The (once) tallest freestanding building in the world lit up in purple to grab people's attention and let them know that epilepsy affects them and their community.

Another exciting note - SACEC has been asked to participate in an information session at Ontario's Provincial Parliament to help inform and educate Parliamentary Members on epilepsy! What an exciting opportunity to raise epilepsy awareness amongst those who hold the purse-strings for health care services. Here's is more information on that event -- please get involved if you can!

Help Raise Epilepsy Awareness at the Ontario Legislature!
On Tuesday, March 31st, 2009, epilepsy agencies across the province have been invited to participate at an information session for Ontario Members of Provincial Parliament (MPP). Medical professionals specializing in epilepsy care, leading epilepsy researchers, and epilepsy community organizations will be speaking with elected representatives about improving epilepsy care in Ontario.

Please help us with this initiative by ensuring that your MPP attends this event. Call or send an email to your local representative and strongly encourage him/her to attend the Purple Day Splash - Information Session on Epilepsy at Queens Park.

To help you find your MPPs contact information, click on: http://fyed.elections.on.ca/fyed/en/form_page_en.jsp and enter your postal code. Once you have your electoral district, search for the contact information of the MPP in your riding using the following link: http://www.ontla.on.ca/web/members/members_current.do?locale=en&ord=Riding&dir=ASC&list_type=all_mpps

As a representative of your riding, your MPP is responsible for meeting with constituents to help find services to assist them in different ways, and attend and support community events. An MPP may be able to help with and present a petition to the Legislature concerning a specific problem or issue in the riding, such as improving Epilepsy care. We hope that you will urge your MPP to attend.

Summary of "Purple Day Splash - Information Session on Epilepsy" Details:
Date: Tuesday, March 31st, 2009
Time: 9:00am - 6:30pm
Location: Queen's Park, Committee Room #2

Given all of the exciting events happening (these are just a few of the many) - it really feels like this year could be the turning point for epilepsy in Canada -- where it is no longer a disorder buried in the shadows. Please do what you can to get involved and make this year's epilepsy awareness events the biggest yet.

Kirk.

A Few Good E-Resources

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Fri, 28 Nov 2008 11:25:00 +0000

People are taking a more active role in their healthcare
More than ever before, people are starting to educate themselves on their health issues. When a diagnosis of epilepsy is made, many people begin researching immediately. "What is epilepsy?", "how did I get it?", "what is my 'new life' going to look like?", "is a cure available?", "what might my treatment look like?", "who is the best at treating epilepsy in my province/state/region?", etc. Of course, these are all things that you can find out from your physician, but many of us still want to find out for ourselves. Education is empowering, and it's nice to be able to go into the doctors office with some knowledge of your condition so you can ask more pointed questions.

The internet can be a good resource to learn about health issues, but watch out!
The internet has become an increasingly powerful resource for learning about health issues. Type "epilepsy" into google and you'll get over 11 million "hits". It's important to note that not all electronic resources (so called "e-resources" or "e-tools") are trust-worthy sources. Not many of us questioned the credibility of books. We pretty much assumed that if it was published, then the author was probably a credible source (which is a bit of a fallacy in retrospect, but I won't go down that rabbit hole today). On the internet, however, anyone can write about whatever they want, making it very difficult to find accurate, trustworthy information. I mean look, even I can write a blog!

Some tips on how to find trustworthy internet resources
Here are some tips to help you navigate through the e-quagmire. First, there are many epilepsy organizations that have very trustworthy sites (e.g., Epilepsy Toronto, Epilepsy.com, Epilepsy Foundation, etc.). The medical content of these sites is often written by an epileptologist.

Another reliable online resource for epilepsy information is the website of a hospital (e.g., SickKids). This week I received an email from the Cleveland Clinic about their new online resource centre for individuals living with epilepsy. The Cleveland Clinic is one of the largest research institutes in the United States. It is also considered one of the leading medical centres in the U.S.

Currently, the Cleveland Clinic is promoting their online epilepsy clinic. A few highlights of this site are:

Epilepsy Medical Guide
Pediatric Epilepsy Support Group
Webcast Series "Living with Epilepsy"

Blogs, as much as it pains me to say this, are often good for hearing peoples' opinions -- but they are not always trustworthy in terms of the accuracy of content. I try to keep this blog as factual as possible, but I also try to keep it highly informal.

Tidy summary
So there you have it. Keep learning as much as possible about epilepsy. Keep asking the tough questions until you get an answer. Just be careful which sites you let influence your opinion- the sites of epilepsy organizations and hospital epilepsy clinics tend to be best. Also, check out the Cleveland Clinic site -- it looks very good.

As always, if there is a topic you'd like me to post on-- then please let me know. Email me or post a comment below.

Onward and upward.

Kirk.

Classic Migraine Headaches

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 27 Oct 2008 20:45:00 +0000

I am a migraine sufferer. I was about 16 when I started to have these crazy visual field disturbances that were followed by a crippling headache, but I didn't know what was going on. I didn't really talk to anyone about it and just sort of hoped they would go away. Depending on the time of year and amount of stress in my life, they only happened every few months, so it didn't seem bad enough to go to the doctor (ah, the foolishness of youth). Then in my 2nd year of university I was reading "Fundamentals of Neuropsychology" (a great text by Kolb and Whishaw) and I saw a picture of the strange pattern I saw right before my headache started (shown below). This visual pattern appears small at first but it grows in size. It is very annoying. Then it disappears and the headache starts.
I read on and learned that I have "classic migraines", which are vascular headaches (unlike normal headaches, which tend to be caused by muscle tension in the head and neck areas). Classic migraines start (most often) with an "aura". The aura is the sensory disturbance that comes before the headache. There are different kinds of aura, but mine is a visual aura, called a "scintillating scotoma" (pictured here).

From: Nature Reviews Neuroscience 4, 386-398 (May 2003)

There are a few theories on what causes the scotoma. The first one I read about is the "vascular theory". This theory states that blood flow to the visual cortex of the brain is decreased, which causes the disruption in vision (i.e., the scotoma). After a short while (maybe 10 - 60 minutes) the blood flow is restored and vision normalizes. Not only is blood flow restored, however, but it is greatly increased. This increase in blood flow causes the stretching of blood vessels in the brain and this is what is thought to cause the headache pain. Remember, brain cells don't have pain receptors, but blood vessels do. When they stretch, they cause a lot of pain.

There is another theory on what causes the aura. It is called the "spreading depression" theory, and it seems to be the most well accepted theory now-a-days. Spreading depression is a seizure-like event that slowly spreads over the surface of the brain. It leaves neurons silent ("depressed") in its wake. This lack of activity in the neurons, when spreading depression affects the visual cortex, leads to the visual field disturbances. This spreading depression also causes the release of nitric oxide from neurons. Nitric oxide is one of the body's most potent vasodilators (something that causes blood vessels to dilate). [Aside: this is why patients with heart disease are often given a form of nitric oxide to take during an angina attack -- it opens the blood vessels and stops the angina]. The dilation of blood vessels causes the pounding headache associated with migraines.

