Parents

Amazing Kid Alert!
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Amazing Kid Alert!

As a 5th grader in the Hudson School District, Camden Frank was assigned to do a Passion Project.  Camden selected to use epilepsy for his topic as he has a family friend recently diagnosed and has seen how fear of the unknown and fear of the future took over this family.  Camden went above and beyond his assignment by preparing a 24 minute documentary on epilepsy.  He included information about seizure types, diagnosis, medications, and seizure first aid.  Camden used his entire 5th grade school year to produce this documentary.  He conducted interviews with epilepsy professionals as well as individuals living with epilepsy.  He did this all on his own while his mother filmed the interviews and drove him to where he needed to be.  It took Camden 3 attempts to make his documentary before finally being satisfied with the product.  His first was created on his iPod Touch and it was 5 minutes long.  He felt that it did not show the full picture of epilepsy.  The second was completed on his laptop and was ten minutes long.  He was still dissatisfied and did not feel that enough was presented in that time to help others understand the significance of epilepsy.  His final version was presented to the Epilepsy Association staff on June 16th.  EA staff were moved and in awe of his project and the kind and talented person that is Camden.  He was supported that day by his mother and sister and you could see the pride radiating from them.

Camden and his sisters had a lemonade stand in their neighborhood and raised $100 for the Epilepsy Association. Camden presented this check to Kelley Needham, CEO of the Epilepsy Association following his video presentation.  Camden and his sisters are planning on having 2 more fundraising lemonade stands for the Epilepsy Association. 

Camden is one in a million.  He truly is an amazing kid as he so generously spreads epilepsy awareness and education.  He is a true role model for children of all ages and we are honored to share the same passion for epilepsy and epilepsy awareness. 

Congratulations Camden on a job well done!

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“Coping with the Holidays with information provided to families in crisis” by Lacey Wood

Lacey with husband Joe and son Ryan at recent purple pumpkin day

Lacey with husband Joe and son Ryan at recent purple pumpkin day

As the song states this is “The most wonderful time of the year”, but there are still so many things that actually make it the most difficult time of the year.  For someone who has epilepsy, maybe along with a mental health condition or maybe a parent who has a child newly diagnosed with epilepsy, the holidays are the farthest thing from your mind  as you and/or your family may be struggling to deal with all that epilepsy has brought to your life and that of those who love you.

Here are the Epilepsy Association’s Top 3 Tips for Coping with the Holidays:

1. Take medication as normal. Holidays are busy times and it is easy to forget to take medication. Set an alarm for or find a creative way to remember to take medications.
2. Get enough sleep. Sleep is important in managing epilepsy. Keeping regular sleep patterns can assist in getting enough sleep despite all of the excitement and daily happenings.
3. Avoid alcohol. Drinking with medications can reduce the medications effectiveness which could increase the likelihood of a seizure.

The Epilepsy Association focuses on the strengths that each person has to empower them to make positive change in their lives and live more independently. If epilepsy affects you or your child, then the Epilepsy Association can help with the following programs:

  • Adult Case Management Program- Case Management services for adults who have epilepsy as well as a mental health condition. A one on one service with a qualified case manager, who is trained in epilepsy and mental health, to assist with the barriers that these conditions present in a person’s daily life, such as; benefits and entitlements, advocacy, doctors’ appointments, epilepsy education, and mental health treatment interventions.
  • Kids and Families Program- Support for the entire family where there is a child diagnosed with epilepsy.  A needs assessment is completed for everyone in the family to ensure that all members are supported.  The program provides connections to community resources to assist each individual within the family to cope with an epilepsy diagnosis.
  • Adult Support Group- Support group that meets the second Wednesday of each month at Lake West Hospital to provide support to adults with epilepsy as well as  support for other adults who support them.
  • PIKES (Parents Inspiring Kids with Epilepsy and Seizure Disorders) Parent Support Group- A support group for parents of children with epilepsy.  Parents come together to meet the second Tuesday of each month at the Parma Library to provide  support to each other as they work through the challenges of having a child with epilepsy.However you choose to spend the holidays this year the Epilepsy Association hopes that you have a wonderful and safe season!
    Medicaid is accepted and a sliding fee is available.
    Holiday closings: December 24th, 25th, 26th, 31st, and January 1st and 2nd.
    2831 Prospect Avenue, Cleveland, Ohio 44115
    Phone: 216-579-1330
    Hours of Operation: Monday through Friday 8:30 a.m. – 4:30 p.m.
  • Visit us online at www.epilepsyinfo.org
    Follow us on Facebook and Twitter

The Epilepsy Association is a non- profit organization serving individuals with epilepsy in Northeast Ohio

