Medication

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Diet and Epilepsy: How the Ketongenic Diet stopped seizures

By Karen Johnsonn MS,RD,LD and MOM

Johnsons at Purple Day PartyLucy with her parents Ben and Karen at the Epilepsy Association’s Purple Day Party

I am a Registered Dietitian with a master’s degree in maternal child nutrition and a culinary school diploma.  Currently I am self-employed as a personal chef who caters to clients with special dietary needs or who prefer to follow a low-fat healthy diet.  I have three children and I take much pride in providing them a healthy, fresh, appealing diet.  Never did I imagine I would be using my training and expertise to manage my daughter’s epilepsy.  Never could I have guessed that my normally developing two-year-old daughter, Lucy, would begin seizing uncontrollably and that I would be uniquely qualified to save her.  Here is Lucy’s story…

In the Fall of 2006, Lucy had her first seizure.  A situation that began with one grand mal seizure progressively worsened until finally culminating with the administration of the Ketogenic Diet.  Before the Diet saved Lucy’s health and development there were numerous ambulance rides, doctor’s appointments, medication changes, and many, many seizures.  Lucy was eventually diagnosed with a severe form of epilepsy and was experiencing a maximum of 70 myoclonic and atonic seizures daily.  Lucy was no longer a normally developing child.  After almost two years of seizing Lucy could no longer play, feed herself, or dress herself.  The seizures were so frequent they were beginning to affect the development of her gross motor skills, fine motor skills, and memory.  She could not be left unattended because she would fall with every seizure.  She began wearing a helmet to protect against head injury from the falls.  After numerous medication trials of various combinations of Adivan, Clobozam, Depakote, Dilantin, Klonopin, Lamictal, Trileptal, and Topomax the Ketogenic Diet was determined by me, my husband, and Lucy’s neurologist to be her final hope.

Lucy entered the hospital on May 26, 2008, at 3-years-8-months-old to begin the Ketogenic Diet.  The initial hospitalization is necessary to monitor that the child safely enters Ketosis, an elevated level of ketone bodies in the blood, a state caused when the body is forced to burn fat instead of carbohydrate.  Lucy did not tolerate ketosis well initially.  When her body entered ketosis, after two days of starvation, she presented with diarrhea and vomiting.  After three days her body adjusted and she was sent home on the very rigid Ketogenic Diet.  Lucy was still seizing.  The Ketogenic Diet is in no way a definite cure for epilepsy.  Many children do not tolerate the diet long-term.  These children fail to thrive and therefore cannot remain on the Diet.  The children who do respond to the diet are still at risk because many families find the Diet too difficult to tolerated and do not remain vigilant enough, long enough for the diet to stop the seizures and allow the child’s brain time to “rewire”.

No neurological professionals can explain for certain why the Diet is effective at stopping seizures.  They only know it works by keeping the child in Ketosis.  Therefore, the Diet is based on a very strict ratio by weight of fat to combined carbohydrate and protein that must be adhered to by measuring all foods to the nearest tenth of a gram.

After about a month on the Diet all of Lucy’s seizures stopped.  For the next four-and-a-half years every meal and snack Lucy ate would be a challenge for her and me:  getting Lucy to finish every meal; distracting Lucy when she did finish and wanted more (which was more often the case as time wore on); creating new and interesting meal options; and finding ways to make the heavy whipping cream (that was unavoidable to maintain the ratio) palatable without using sugar.  With the help of the Ketocalculator, a website designed to calculate fat to combined carbohydrate and protein ratios and calories for individual Ketogenic meals, I was able to create 152 different meal options for Lucy to enjoy. 

Meal preparation for the Ketogenic Diet is very time consuming, even more so if you are also preparing meals for family members not following the Diet.  Because all meal ingredients are measured to the nearest tenth of a gram, all food for the child following the Diet must be prepared separately from the meals of those not following the Diet.

Through hard work, perseverance, and determination the Ketogenic Diet gave Lucy her life back.  She began to learn how to read, write, add, subtract, run, and even swim.  I became a dietitian because I have always been a firm believer in the power of “diet”.   Lucy’s story reaffirmed my belief and converted many people who witnessed her miraculous recovery.  The Ketogenic Diet achieved what no pharmaceutical could:  it stopped the seizures which allowed Lucy to develop as a normal child again.

PS:  Purple Day is the International Epilepsy Awareness Day.  Click here for more information

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“Nature is the best medicine” by Amy Mittinger

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Amy Mittinger enjoying life at a Harlem Globtrotters game

From the editor of Insightsintoepilepsy:  Amy Mittinger has joined our blogging team and will be blogging about her life and epilepsy.  Amy is a recent OSU graduate, and we look forward to reading about her thoughts, feelings and experiences as she enters into her professional life.   In this Blog, Amy reminds us that we are in control of our medical conditions.  In sharing her experience she wishes to emphasize that she is not advocating any particular course of treatment.  Are you in control of your epilepsy treatment?  We invite you to share your experiences by leaving a comment to Amy’s blog.  For  more information about epilepsy visit our website:  www.epilepsyinfo.org

I was diagnosed with epilepsy during my sophomore year of high school in fall of 2005. Talk about a shock. I was an A student and healthy athlete who took care of my body via exercise, healthy eating, and abstaining from anything harmful or dangerous.

