Epilepsy Association

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Our Connection with Epilepsy by Lynn Shiverick

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Shiverick Family at Gala. From left to right Reg, Lynn, Louise and Parker

Editor’s Note: The Legacy Award is given each year at the Epilepsy Association annual Gala. The award recognizes individuals and organizations for outstanding support of the Epilepsy Association and for contributions to increasing the community’s awareness of and response to epilepsy. This past November, the Epilepsy Association was thrilled to present Lynn Shiverick with the 2013 Legacy Award.

Lynn was honored for her contribution to epilepsy awareness and for her years of service on the Epilepsy Association Board of Trustees.

We encourage you to find out more about the Epilepsy Association resources, especially the programs for schools that Lynn mentions in the following family story.

My husband Reg and I have four children, now ages 19 to 27, but it is because of our third son, Parker, that we are a family with a connection to epilepsy.

Parker was diagnosed with epilepsy when he was six years old. It was then that we could clearly identify that he was having partial complex seizures, and it explained a series of earlier frightening episodes and behaviors that we had just not understood. He was started on medication, and the following year we moved to Cleveland.

That year turned out to be a really tough one for Parker and for us – during the year, he had 17 or 18 seizures, and they seemed to be getting worse. His first medication also made him dizzy, tired and kind of dazed. We had a lot of worry – about his safety, the long term quality of his life, what his options would be, how his learning was affected, would he be dependent, would he ever be able to drive, could he swim, play on the jungle gym and this is when I really learned about the particular challenges of people and families living with epilepsy.

I was introduced to the Epilepsy Association by Max Wiznitzer, Parker’s pediatric neurologist at University Hospitals. Dr. Wiznitzer is a wonderful man, incredibly caring. He’s what I would describe as a “whole patient” kind of doctor. At our very first appointment, after reading the notes and examining Parker, he turned to me and said “What do you know about epilepsy?” And the answer then was that I knew very little. He suggested the Epilepsy Association as a first stop resource. Since epilepsy is the kind of condition that affects an entire family, I really gave him credit for being the kind of doctor who pushes parents to learn as much as they can about the disease, their choices and resources.

Initially I contacted the Epilepsy Association as an educational resource, but quickly discovered that the organization was much more than an information source. It is also a service organization dedicated to helping people with challenges such as issues with employment, medicine and medicine cost, transportation, support groups, and education.

One of the school programs that I was really grateful for was the Puppet Program, where Parker’s classmates were presented with a Puppet Show explaining what a seizure is, how to respond to someone having a seizure, and informing his teachers about epilepsy and what to do in the event of a seizure. Parker did have seizures at school and twice on the basketball court when we were not there, so I appreciated the value of this resource for educators and school personnel.

Parker began taking a new medication when he was in grade school, which works beautifully for him and he basically has been seizure free ever since. He is now 22, an engineering student, also a talented musician, and he drives with a restricted license that is approved by his doctor every six months. We think he will be on medication for life but we consider ourselves very lucky that his seizures are under control. It doesn’t work that way for everyone.

I joined the Epilepsy Association Board soon after learning about the organization, and then chaired the Gala party for several years. I also chaired the Development Committee, and did what I could as an advocate. I think in the beginning it was my way of doing something to help Parker; but the more I learned about the challenges of people living with epilepsy, particularly those without the resources I had, it became important for me to continue to help and stay connected.

Epilepsy is truly a terrible, really limiting condition when it is not well controlled, and the Epilepsy Association does great things to help. I think when you have a personal connection to something like epilepsy (and there are others), and when that connection has made you learn that adults, kids and families are really challenged and struggling, the responsible thing to do is to help where you can. It’s important to support the work of non-profit organizations. Fortunately, we live in a community nationally known for its philanthropic support.

I was honored to be chosen for the Legacy Award, but I think it is not really about me. It is about increasing awareness, and support for people and families living with the challenges and limitations of epilepsy.

This coming January 18th, the Epilepsy Association is sponsoring the 9th annual Winter Walk for Epilepsy. This annual fundraiser is a great way to become involved, to meet others with a connection to epilepsy and to find resources. I encourage you to click here for more information about this fun, family friendly and indoor event!  The walk will be held at SouthPark Mall in Strongsville and Great Lakes Mall in Mentor.

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NICHOLAS – OUR THANKSGIVING INSPIRATION!!! by Joanne Meyers

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Happy Birthday Nicholas!

Editors Note:  This month we are posting the stories of the 2014 Winter Walk Featured Families.  These families are sharing their stories to bring about greater awareness of epilepsy.  Nick’s mom has written this blog.  To support the Meyers Family’s effort please visit the Meyers Winter Walk Team Page  We hope to see you at the annual Winter Walk for Epilepsy on January 18, 2014. It’s an indoor walk! The Walks are held simultaneously at the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor.

Nick was diagnosed with Tubular Sclerosis shortly after his birth at 32 weeks.  Tubular Sclerosis Complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.  The aspects of TSC that most strongly impact quality of life are generally associated with the brain:  seizures, developmental delay, intellectual disability and autism.  Current estimates place TSC affected birth at 1 in every 6000.  Today, there is no cure for TSC.

Since the age of 3 months, Nick has experienced daily seizures of all types.  At times, he experiences seizures that result in him falling to the ground, resulting in injuries.  Many, many medications have been tried and have failed to control them.  He is currently taking 13 pills per day, a mixture of seizure medications, and has not maintained seizure control.  He has spent approximately 5 weeks in hospital monitoring units to determine if he is a candidate for brain surgery.  So far, all attempts have been unsuccessful.