Many of the treatments for migraine (e.g., the triptans - like sumatripan, aka Imitrex®) work by binding the serotonin receptors on the blood vessels, causing the blood vessels to constrict, therefore stopping the pain caused by vasodilation.

I have taken triptans a few times. I know that those who have frequent, extremely painful migraines like to have a stash of triptans around. However, I'm fairly lucky insofar as my migraines aren't terribly frequent (1/month, on average) and I've developed a fairly good system to live with these nasty headaches without having to buy the expensive drugs.

First off, I can lessen my chances of getting a migraine by controlling my stress levels, drinking less coffee, avoiding moving from really dark rooms to really brightly lit rooms and avoiding those annoying, flickering fluorescent bulbs. Other triggers are out of my control, however, such as big swings in the weather.

Another trick I've learned is to use the aura to my advantage. The aura, although incredibly annoying, warns me that I'm going to get a really bad headache. The gives me 15-45 minutes (usually the duration of my auras) to get some pain killers in me. I discovered the miracle of liquigel ibuprofen (very fast acting). As soon as I get my aura, I'll take a few of those puppies and I find the pain isn't nearly as bad. In general, the bigger my scotoma (i.e., the more messed up my vision gets) the worse my headache will be. If it's really bad, I'll take my liquigels and I'll go home and try to sleep it off in a dark room. This isn't always possible, but it is a sensible way of dealing with the pain. Generally, after a migraine I'll have a sore head for a day or two. Coughing, sneezing, fast turns, etc. will cause my head to pound, but it's manageable.

I know this post wasn't about epilepsy, but there is increasing evidence suggesting a link between migraine and epilepsy. Is migraine a form of seizure? Certainly, the "spreading depression" theory suggests that it is. Fortunately, however, migraines do not lead to a loss of consciousness and can be managed fairly well with drugs/lifestyle changes. Whether or not you need to take prescription drugs chronically largely depends on the frequency and severity of your migraines.

Also, there are many kinds of migraine. I've only discussed the "classic" form here. Perhaps I'll post about the others later.

Have a great day.

Kirk.

Parenting a Child with Epilepsy: A Journey Continued

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Tue, 07 Oct 2008 15:08:00 +0000

We have been fortunate to have a guest poster-- a mother of a young boy with epilepsy, who is now on a special diet to help treat his seizures. Here is the third installment of her thread called "Parenting a Child With Epilepsy: A Journey".

Part lll
"Our son has started school. For those people who are parenting a child with epilepsy, you know how significant a change that can be. All of a sudden someone else is responsible for my child for a number of hours a day. And that person, while caring and responsible, is also in charge of many others, each of whom have needs different from my child with epilepsy. Our story is a very positive one, however. Our school has stepped up, researched, and allowed us to literally bury them in information. They listen, absorb, ask good questions and implement the strategies and therapies we suggest. Our son’s teacher is fabulous, unflappable and very capable. She treats him like all of the other children, expecting him to extend himself, maybe not in the same way as his classmates, but in a way that will promote personal growth and work toward attaining the goals we have worked together to set for him. She works in close contact with us, so we don’t worry and so we know how he is handling this new routine.

Our son has suffered a lot of negative behavioural side effects from his anticonvulsant meds: he is on two different drug therapies. We have added a third therapy this fall in the form of a Low Glycemic Index diet, or a modified Atkins diet for seizures. What this entails is lining up a diet where his calories consist of 70% fat, 20% protein and 10% carbohydrate. This was recommended by a paediatric neurologist as our son does get seizure relief from his anticonvulsants and so the Ketogenic Diet is considered too rigorous. While we work with a dietician for ideas, and advice, the diet is driven at home by the parents. We work hard to balance, calculate and coordinate to create meals that are appetizing and maintain the level of extra fat in his system. This is a difficult task, and is taken on only in the best interests of our son, to reduce his anticonvulsant medication, particularly the one linked closely to behavioural problems and suicide. The school, has also taken up this challenge, and has placed an aide with our son while he eats, in order to encourage him to eat everything he is sent, and therefore retain the 70-20-10 balance he needs. They have someone assigned to him on recess supervision to ensure he doesn’t eat food from someone else’ lunch. They have made sure that classroom celebrations no longer include food, so they don’t exclude one class member. They have lists of food no-no’s for Sam posted in the classroom, so a substitute teacher knows not even one carrot stick is okay. Mostly they ask us when they are unsure, and work hard to make sure we feel comfortable sending him and that he is schooled while he is there. We could ask for nothing more. I have spoken with parents whose children are on a diet for seizures, and they had to involve politicians to rally the school board in order to get cooperation from the school for their child’s special needs. We are so fortunate, our experience has been the opposite of that.

Our local epilepsy educator came to the school last week to give information on epilepsy and seizures, and to help the teachers in our school understand our son’s needs and the needs of other students who may have a seizure disorder. This was an optional seminar, and yet every teacher in our school came, stayed and asked good questions. I was overwhelmed by their show of support. They wanted to know our plan for seizure response, they want to be prepared to help. The woman who came to give the seminar offered to come back as often as we feel is necessary and will be returning later in the fall to speak to both Kindergarten classrooms about seizures and epilepsy at the children’s level. Our teacher is specifically bringing both classes to school that day (they go every other day in rural Saskatchewan) for this specific purpose, which makes a lot of extra work for her.

So as we enter into this season of taking stock, and thankfulness (all celebrated with food of course) we are most grateful for where we live, and the people that make up our school system. We could be in no better place."

Expressions of Courage

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 06 Oct 2008 13:33:00 +0000

Art is a great medium for expression. Sometimes it allows us to express things in a way that we otherwise couldn't/wouldn't.
I just found out about a great site called Expressions of Courage, where individuals living with epilepsy can submit their artwork. Have a look!

I hope you are all doing well.

Kirk.

Are Drug Companies Evil?

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Thu, 25 Sep 2008 13:51:00 +0000

A bit of a loaded question, I realize. My short answer is: "no". For many reasons (some valid, others invalid), people love to hate drug companies. As in any business, a few companies have done bad things to taint the image of their sector. We are seeing this now in the USA with the financial sector (e.g., Fannie May, Freddie Mac, etc.). We have all heard the horror stories of the drug company that sold unsafe drugs to third world countries that wouldn't pass health regulations in Canada/USA. But, let's not throw the baby out with the bath water.

