Family

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Lucy’s Story

Johnson Family Back row: Gordon & Karen Front row: Lucy, Ben and Julia

Johnson Family
Back row: Gordon & Karen
Front row: Lucy, Ben and Julia


Editor’s note:  Lucy’s mom – Karen Johnson – shares why her daughter’s  story is an inspiration for her and for everyone who meets Lucy.  You can support Lucy as she walks in the Winter Walk on January 18, 2014 to help others in Northeast Ohio with Epilepsy.

Lucy is an inspirational 9-year-old.  She developed Epilepsy when she was 2-years-old.  Because of her numerous seizures her development is delayed. Lucy has never let any of her medical or developmental struggles stifle her tireless spirit.

Lucy is an advocate for epilepsy awareness.  She was an enthusiastic Purple Day volunteer in 2012.  She even attend the Purple Day Party in a purple costume.  She has been an Epilepsy Association eRacer , the Epilepsy Association’s Charity Running Team, for the past three years.  In 2012 she raised the most money of any runner under the age of eighteen.  She enthusiastically spoke at the 2012 Gala to share her story and spread awareness.  Instead of feeling sorry for herself, Lucy has embraced the chance to make a difference in the lives of other people, especially children, struggling to live with Epilepsy.

Lucy is an inspiration to other families of children with Epilepsy, not just because of her advocacy but because she has never allowed herself to think she can’t accomplish something because she has Epilepsy.  She is a competitive swimmer which is amazing for someone who used to have 50-70 seizures daily.  She has performed in two theater productions for Heights Youth Theatre despite the fact that memorizing song lyrics is very difficult for her.  Next summer she plans to train for and compete in her first triathlon.

Lucy’s spirit and love for life is contagious.  She enjoys making other people in her life happy and feels that her efforts through the Epilepsy Association are helping other children with Epilepsy live happier lives.

We are supporting the 2014 Winter Walk for Epilepsy because the Epilepsy Association is providing services that have helped my family learn to deal with the challenges of Epilepsy.  We hope you will support this very worthy cause too.

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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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Children are important too!

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Lacey and son Ryan

“A person’s a person, no matter how small.”
-Dr. Seuss

Epilepsy affects more than just adults – kids of all ages are diagnosed every day with epilepsy. Here in Northeast Ohio we are fortunate to have world class epilepsy centers to diagnose and treat children’s seizure disorders. However, even with these wonderful resources, the Epilepsy Association has noticed a gap in services available to meet the needs of families managing epilepsy.

Typically, 50% of the agency’s Information & Referral calls are from parents of children with epilepsy looking for the answer to the question “What do I do now?” Many of the parents who call are struggling with how to help their children manage the effects of epilepsy with each stage of development. Some of the issues parents tell us about concern the isolation their child is experiencing, meeting their child’s educational needs, or having a desire to meet with and network with other parents. In order to help families find the answers for these and other challenges, the Epilepsy Association has launched a new social service called
Kids and Family Program. For more information visit our webpage at http://www.epilepsyinfo.org/html/support.htm

The new Kids and Family Program provides services which help families find answers to their questions by identifying resources, and empowering the family to tackle the challenges epilepsy presents. The program is flexible, and family centered. We recognize that siblings and parents have their own hurdles when dealing with epilepsy. Family Centered means that the entire family has needs that must be met too.

There is no charge for these services. The service provides one-to-one consultation provided in a private and confidential setting by an Epilepsy Association social worker. The social worker will either come to your home or meet with you at the Epilepsy Association office. During the consultation, the social worker will help you understand the family’s needs as it relates to living with epilepsy, and identify community-based resources.

We are excited about offering a service that helps children with epilepsy, and their families. If you or someone you know might benefit from this new service, please call us at 216-579-1330 or e-mail lwood@epilepsyinfo.org. Please help us spread the word that help is only a phone call away!

Lacey Wood
Director of Community Programs

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Thoughts About Being a Father and Having Epilepsy

Editor’s note: This month Mike shares his thoughts about raising two boys while managing epilepsy. We don’t often hear a father’s point of view, and thank Mike for sharing his thoughts and feelings. Dads you are welcome to join the conversation by posting your comments. From all of us at the Epilepsy Association, we wish Dads a Happy Father’s Day.