Lacey is the Epilepsy Association Director of Community Programming

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A Father Remembers His Son – By Kenneth Lawrence

Lawrence Family Bottom Row: Kenneth and Romena Top Row Left to Right: Kenneth Lawrence, II and Keenan

Lawrence Family
Bottom Row: Kenneth and Romena
Top Row Left to Right: Kenneth Lawrence, II and Keenan

Editor’s note: Several months ago, I had the privilege of meeting Kenneth and Romena Lawrence. The couple recently lost their son Keenan due to epilepsy. The Lawrence’s have chosen to remember Keenan by setting up a memorial fund in his honor Through this loving tribute to their remarkable son, they hope to support other parents raising a child with epilepsy. This month we are sharing Kenneth Lawrence’s tribute to his son Keenan by sharing some of his remembrances.

You asked me if I could give you some information about Keenan. There is so much to share, but I’ll begin Keenan’s story at the age of 11 when he started having seizures.

When Keenan realized what epilepsy was, and that he would live with epilepsy the rest of his life, he got very depressed.  One day he asked me how I would like to be like him.  I responded, “What do you mean?”  He said, “I’m a freak.”  That just hurt to hear, in fact, it wounded me.  Not knowing what to say, I tried to give him some encouraging words.

That night I prayed for God to give me the wisdom and knowledge to let my son know that he was not a freak.  When I woke up the next morning, something told me to go to the computer and Google “Famous People with Epilepsy.”  Hundreds of pictures of famous people popped up.  I was so excited that I woke Keenan up to show him what I had discovered.  That day, I left him on the computer and when I got back four hours later, Keenan was still there.  He told me that he wanted to read about everyone.  I’m sharing this story because after that point, Keenan never looked back.  Everything Keenan attempted, he mastered.

When Keenan was 8 years old, he invented at board game called Dice Cards.  If you would like to see an infomercial on the game, just Google Dice Cards by Kenny Lawrence.  The game is very entertaining.  Please keep in mind he was only 8 years old when he brought this game to the family.

Keenan showed an early interest in electronics.  At age 12, he found the very first video game that we bought one Christmas for Keenan and his older brother.  The game, Sega Genesis, wasn’t working and Keenan told me that he wanted to try and fix it.  I said that it would be good practice for him.  I remember coming home from work and finding Keenan in his room working away.  After about a month, I started to feel sorry for him, and thought maybe I should jump in and help him out.  Then one day, he told me that he fixed that game!  We went upstairs to his room, and sure enough, he had the game working.  We played that game all night long.  I went to school for electronics and was amazed at the troubleshooting techniques Keenan used.  He diagnosed the problem with the broken game as if he were a certified technician.

When Keenan was attempting to get into college, he needed an admissions letter from his doctor.  I was shocked when I got the letter.  It read as if Keenan were mentally retarded.  We never showed Keenan the letter.  Instead, I made an appointment with his doctor to let her know that for the last three years he was an honor roll student.  She had seen Keenan for eight years and did not know what was going on with him.  The doctor agreed to rewrite the admissions letter, and with her more favorable endorsement, Keenan entered college without any restrictions.

Keenan first went to a junior college, which he didn’t like very much.  He kept telling us that he wanted to go to a technical school.  We encouraged him to stay two years in a junior college, and then agreed to send him to ITT Technical College.  This is when Keenan started accelerating academically.  Keenan was on either the dean’s list or the honor roll the entire time he was at ITT.  During his last two years, he tutored many of his classmates who were of different ages and races.

When we lost Keenan this past January, he was just a few months away from graduating with his Bachelor’s Degree in Electronic Engineering.

I’m not sure how we will ever get over losing Keenan so early in his life.  He worked hard, overcame so much, and showed great promise.  To make sense of everything, we called the Epilepsy Association to see how we could help others.  This is why we started the Keenan Lawrence Memorial Fund.  We want to help other parents see the promise their children have too.  When we first learned of Keenan’s epilepsy, we needed to talk with someone who understood how to raise a child who has seizures.  We needed to know what to expect and how to handle the difficult situations that were bound to arise.  After some research, my wife, Romena, and I selected the Epilepsy Association because of their Kids & Family Program.  We understand how this program helps other families like ours.  As a family, we invite you to support all the Keenan’s who were lost too soon because of epilepsy.  For our friends and family who have asked, “what can I do?’ and for everyone who is moved by our story to help, we ask that you consider making a gift to the Keenan Lawrence Memorial Fund.  The Epilepsy Association has created a link so that donations are securely made on-line.  Here is the link to Keenan’s Memorial Fund.  All proceeds will go to the Epilepsy Association in Cleveland, Ohio.

 

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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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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

LucyandDad2

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