Do we need drugs?
Obviously, the answer is "yes", unless you hold some twisted, Darwinian "only the healthy should survive" attitude. Otherwise, we've all been sick, and we've all benefitted from pharmaceuticals. I think we can all agree that some drugs are essential. If you are going into cardiac arrest, you don't want someone to prepare you an herbal tea. You want to be taken to a hospital to receive a drug that will restore the function of your heart and allow you to live long enough to make wiser lifestyle choices. The same is true with epilepsy. If you are in status epilepticus then you want to receive a drug that will stop your seizure as soon as possible. So, drugs are important and we need them.

What are some of the problems with drug companies?
One of the major problems behind drug companies is that they are held accountable to their shareholders (i.e., they need to make a profit). The average drug costs almost $1 billion US dollars to develop. This means roughly $1,000,000,000 of expense from the time you have the idea of developing a drug until the time that drug is available at your local pharmacy. Much of this expense occurs during drug testing (i.e., determining the safety and effectiveness of that drug). That is a LOT of money.

To protect their investment/intellectual property, drug companies patent their drugs for about 20 years. This allows them to sell that drug exclusively to try and earn back their investment. This is why new drugs are so expensive. Once the patent has expired, then other companies can make "generic" versions of the drug and sell it for much cheaper as they won't have spent the hundreds of thousands on research and development. So, the company has 20 years to make back their billion bucks. Another complication is that many of the drugs that a company tries to develop end up failing at some point along the testing process. They may prove toxic in animal studies. They may prove toxic in clinical trials. They may lack effectiveness in clinical trials. They may even prove toxic after they have passed all trials and the drug "makes it to market" (i.e., it's available at your pharmacy). This recently happened to Merck's COX 2 inhibitor, Vioxx®, which generated heart problems in some patients. This means that a company can spend hundreds of thousands of dollars and then be forced to abandon the drug. Yikes!

This puts tremendous financial pressure on drug companies. As a result, many drug companies have stopped/slowed the development of new, novel drugs needed in the treatment of serious, life-threatening diseases. Instead, most drug companies tend to focus on modifying existing drugs to make them less toxic. Also, because they need to worry about the "bottom line", many drug companies have focused simply on developing drugs that are used very commonly for non-life-threatening health problems-- which in my opinion, are the drugs we need the least. These are drugs like the proton pump inhibitors used to treat acid reflux or drugs used to treat indigestion. These are huge money-makers as they are so commonly used. They are drugs we take after a meal without even thinking about it. Although these drugs may be important to those who suffer from acid reflux, they rank low in the overall hierarchy as compared to the new drugs that we need to treat aggressive forms of cancer, for example.

So, drug companies have the ability to develop new drugs that are required for serious, chronic diseases, but they tend to be focusing on drugs that will bring them the most profit. This is understandable from an economic perspective, but less understandable from the perspective of someone who has 10 seizures a day and can't find a drug that helps.

What are possible solutions?
One of my more radical ideas is that the Government should be in charge of all drug development (instead of corporations). This would mean that there are no shareholders, in the formal sense. Of course, the public would then have to fund the drug development process, but it would eliminate the need to make profit. The Government would simply seek to regain the cost of the drug development, not the extra bit to put profit into the pockets of shareholders and pay CEOs huge salaries. Obvious disadvantages to this would be that drug development would occur much more slowly and there would be less diversity in the drugs that would be developed. This is just a way to develop new, important drugs for chronic, serious diseases that lack adequate treatment, without financially strapping those that need them.

The current system uses Insurance Companies to help buffer the cost of drugs, so that a $100 prescription might only cost you $10-20, depending on your plan. Of course, if you can't afford a plan/have no plan, then you are faced with the horrible choice of financial health vs. physical health. Something that is unimaginable to me, but something that many face everyday in the USA. Here in Canada, we are fortunate to have a National Health Care Plan that ensures that you will get many drugs for free, providing the drug in question is covered under the Drug Registry. Unfortunately, not all drugs are covered, which means you could end up having to pay for it under your insurance plan, or even out-of-pocket.

What about nutriceutical companies? A slight tangent"
Why don't the nutriceutical companies face the same degree of public distaste as drug companies? They are in the same business of selling drugs- just prepared and marketed in their galenical form. Let's be honest-- if you are taking something (e.g., a tea, a pill, a plant, a vitamin, etc.) that works to improve your health, then you are taking a drug (unless it is a placebo). "Vitamin C" is ascorbic acid. The active ingredient in white willow bark is acetylsalicylic acid (the pure form is sold as Aspirin®). The active ingredient, which is thought to yield mild antidepressant effects, in St.John's Wort is the chemical hyperforin. All this to say, if it works and isn't a placebo, then it is a chemical. The rest is a matter of marketing and a case of the wolf in sheep's clothing. What's scary, is that nutriceutical companies aren't (yet) as tightly regulated as the drug companies--> so they are allowed to sell chemicals without all the rules/regulations that drug companies face. When you buy 200mg of ibuprofen (e.g., Advil®), then it is 200mg. When you buy white willow bark, it's unclear and unregulated as to how much of the active ingredient (i.e., acetylsalicylic acid) is present. This is a problem.

Concluding thoughts
Well, the system isn't perfect. Not all drug companies are perfect either. Unfortunately, the system is set up to prioritize profit over "let's make drugs for diseases where they are most needed to save lives". That's what spawned my crazy idea of having Government in charge of drug development, but that has obvious down-sides too.

In the end, we need drugs. They are important in our health, and for many, they are required on a daily basis to keep us alive (e.g., those living with cystic fibrosis, cancer, heart disease, etc.). So, it's good that we have drug companies making these drugs for us.

Nutriceutical companies are no different from drug companies. What's scarier than that, is that they aren't regulated the same way that drug companies are -- and they should be! They also prioritize the bottom line, profit. That's why you are paying $25 for your bottle of fish oil.

I hope this has been helpful. I know some people feel very strongly about herbs/nutriceuticals being healthier than drugs. That said, this isn't a religion or belief system. These products can be studied by the cold, objective eye of science, so we aught to have a more objective point of view on them. Any chemical you take that changes the way your body works, be it a drug, a "nutriceutical", should be treated the same (i.e., read up on it, study whether it will interact with any drugs you are currently taking, tell your doctor that you are taking it, etc.) as it also has the potential to help you as well as harm you. Even foods can do this. Garlic, for instance, is full of sulphides (diallyl sulphide, for example), which act to inhibit drug-metabolizing enzymes in our liver.

Food for thought.

Kirk.

The Mysterious "Seizure Threshold"

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sun, 21 Sep 2008 17:34:00 +0000

In the basic science realm you often hear epilepsy researchers refer to the "seizure threshold". Experimentally, this refers to the minimum stimulation required to trigger a seizure, be it an electrical stimulation, a chemical compound that stimulates the brain, an external stimulus such as a strobe light or noise, etc.

Every brain has a seizure threshold. Everyone can have a seizure if their brain is over-stimulated. Students have been reported to have "exam seizures". These are seizures as a result of lack of sleep, too much caffeine (or other drugs), high stress, etc.