But my life changed that Labor Day weekend, when I felt “weird.” Weird is the best term to describe the temporary spurts of feeling physically astray from the world around me. These spurts turned out to be simple-partial seizures. They were classified as “simple partial” because they were just that: very faint, or simple, and only affecting part of my brain. (The left temporal lobe, to be exact.) They never caused me to lose consciousness, fall, or otherwise suffer from sickness or pain.

That’s the beginning of my story. The middle is a long narration of medications, medical trials, illness, and the continuation of seizures through it all. I was a patient at Cleveland Clinic four times total — the first three for a week of monitoring each time, and finally the fourth for surgery. After some consideration and debate, I went ahead with this procedure in summer 2008 after my high school graduation that spring.

The surgery was a left temporal-lobectomy, or the removal of my left temporal lobe — the part of my brain where seizures occurred most. And it was beneficial. It didn’t eliminate the seizures, but greatly reduced them to 1 or 2 per day, down from about 15 per day. So I wasn’t complaining. I was thankful as ever. But I remained curious of ways to reduce them further.

I remained on medications, and plenty of them, since the beginning. Probably 10 total, and up to four simultaneously. Medications were almost an entirely separate problem. I swallowed pills that caused nausea, fatigue, shaking, sensitivity to smells (which did, and still does, cause seizures in itself), and everything in between. I remained on two medications after my surgery. Luckily, they didn’t have side effects. But that’s where curiosity kicked in. Instead of increasing doses and/or taking additional medications, what if I did the opposite? What if I decreased medications to eliminate anything “epilepsy related” from my body?

I posed this question to my doctor, who — after knowing and trusting me for five years — gave me the okay be my own boss and go ahead. So I did. I said I would begin decreasing medications. I politely refused decreasing at the usual pace of once per week (too fast, if you ask me), and told him I would do this slowly in order to notice my body’s reactions. So the adventure began. Of my two medications, I began reducing the dose of just one at a time, at a rate of once per month.

It took a couple months to notice any effects (which was fine; it proved my theory to extend the process). But after the finale of this eight-month decrease, the effects were good! Great, actually. I noticed an increase in energy and a decrease in seizures. So I soon began decreasing my second medication. This took an additional eight months. And the positive effects continued.

The total decrease lasted a total of 16 months. And after it’s finale in May 2013, my seizures have nearly vanished. I’ve had one in the last three months. To top it off, I feel awesome. I’m energetic, alert, and most importantly, feeling seizure-free and healthy.

If you have epilepsy and are reading my story, the moral is not to order you to immediately stop taking any and all medications. The moral of this story is to oblige your own feelings.  If you’re convinced that your given medication is helping you, awesome. So be it. Continue helping yourself. But if you suspect the opposite, or just aren’t sure, do what I did. Talk with your doctor about your choices and desire to reduce the medication(s), either very slowly like me and/or at your own pace entirely, and to let nature take its course. It may have positive effects similar to my case. It may also have worsening effects. Just pay attention to these effects, and more importantly your own body, to determine your next course of action. If you think and act this way under any circumstances, epilepsy or not, I believe you will witness an increase in your health. Good luck!

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Welcome to the Epilepsy Association Blog

3-1Kelleycompressed

I am pleased to be writing the inaugural blog for the Epilepsy Association . I hope you will visit often, and find this blog site a place where you get useful and practical information about things that matter to those affected by epilepsy and seizure disorders . There is still so much that is unknown about epilepsy, and many people living with a diagnosis of epilepsy feel that they are alone on their life journey. We want this blog to provide—a lifeline for this journey. We hope this site is a source of information and inspiration.

As the CEO of the Epilepsy Association, it is my distinct pleasure to speak on behalf of those in our greater Cleveland community living with epilepsy. These remarkable individuals and their families work to overcome the difficulties and struggles that epilepsy can bring — and in spite of the seizures, they persevere and lead meaningful lives. Time and again, we receive calls from individuals who are discouraged and looking for ideas to address a problem at hand. They reach out to us to make a connection and gain support. We provide the support they need, and help these individuals leverage that support and encouragement to change their situation.

Dear reader, know that you are not alone and there are others who care about and share your experiences.

To learn more about the Epilepsy Association and the services we provide, please visit our website, our Facebook page or our Twitter feed.

~Kelley S. Needham