Nick is non-verbal, developmentally delayed and exhibits many autistic qualities.  In spite of this he is a very energetic, happy, determined and loving young man.  Even though he is non-verbal, he makes his wants, needs and emotions very apparent to those around him!  He exhibits an amazing sense of humor that shines through even without the use of words.  He has chosen to embrace life and live each and every day to the fullest.  He doesn’t waste one second feeling sorry for himself.

As a family, we’ve chosen to not allow Tubular Sclerosis or epilepsy define Nick or our lives.  We make the conscious effort, led by Nick’s example, to go on living, even on the worst days.  This would not be possible without prayer, laughter and the amazing support system that has surrounded us.  We are blessed that every aspect of Nick’s life is supported with individuals that accepted him unconditionally and lovingly.

Our family and friends are always there to provide constant emotional support.  Nick’s classroom staff, in the Multiple Handicaps room at Greenbriar Middle School in Parma, are his biggest cheerleaders.  They challenge him each day to achieve success  through academics, life skills and social skills.  In the summer, he attends Camp Happiness (Catholic Charities) where he is accepted and loved unconditionally.  He participates in Parma Pride, Parma’s special needs athletic program.  He comes together with other special needs children, learns athletic skills and gets the opportunity to just be a kid.  He participates in activities at his little brother’s school where he has never been looked at as “different”.  He is a member of Troop 2008, Parma’s special needs Boy Scout troop, where he can have fun with his friends.  His medical team at Cincinnati Children’s Hospital works tirelessly to keep up with his ever changing medical needs, and provide all encompassing support for our family.

Even with the battle’s that have been presented to Nick, he is the happiest and most content when our family participates in events that involve “giving back”.  He participates in Catholic Charities Walk of Hope.  He helped to plan a movie for special needs individuals with his dad at PlayhouseSquare.  He helps to raise funds for Troop 2008 so that he and his friends can go on field trips together.  He is participating in this year’s Epilepsy Winter Walk to help raise awareness and support for those with epilepsy.

Nicholas was born on Thanksgiving Day, 2001.  That truly summarizes Nick.  As a family, we are so thankful to have him in our lives.  He is the best son and big brother imaginable.  He has taught us the true meaning of life:  to count your blessings, love unconditionally and to give back to others in need. Please join our family and our team on January 18, 2014 at Southpark Mall for this year’s Epilepsy Association Winter Walk.  Please follow Nick’s example and give back to those in need by donating to this cause that is so special to our family.

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Paige Frate, Mighty Princess Warrior prepares for the 2014 Winter Walk

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Paige inspires her team to come in first.  Click here to support Team Paige

Editor’s Note:  On January 18, 2014 the Epilepsy Association will host the 9th annual Winter Walk for Epilepsy.  The 2-mile walk will be held simultaneously indoors at the Great Lakes Mall  in Mentor and the Southpark Mall in Strongsville. Our passion is to raise epilepsy awareness and one way we do this is by sharing the stories of living with epilepsy.  Here is the wonderful story of Paige Frate submitted by her mom Kristina.

I am sharing my daughter Paige’s story to increase awareness of epilepsy and to encourage your support of the 2014 Winter Walk for Epilepsy.

Paige was born on August 18, 2010.  At 6 months of age, she had her first seizure which was associated with a fever.   During the next two months, additional seizure types developed: clonic, myoclonic, absence, and complex partials.  At 8 months of age, through genetic testing, Paige was diagnosed with Dravet Syndrome. It is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), which is a rare and catastrophic form of intractable epilepsy occuring in roughly 1 in every 30,000 births.  She will never outgrow this condition and it affects every aspect of her daily life, along with our family’s as well.

SMEI is a progressive disorder characterized by multiple seizure types that are resistant to treatment, often including life-threatening status epilepticus.  Earmarks of the syndrome include behavior and developmental delays, lowered immunity, chronic infections, delayed speech, sleeping difficulties, orthopedic concerns, and hyperactivity to mention a few.  In addition, children with Dravet face a higher incidence of SUDEP (sudden unexplained death in epilepsy).

Paige’s development remained on track initially, then declined significantly at 19 months.  This is when she became extremely ill with RSV, had a 67 minute seizure, her heart and lungs shut down, and emergency ECMO surgery was performed.  The surgery saved her life, but caused her to have a stroke.  She lost the ability to walk, talk, and eat.  It has been 18 months since the surgery, and I happily report Paige has learned  to walk again and can feed herself.  Her speech is significantly delayed, but she is making tremendous progress.  She attends therapies on a regular basis and continues to show us how resilient she is.

Paige’s Dravet impacts every aspect of our life.  The care she requires is intense.   • She requires high doses of medicines which are time regimented medicines.  (She currently takes 8 doses a day which are just her seizures meds.) • We try and maintain her body temperature.  She is ultra-sensitive and if her temperature rises above 99 degrees, she will have a grand mal seizure.  Therefore, we use a cooling vest.  • She cannot be exposed to direct sunlight.  We keep protective gear on her when outside. • She cannot be in a stressful environment. • We ensure Paige receives ample rest to eliminate sleep deprivation.  • It is of upmost importance to limit her exposure to illness.

My mission in life is to educate others on this spectrum disorder and type of epilepsy.  As a family we are dedicated to raising money to increase Epilepsy Awareness.  This is why I encourage you to support the Epilepsy Association Winter Walk and TEAM PAIGE.  We’ll be at the Mentor walk and hope to see you there.

Sincerely,

Kristina Frate – mom to Paige, the Princess Warrior

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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!