Individuals with epilepsy, however, are thought to have chronically low seizure thresholds (i.e., their brains are more susceptible to being stimulated above their seizure threshold). I've made this simple illustration to show the concept of seizure threshold.

Anticonvulsant treatments (drugs, ketogenic diet, etc.) are thought to elevate the seizure threshold. The GABA drugs [e.g., phenobarbital* (Luminal®), primidone (Mysoline®), topiramate (Topamax®), diazepam (Valium®), tiagabine (Gabitril®), vigabatrin (Sabril®), clonazepam (Rivatril®)] raise brain levels of the inhibitory chemical GABA. This makes the brain less excitable. The sodium channel drugs [phenytoin (Dilantin®), carbamazepine* (Tegretol®), felbamate (Felbatol®), lamotrigine (Lamictal®), levetiracetam (Keppra®), pregabalin (Lyrica®), topiramate (Topamax®) and zonisamide (Zonegran®)] make neurons fire more slowly, therefore making the brain less prone to seizures. The ketogenic diet also makes the brain less excitable, although the mechanisms (i.e., "how) are less clear.

The concept of seizure threshold helps us understand both "why" and "how" the brain enters a seizure. Better understanding of what causes the seizure threshold to change may help us understand why the brain enters into a seizure.

Have a good day,

Kirk.

Epilepsy in a Nutshell Wordle

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 15 Sep 2008 21:15:00 +0000

My friend Peter Jamieson writes a blog about Ultimate Frisbee (a sport I spend too much time playing) called The Cultimate Opinion. He introduced me to Wordle, a program that surveys a website or list of words and generates a word cloud. Above is the Wordle for this blog.

The History of Diet to Control Seizures

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 15 Sep 2008 20:57:00 +0000

Here is a copy of the presentation I gave at the 2008 SACEC/UTERP Advances in Epilepsy Care Conference. It outlines a brief history of the use of diet in the treatment of seizures. Other talks given by experts in the field can be found on the SACEC website.

Questions? Comments? Something you'd like me to post on? Don't hesitate to contact me.

Kirk.

Society for the Advancement of Comprehensive Epilepsy Care

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 14 Jul 2008 13:24:00 +0000

The Society for the Advancement of Comprehensive Epilepsy Care (SACEC) and the University of Toronto Epilepsy Research Program (UTERP) are hosting an Advances in Epilepsy conference this summer. The morning session will include advances in epilepsy care talks, while the afternoon session will include advances in epilepsy research talks. The conference will feature speakers for persons with epilepsy, their families, and epilepsy researchers.

Please join us and invite family/friends to attend as everyone is welcome!

Date: Saturday, August 16, 2008
Time: 9am to 5pm (Registration begins at 8:30am)
Location: Hart House Debates Room, University of Toronto
Admission: Free! Refreshments and a light lunch will be provided!

Please click on the program (left) for details.

Ketogenic Diet - Potential Mechanisms

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Tue, 08 Jul 2008 01:33:00 +0000

OK, so I've mentioned that I study the anticonvulsant effects of the ketogenic diet. I thought I'd review some of the more popular theories on "how the diet works". Although the exact mechanism isn't clear, we know that shifting the body's metabolism toward using fats (instead of carbohydrates) plays a critical role. This causes numerous adaptations in the body, which may contribute to the diet's anticonvulsant effects. I apologize if some of this gets "thick"- it would take a 30 page post to describe everything in non-scientific terms. Plough through and let me know if I can clarify anything, or if you have any general questions.

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KETOGENIC DIET: PROPOSED MECHANISM OF ACTION

The Brain Lipids Theory
Clinically, the ketogenic diet (KD) has been shown to increase blood cholesterol and triglyceride levels. It was hypothesized that this increase in lipid levels contributes to the anticonvulsant actions of the KD. One study, for instance, suggested that lipids are incorporated in the brain and subsequently alter the structure and function of neuronal membranes, causing changes to membrane fluidity, ion channel functioning and receptor-ligand affinities. They suggest these changes have anticonvulsant effects.

A major problem with this hypothesis is that not all KDs elevate lipid levels in a similar fashion. For example, the medium chain triglyceride KD does not elevate blood triglyceride levels, but it still has good anticonvulsant activity.

The pH Theory / Keto-acidosis Theory
"Acidosis" (acidification, or pH lowering in the brain) was first hypothesized as the anticonvulsant mechanism of action for the KD in 1931 by Bridge and Iob. When started on the KD, the patient’s metabolism switches from the using carbohydrate to using ketone bodies as an energy substrate. The ketone bodies acetoacetate and beta-hydroxybutyrate, which are mild acids, were hypothesized to lower blood pH in patients on the KD. This decrease in pH was hypothesized to confer the diet’s anticonvulsant effects. For example, low pH has been shown to inhibit pH-sensitive NMDA-type glutamate receptors (excitatory receptors in the brain) and pH sensitive gap junctions (these are electrical synapses, vs. chemical ones), causing a decrease in neural excitation.

The acidosis hypothesis has largely been abandoned, however, as clinical studies have failed to show long-term, KD-induced changes in pH. Animal studies have confirmed this finding by demonstrating that there is no change of brain pH in the animals fed a KD.

The GABA Shunt Theory
The GABA shunt theory suggests that the KD leads to higher levels of GABA (the brain's major inhibitory chemical) in the brain. It has been argued that the KD causes increased levels of α-ketoglutarate (this is a chemical precursor to GABA) in the brain. Excess α-ketoglutarate can be used to produce more GABA via the GABA shunt. Elevated GABA levels would then elevate seizure threshold in the brain, reducing the brain's susceptibility to seizures.

One of the strongest lines of reasoning opposing the GABA shunt theory is that the KD is often successful in patients that have already failed the anticonvulsant medications that elevate GABA levels in the brain -- e.g. phenobarbital (Luminal®), primidone (Mysoline®), topiramate (Topamax®), diazepam (Valium®) and tiagabine (Gabitril®). Therefore, if GABA agonists do not control the patient’s seizures and the KD does, it would not follow logically that the KD works by elevating GABA levels.
Another argument against the GABA shunt theory is that animal studies have shown that GABA levels are not increased in the brains of rats fed the KD.