Mike Wesel
~Michael Wesel

If you read my first blog you would know that I have had epilepsy most of my adult life.   I was first diagnosed with Epilepsy in 1972, when I was eight years old. My seizures were controlled later that year and I was seizure free for thirteen years.  They returned in 1985 when I was twenty-one and they were controlled again later that year. My seizures returned again in 1992. I was twenty-eight and have had break through seizures, with varied frequency and intensity, ever since.

I have two sons, the oldest was born on December 18, 1994 and the youngest on January 2, 1997.  I have had uncontrolled seizures and have not driven during their entire lives. My ex-wife and I separated in 2001, when the boys were only seven and four and were divorced in the spring of 2004.  According to the shared parenting plan my time for visits was on Wednesday nights and every other weekend.  I was responsible for picking up the boys and taking them to my home and she was responsible for picking them after my visit with them was over.

When we were first divorced I lived approximately a mile and a half from my ex-wife’s house.  Due to the location of our homes the only way for me to pick them up for my visit was by a taxi.  As the price of gas increased it became virtually impossible for me to get a cab to pick me up to go such a short distance.  When I opened my law practice, I moved to Lakewood, Ohio which is a very short bus ride to my office in downtown Cleveland. I soon found out that I was going to have to reduce my visits to once a month because of the transportation cost.

This became a source of great frustration and stress for me. The greatest source of loneliness for me is the quiet in my apartment after my sons have left from a visit. I have found that although I may not see them as often as I would like, I can remain actively involved in their lives by calling them quite frequently. Also, I take advantage of every opportunity to see them that I can. I try to get to as many of their school activities or other activities as possible.  They both have worked in my office copying and filing documents for me.

With the advent of the cell phone, I even text them as a way of communication even though at forty-nine years old I am not fond of texting.  My younger son thinks I call too much, but that’s alright, when he is older he will understand.  My oldest son now drives when they come to visit. Finding a free weekend out of our busy schedules has become more of an obstacle for them to visit.  However, we remain in contact by phone, email or texting on a regular basis.  In a sense the issue has resolved itself.

My oldest son is now a senior in High School and will start college in the fall.  He hopes to become a chemical engineer.  My youngest is a sophomore in High School and is on the Cross Country and the track teams.  I call them almost every day whether they like it or not and they know that I love them and vice versa. Remember anything is possible if you put your mind to it, use common sense, keep a positive attitude and maintain a good sense of humor.

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Uncertainty

From the editor of Insights into Epilepsy:  This month Ben Johnson has written a blog titled Uncertainty.  We encourage Dads to join Ben and share their insights into raising a child with epilepsy by sending us your comments. Thank you Ben for sharing your story with us.

UNCERTAINTY

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Ben with daughter Lucy

I can recall vividly my first experience with epilepsy. My wife told me that our 18-month-old daughter had been so tired that she fell off the toilet and head-first into the trash can. She was not hurt and quickly recovered herself. No harm, no foul. We thought it was so cute—a precious little girl being so tired that she fell into the trash. Off the toilet no less. We did not know it then, but our lives had already changed. And there was nothing cute about it. A few days after this first incident, our daughter briefly went limp while I was helping her brush her teeth. I was supervising her brushing very closely, so the seizure did not cause injury. It was very fast like a hiccup, and again she recovered very quickly. These were the days leading up to her first very severe grand mal seizure, an ambulance ride, a hospital stay, worried relatives, and loads of uncertainty. Loads of uncertainty. While our daughter had been seizure free for a brief period before relapse, and is currently seizure free going on five years now, we still live with uncertainty where guarantees are hard to come by. And as I reflect on this feeling of uncertainty, I feel more emboldened in the face of it because of the support we have built not only through family, friends, and the medical community, but also through the community we have joined in the Epilepsy Association. It is comforting to know that we are in this together, whatever the future may bring. And that support has meant the world to us.

~Ben Johnson

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Welcome to the Epilepsy Association Blog

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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