The Energy Substrate Theory
Anaerobic metabolism—or metabolism in the absence of oxygen—occurs when glucose molecules are broken down into two pyruvate molecules outside of the mitochondria. This process, known as “glycolysis”, yields a small but immediately available source of energy for the cell (~8 moles of adenosine triphosphate per mole of glucose, ATP --- ATP is the cell's form of energy). Aerobic metabolism, however, requires oxygen and occurs in mitochondria via the Krebs cycle and the electron transport chain. Under normal conditions, most of the brain’s energy is derived from the aerobic oxidation of glucose, which provides higher levels of ATP (~30 moles). When dietary carbohydrates are scarce—such as in individuals on a KD—the brain begins to use ketone bodies for energy. Ketone bodies can be converted to acetyl CoA, which can subsequently be used in the Krebs cycle and the electron transport chain to make ATP. The conversion of ketone bodies to acetyl CoA, however, does not release ATP like glycolysis does.
Normally, glucose serves as the preferred energy substrate for the brain. In patients fed a KD, however, ketones can supply the brain with up to 60% of its energy needs. A study in 2003 hypothesized that glucose generates both “slow” energy (via Krebs cycle) and “fast” energy (via glycolysis). Ketones, however, yield only “slow” energy (via Krebs cycle). The energy substrate hypothesis suggests, therefore, that although ketones provide sufficient energy for regular brain activity, they do not provide enough “fast” energy to sustain seizure activity.

This theory is currently receiving widespread attention. I believe that this theory is getting very close to the heart of the matter. Unfortunately, this is also the most complex theory. I tried to give some detail without swamping those of you that aren't biologists. Essentially, there is something about burning fat for fuel (in the brain) that beats burning carbs when it comes to suppressing seizures.

The Ketonemia Theory & Acetone Hypothesis
Three ketone bodies, beta-hydroxybutyrate (βOHB), acetoacetate (ACAC) and acetone are significantly elevated in patients on the KD. The ketonemia theory postulates that ketone bodies themselves are anticonvulsant, and that the KD is effective because it elevates ketone bodies in the blood and brain. No specific mechanism of action, however, has been suggested (i.e. no “receptor” is known that ketones might bind, to confer their anticonvulsant activity. Some clinical studies and animal studies have reported significant correlations between levels of βOHB or ACAC and seizure protection. Other studies, however, have reported a lack of correlation between βOHB or ACAC and seizure protection. At present, the relationship between ketosis and seizure control remains unclear.
Opponents to the ketonemia theory have argued that βOHB or ACAC are elevated rapidly in patients on the KD, but seizure control can take some weeks to develop (although, it has been suggested, however, that it may take the brain a few weeks to adjust to the elevated ketone bodies before anticonvulsant effects are seen).

Historically, however, researchers have neglected the possible role of acetone in the anticonvulsant mechanism of the KD.
Acetone is a ketone elevated in patients on the KD (it's also the "active ingredient" in nail polish remover). The idea that acetone has anticonvulsant properties was first proposed by Helmholtz and Keith in 1930. The idea was then ignored for some years. Recently, however, it was reported that acetone was elevated in the brains of children on the KD. Also, a Toronto-based research group found that acetone had a wide spectrum of anticonvulsant effects in various seizure models. This led to the “acetone hypothesis”, which states that acetone plays a role in the anticonvulsant mechanism of the KD.

There are two lines of evidence for the acetone hypothesis. Firstly, acetone is elevated in fasted patients and patients fed the KD. It is known that both fasting and the KD have anticonvulsant properties. Secondly, acetone has been shown to have a broad spectrum of anticonvulsant action, similar to that of the KD, using experimental seizure models.

People are reluctant to accept this theory as we've come to know acetone as "glass cleaner" or "nail polish remover". However, our bodies continually make it (naturally) and it has a very apparent effect on brain activity when it accumulates in the blood. What isn't known, however, is whether elevations in blood acetone correlate with seizure suppression in kids on the KD.
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Is there anything that you'd like to know about epilepsy?
If so, please let me know and I'll do a post on it.

Have a great day,
Kirk.

Destiny Maker

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Thu, 12 Jun 2008 19:07:00 +0000

Interested in supporting a race to find the cure for epilepsy? Me too.

Glenn Fenster has begun another epic bike journey around the U.S. and Canada to raise money and awareness for epilepsy. Glenn's son Nyle has epilepsy.

To find out more, to support Glenn in his journey or to see whether he'll be coming through your neck of the woods, please visit: Destiny Makers.

I hope you are all well.
I successfully defended my PhD this week. It was the first of 2 steps in completing my degree. Pretty exciting.

Kirk.

Jack's Lemonade

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Tue, 27 May 2008 12:50:00 +0000

This past weekend (Saturday, May 24th) saw the wonderfully successful re-opening of Jack's Lemonade Stand. Jack has drug-resistant epilepsy, but has gained good seizure control on the ketogenic diet. Being a remarkably selfless 5-year-old, Jack decided that he wanted to help other kids who are sick, so he and his parents came up with the idea of opening a Lemonade Stand to raise funds for SickKids Hospital in Toronto, where Jack is being treated. This year marked the second annual Jack's Lemonade Stand, and the event was enormously successful, raising $40,000! So, please join me in congratulating Jodi and David (Jack's parents), Jack and Christopher (Jack's younger brother) on such a great job in raising both funds and awareness for epilepsy.

For more information on SickKids or Jacks Lemonade, please visit the links above.

A Few Things: CURE and the Ketogenic Diet

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sat, 10 May 2008 03:21:00 +0000

It has been a month since my last post. I apologize. I have been hunkered down writing my PhD thesis, which I handed in today. It is soon time to go back into hiding to study for my thesis defense- which takes place in a month's time.

CURE
This is a quick post, but I just wanted to pass along some information on CURE (Citizens United for Research in Epilepsy). CURE is a not-for-profit organization that is dedicated to supporting those who are trying to cure epilepsy. They raise funds for research and work to increase awareness of the disorder.

I met the president of CURE at a conference in Arizona. They are really doing great work. Check out their website (link above) to learn more about epilepsy and what is being done to cure the disorder.

KETOGENIC DIET NEWS
Changing gears a bit -- a recent paper by Dr. Helen Cross's lab in the U.K. just came out in Lancet Neurology. It is the first paper to use a randomized control trial on the ketogenic diet. This is very exciting news for those of us who are firm believers in the clinical efficacy of the ketogenic diet, and having to listen to nay-sayers that there is no solid, clinical proof.

The results of the study show that about 1/2 of the patients had a greater than 50% reduction in their seizures on the diet. About 10% had a greater than 90% reduction in their seizure frequency. These numbers are very similar to those commonly cited in the literature. This may not seem "amazing" -- but keep in mind that these reductions in seizure frequency are happening in people that have already failed drug therapies.

Anyway, a bit of a mixed bag there.
I hope you are all doing well.
Thank you for continuing to read my blog. My posts will be sporadic over the next few months as I finish up my thesis --- but eventually I'll get around to posting more regularly.

Kirk.

Ketogenic Diet Conference

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Wed, 09 Apr 2008 14:43:00 +0000

Well, I just got back from the 1st International Symposium on the Dietary Treatment of Epilepsy and Other Neurological Disorders. The conference was held in Phoenix, AZ. I'll admit right off the top that this was the best conference that I've ever attended. The quality of science was stellar and, for a refreshing change, there was a tangible level of emotion that you don't normally get at science conferences.

The first morning of the conference we listened to a great intro talk on the History of the Ketogenic Diet (KD). This is a high fat, low carbohydrate diet used to treat drug-resistant seizures. The KD used to be one of the main treatments for epilepsy until the introduction of the anticonvulsant drugs in the late 1930s. In 1994 NBC Dateline ran a story on Charlie Abrahams, the son of the Hollywood movie producer Jim Abrahams, who became seizure free on the KD after many years of uncontrolled seizures. A few years later, Jim Abrahams directed a made-for-tv movie entitled "First Do No Harm", starring Meryl Streep. This, largely, led to the resurgence of interest in the KD.

At the conference both Charlie and Jim spoke about the impact that the KD had on their lives. Charlie is currently a straight-A student in school. At the end of the conference we heard a few very touching talks. One was given by a mother whose son developed seizures at a young age. They started with the anticonvulsant drugs, but the first few drugs didn't work. The mother told her neurologist that she had seen Jim Abrahams' NBC Dateline show on the KD and wondered whether they should try her son on the KD. Her neurologist gave a very common response, which was to state that the KD is very tough to adhere to/administer and that it was largely experimental etc. The neurologist suggested that they try more drugs. This conversation recurred a few times as they cycled through many anticonvulsant drugs. Eventually, the son had a catastrophic seizure which left him mentally handicapped. The mother finally convinced the neurologist to try the KD, and the son became seizure free within a few days and began showing some cognitive improvement. Naturally the mother was enraged that they were discouraged from trying a treatment that could have prevented the brain damage caused to her son. This story was a powerful reminder that parents really need to listen to their "guts" and aggressively pursue new treatments if the conventional ones aren't working.

Something to keep in mind is that the first drug has a 75% chance of completely controlling your seizures (on average, and depending on seizure type). The chance of the second drug working if the first one fails is significantly reduced. The chance of a third drug working when the first two didn't is almost 0%. At this point you are faced with a decision. You can continue trying more drugs, which are unlikely to work but simple to take - OR - you can try something that requires significantly more effort/energy but has a significant chance of reducing seizures. The KD's "specialty" is stopping seizures in patients that have failed the anticonvulsant drugs. Although the numbers vary from study to study, about 1/3 of patients will have a >90% reduction in their seizures on the KD, another 1/3 will have a >50% reduction of seizures on the KD and the final 1/3 will have a <50% reduction in seizures on the KD.

Although the KD does not work for everyone, this weekend's conference served as a sobering reminder that the diet is certainly worth trying if your seizures fail to respond to one or two anticonvulsant drugs. The potential benefits of the KD far outweigh the difficulties associated with the diet.

On the last day of the conference we were fed a ketogenic diet lunch (soy wrap with roast beef and lettuce, soy based dipping sauce with sesame oil, some mysterious white dipping sauce (mayo?) and a cabbage slaw). Nobody knew until we were told later in the day ...

Kirk.

Epilepsy and Driving

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Tue, 25 Mar 2008 03:51:00 +0000

It has been a long time since my last post. Apologies for my absence. Things are very busy right now as I am wrapping up my thesis.

I was in Manitoba this past weekend at a family gathering. We were talking about heart disease and how some individuals with heart disease can be a real risk on the roads (eg, they could faint from poor blood flow or even have a heart attack behind the wheel). This raised the issue of whether or not people with epilepsy should be allowed to operate a motor vehicle.

The laws vary from country to country, but in general if you are diagnosed with epilepsy you lose your permit to operate a motor vehicle until you have been seizure free for a set period of time (usually a year or two). My supervisor often mentions that individuals with epilepsy do show an increased risk of motor vehicle accidents. However, the number of accidents for this group is not nearly as high as the accident numbers for individuals with cardiovascular disease. To top it off, neither of these groups is anywhere close to the "most at risk" population for motor vehicle accidents, which is young male drivers.

I think of insurance companies as being very shrewd and number-oriented (ie, all of their rates/policies are determined by statistics). If this were really true then young males wouldn't be allowed to drive. Instead, insurance companies simply charge young male drivers much higher insurance rates. I wonder why they can't simply do the same with other "at risk" populations, such as those with heart disease or epilepsy. Either way, they should be consistent.

Food for thought.

Have a good one.

Kirk.

Diagnosing Epilepsy

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sat, 08 Mar 2008 14:38:00 +0000

Some of this information has been presented in various posts below, but I wanted to add it here in the context of diagnosing epilepsy.

Epilepsy is diagnosed upon having more than one unprovoked seizure. Identifying the type of seizure is critical in deciding the appropriate treatment. It is a good idea to see an epileptologist to increase the likelihood of accurate diagnosis and treatment.

Types of Epilepsy

Symptomatic Epilepsy
Approximately 30-40% of patients with epilepsy have “symptomatic” seizures. These are seizures associated with a specific structural abnormality in the brain. Such abnormalities can include tumours, brain injury, infections, scars, and blood vessel malformations (Browne & Holmes, 2001). Symptomatic epilepsies are the hardest to treat and are often drug-resistant (Kwan & Brodie, 2000).

Idiopathic Epilepsy
Sixty to seventy percent of patients with epilepsy have “idiopathic” seizures. These are seizures that occur in an apparently normal brain. Idiopathic seizures are thought to be caused by a subtle biochemical or ionic imbalance, probably inherited. These seizures tend to respond favourably to anticonvulsant drugs.

Types of Seizure
Seizures are classified as “partial” (focal, local) or “generalized” (global).

Partial Seizures
Partial seizures, initially, involve only a portion of the brain. The three forms of partial seizures are simple partial, complex-partial and partial seizures that secondarily generalize.

Simple partial seizures are usually non-motor seizures that involve certain sensations (e.g. flashing lights, odd smells, strong anxiety). Those who experience a simple partial seizure remain conscious and alert throughout the seizure. These seizures typically last less than two minutes. Simple partial seizures may secondarily generalize (spread) to other brain structures.

Complex-partial seizures begin as a focal or “partial” seizures and spread to become partially generalized, which causes impairment of consciousness. The patient is not unconscious, but is unaware of the environment around him. Impairment of consciousness is what makes the seizure “complex”. Complex-partial seizures are often preceded by an “aura”, that warns the patient the seizure is going to occur. The aura is actually the simple partial seizure that triggers the complex-partial attack. During the seizure, “automatisms” may occur. These non-reflex movements can involve oral automatisms (e.g. chewing, lip smacking, and swallowing) or “ambulatory automatisms” (e.g. rubbing or picking hand movements, running or walking). Patients have no memory for the period of the seizure. Complex-partial seizures typically last between 30 seconds and 2 minutes but can leave the patient mentally hazy or confused for hours.

Generalized Seizures

Generalized seizures involve the entire brain. There are various types of generalized seizures, including absence seizures, myoclonic seizures and tonic-clonic seizures.

Absence seizures are characterized, behaviourally, by a sudden loss of consciousness accompanied by brief staring spells. Electrographically (ie, the pattern you see on the EEG), absence seizures are characterized by a three-per-second spike and wave discharge. Absence seizures tend to be very short (3-10 seconds) and they can occur many times in a day.

Myoclonic seizures involve a sudden jerking movement of the body. These seizures only tend to last a second or two but can recur frequently.

Tonic-clonic seizures are what many people think of when they hear the word “epilepsy”. They are seizures where the individual is unconsciousness and experiencing a convulsions (full body involuntary motor movements). The words “tonus” and “clonus” apply to the muscle actions involved in the convulsions. Clonus refers to a rapid succession of muscle contraction and relaxation, leading to jerking-like movements. Tonus refers to a constant state of contraction. This usually causes the limbs to stiffen and to flex or extend. Tonic-clonic seizures tend to last between one and two minutes, although they may last longer.

What Does This Mean for You?

It is important that you continually seek consults, tests, etc. until you can answer these three questions with confidence:

1) What type of epilepsy do I have? (partial seizures, absence seizures, etc.) If this is unclear, then the type of drug you need is unclear. This question can be answered through careful description of your seizures combined with EEG. Other tests may also be required.

2) What are the appropriate/best drugs for this seizure type? The first treatment option is almost always drug therapy. It is important to be prescribed the correct drug for your seizure type. Some drugs can make your seizures worse.

3) Are you a candidate for neurosurgery? This is the only potentially curative treatment. It is important to know if you may be a candidate. The test to determine this is admission to an EMU (epilepsy monitoring unit). You will be hospitalized and hooked up to an EEG and monitored daily until you have a seizure.

Things have been really busy, so I haven't been posting as much lately. Nonetheless, I'll continue to try and get something up every week or so.

Have a good one.
Kirk.

Kids Vaccine Linked to Fever and Seizures

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Thu, 28 Feb 2008 21:28:00 +0000

An recently published study shows a potential link between the ProQuad vaccine and seizures. In brief, the article suggests that kids who got the ProQuad vaccine were twice as likely to develop febrile seizures.

Here's a link to a good review of the article.

Have a great week,
Kirk.

Parenting a Child With Epilepsy: Part 2

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sat, 23 Feb 2008 23:49:00 +0000

We are lucky to have a 2nd post by Kristi, who is the mother of a young boy with epilepsy. Here is "Part 2" of her post on parenting a child with epilepsy.
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We have entered a stage of holding with our son’s epilepsy, which we like to call behaviour management. He is mostly seizure- free, with only break through seizures that we have to worry about. They are predominantly myoclonic jerks, which means they are less dangerous than the drop seizures or tonic clonic seizures he has also experienced. That said, we are now in less of a crisis- management stage, and are trying to maximize his developmental potential during this pre- Kindergarten time.

We have self- referred to Occupational Therapist, Physical Therapist, Early Childhood Intervention play therapist, Speech and Language pathologist, etc. We had to self- refer because when we see our neurologist, he remarks that Sam is doing really well. And he is, compared to children having many seizures a day. However, the meds he is on are wreaking havoc with his personality, and with his ability to cope, to listen, to be still- all very important school skills. He is stiff and awkward, he has a hard time regulating his voice level, he struggles with eating neatly. He obsesses about different foods, different activities, and sometimes seems to get ‘stuck’ asking for the same thing many times in a few minutes, even if he has been told ‘no’ or ‘wait.’ This is exacerbated when he is hungry or tired. At home, we are able to cope with these things, though being a busy household, it is often a matter of juggling between my husband and I. Going out in public is another matter.

As with any child who has special needs, we need to really plan our life and activities around our sons’ ability to cope in those situations. His reaction depends on the time of day, and what kind of activity it is. He gets over- stimulated and overwhelmed easily. He melts down when he can’t get his own way. He yells, cries, runs. He is five, but behaves like he is two in his ability to cope, and so we manage, but amid stares of judgment. I often wish we could just stay home, or at least tattoo: “Our Son Has Special Needs” on our foreheads. We live in an increasingly understanding society, where children with special needs are almost integrated, yet in a small town, we stand out.

With all of this stigma and judgment comes hurt and anxiety, but mostly just a desire for our son to lead a normal, five year old life. To that end, we strive to enroll him in activities we otherwise include him in. It just takes more planning and preparation on our part as his parents to help him be successful. As an example, he loves music, so we signed him up for a Music for Young Children 10- week class. By week eight, he listened and participated for half of the class. So this is obviously a process. And while I felt like the other parents, and even some of the children were judging my son’s behaviour, he was oblivious. It was me who felt this hurt and exclusion.

As parents who have become almost experts at advocating for our child, we signed up for a very comprehensive assessment at a Kinsmen Children’s facility in Saskatoon. After waiting almost as year, and making phone calls, just to be sure we were still on the waiting list, we got in. And the whole time we were on the list, and then after we got our appointment card, in the time leading up to it, we worried. We worried because we know there are many children who need services just as badly, if not more than our son. We were concerned that our perception of his needs were just that of overwrought, exhausted parents who didn’t have a real clue where he should be at developmentally. We, as is common with parents of special needs kids, were worried that we were overreacting. As it turned out, he should be seeing his OT/PT twice as often as he is, doing a regular physical therapy routine daily at home and in a random sampling of five year olds, he would be in the bottom percentile for development, skill and ability. He was likened to a three- year old.

So we should not have doubted our ability to assess our own child. We should have ignored our neurologist’s five minute assessment and pushed harder to get our son’s needs assessed. We should have realized that there is a fine line between advocating and being pushy, and that generally, we are not pushy people. We should have known that we spend a disproportionate amount of our time meeting our son’s needs compared to our other children’s needs. We should have trusted our parental instincts and gut feelings. Parental a child with epilepsy can be full of “we should haves,” because there is no handbook. And with the amount of seizure disorder types, the lack of firm diagnosis in many cases, and the variety of anticonvulsants used there are even few resources that seem to apply.

Again, we need to look objectively at our son- how easy is that to do? As other parents of kids with epilepsy, you know it is difficult. He IS doing well compared to so many other ill children out there, with far more serious and life- threatening disorders and illness. And we want to raise the standard high, until he gives us reason to lower it. We want to reach for the stars with our son, just as we do with our daughters. And we do have hope. We have a great team who work with our son and with us, to maximize his potential. We have a support system of family and friends to rival no other, one that really does want to know how we are doing, what is current and how they can help. And my husband and I have each other. We seem to work better as a team when we are under stress. I often wonder if it would all fall apart if we had no ongoing stress, but with five kids, a farm and everything that goes with that, a lack of consistent stress anytime soon seems unlikely! The other thing we have, is our loving, boisterous, energetic son, who always has time for a hug and always wants to snuggle at bedtime. That is the best therapy of all.
-Kristi

Good Article

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Tue, 19 Feb 2008 19:07:00 +0000

Here's a link to a nice article that I thought you might enjoy. It's a good summary on epilepsy, current epilepsy research and what the future might hold.

You can find the article here.

Have a great day.

Kirk.

The Gamma Knife

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Mon, 18 Feb 2008 14:10:00 +0000

Gamma Knife for the Treatment of Epilepsy.

I recently attended the 62nd Annual meeting of the Eastern Association of Electroencephalographers. One of the very interesting talks was given on the use of the gamma knife for the treatment of seizures. "Gamma knife", sounds futuristic, right? Well, this technology was actually developed by Lars Leksell (Sweden) in 1967. The technology is pretty expensive and not many centers have a unit. Canada currently has 3 gamma knives country-wide and the USA has about 90.

What is the Gamma Knife?
The gamma knife does not actually involve a knife. In fact, it is a non-invasive form of surgery insofar as there is no cutting or removal of skull. It is a form of “radiosurgery”. Radiosurgery is basically the use of radioactivity to kill tissue.

The gamma knife contains 201 radioactive cobalt sources. Cobalt gives off gamma rays, and these rays are focused toward a common, intersecting point. This point is called the “active zone”, where a very small lesion is created by the radiation (see picture).

How is the Gamma Knife Used in Epilepsy?
The gamma knife is normally used to treat vascular malformations in the brain, or to "blast" small tumors. The rationale for using it in epilepsy is to destroy a small group of cells that are thought to be causing the seizure activity. This means that the use of the gamma knife surgery is limited to focal seizures.

Advantages
- Discharged same/next day (no hospitalization required)
- Non invasive (no craniotomy – ie, opening of the skull)
- Can access the deep structures of the brain that are hard to reach surgically (each of the 201 ray beams is not damaging alone, but the aggregate of them in a single focus is. Therefore, you can pass rays through the skull, but it's only where they intersect that a lesion can be created - allowing deep structures to be lesioned without opening the skull)
- Effective against lesions in eloquent cortex

Disadvantages
- Often takes 2-30 months before the effects become apparent (the gamma rays don't immediate destroy the tissue. Rather, they seem to set-into-motion a series of events that lead to the tissue's death)
- Only effective at making small lesions
- Doesn’t give you a specimen (tissue sample) to study and analyze for pathology
- Can cause transient edema (swelling)

Possible Complications
Nausea 2-10%,
Seizures 2-8%
Edema (swelling) 2-8%
Development of tumors from radiation (this has happened, but very very rarely - about 3/200,000)

Conclusions
Irradiating the brain seems a bit scary, but the beams are very focused to the active zone and aren't thought to cause any harm to other brain/body areas. Of course, the alternative to gamma knife surgery is open brain surgery, which has its own risks and tends to make people very uncomfortable. That said, brain surgery remains the gold-standard for the removal of an "epileptic focus". This use of the gamma knife in the treatment of epilepsy is not well established and is only an option for patients with focal seizures that stand to be improved by destroying a small brain region.

It is "Family Day" here in Ontario - it's a new provincial holiday.
Happy Family Day everyone.

Kirk.

Photo credit: www.karmanos.org

Parenting a Child with Epilepsy: A Journey

kirk.nylen@gmail.com (Kirk and Kris in Israel) — Sun, 10 Feb 2008 00:10:00 +0000

Today we are lucky to have another guest post. Kristi and her husband are farmers in rural Saskatchewan and proud parents of five wonderful kids. Among her many accomplishments, Kristi instructs a taekwondo club and spends her spare time training for her 5th degree black belt.

Three years ago Kristi and her husband learned that their son has epilepsy. It has been a life-changing experience for them and their family. Here is the story of her journey so far.

Part 1.
Parenting a Child with Epilepsy: A Journey

A parent’s job, by definition, is to love, nurture, protect, care and advocate for their children. As a parent of a child with epilepsy, some of those duties become complicated and out of focus. Of course, we love our son. But now, we also love him with lots of time and energy spent on handling his seizure disorder. We love him with trips to the city for appointments: specialists, therapies, regular check-ups, tests; two hours each way, and of course fries on the way home. We love him with unexplained tight hugs, tears and time ... lots of time; Sometimes time to the exclusion of time with his sisters. We love him when he is crying as they jab him again for more blood work- we love him and we hold him down. We love him when he is overwhelmed, tired and unable to process, when he is freaking out yet again in a public place. We love our son in ways we never expected to have to love a child.

As for the care and advocacy part- it can become a full time job. We research, inquire and hound our sources of information time and again as something new pops up and we question again, whether the behaviour is within the realm of ‘normal’. I think, as a parent of a child with a seizure disorder, we spend an inordinate amount of time asking questions, many which can not be answered. The hard part of all of this is that no matter how much we love our son, how much we try to protect him and get the best care, treatment and therapies for him, we cannot change the outcome of this. Our son has an atypical seizure disorder. He can have a variety of seizures within a small amount of time, and there is no predictable pattern. He has been tested for the usual culprits- Lennox Gastaut being one of them, and after sending bits of muscle and tissue, cerebral spinal fluid, blood and bone all over North America, we have no more information than we had when we started; Just a son with less bone, muscle, tissue and an innate fear of hospitals. Along with the seizure disorder, our son has a condition called Chiari Malformation type II. So he has had brain/spinal surgery along with the epilepsy stuff. He had a skilled surgeon and a wonderful follow up MRI, but there will always be lurking doubts and concerns, fear that he could one day start to lose mobility.

The most disconcerting and disheartening fact of all of this, is that there are no absolutes. Our daughter has a bladder condition, one she will likely grow out of; one that can be seen on tests and measured and handled without pharmaceuticals that have devastating side effects. In effect, she has a plumbing issue- and one that is easy to treat. Our son has a computer problem- a bug, a virus, a cookie enabled somewhere in his brain. And no matter how many ways they look at it, they can give us very little more information than our first terrifying visit to the paediatric neurologist where we first heard the term ‘epilepsy’ with regards to our son. He was two. And while millions of dollars every year is spent on epilepsy research in North America alone, so far, they have only been able to churn out drugs that may or may not have any effect on seizures. And with the drugs comes a cost no one is really willing to address, because they work, sometimes. While this may all seem very demanding- the mother in me wants to demand that we Find Better Drugs! Especially with recent reports that a number of anticonvulsant drugs are linked to higher rates of suicide.

Ultimately, this is all a journey. One my husband and I, not to mention our son, who is five now, were not prepared for. One we find that allows us to get complacent for only very short amounts of time before we must get up, research, act and question once a again. Please join me on this journey and we can discuss together this anomaly called epilepsy and its effects on the life of the person with epilepsy, their family and caregivers.

-Kristi