Sometimes awareness is a good thing

A few years ago, my friend Christine’s young son had a seizure.  Not long after, he had another.  If you have more than one seizure in a year you have epilepsy, a broad diagnosis defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  According to the same source, 3 million Americans and 50 million people worldwide have it.  According to a 2010 program on The Diane Rehm Show, more than half of those 3 million Americans are children.

The Charlie Foundation

The stress and chaos this diagnosis brought into her family is her story to tell, but as a bystander, I can confidently say they were significant.

There are so many variants with this diagnosis: Is the seizure in one part of the brain or does it vary?  How often do seizures occur?  What triggers them?  The protocol is to study the brain, to answer as many questions as possible, then try medications. Some medicines are known to work in some parts of the brain better than others, but getting the right one at the right dosage comes with some trial and error.

Meanwhile, kids and families are trying to live their lives.  One of the top seizure drugs, Keppra (levetiracetam), lists the following possible side effects.

Dizziness; drowsiness; irritability; sore throat; tiredness; weakness.

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thoughts; dark urine; decreased coordination; extreme dizziness, drowsiness, tiredness, or weakness; fever, chills, or persistent sore throat; hallucinations; memory loss; muscle or neck pain; new or worsening mental, mood, or behavior changes (eg, aggression, agitation, anger, anxiety, apathy, depression, hostility, irritability, panic attacks, restlessness); new or worsening seizures; pain, itching, or redness at the injection site; red, swollen, blistered, or peeling skin; suicidal thoughts or attempts; unusual bruising or bleeding; vision changes; yellowing of the skin or eyes.


It’s enough to make a parent, uh, nervous.  Grassroots organizations like CURE, founded by David Axelrod’s wife Susan, advocate for more effective and safer treatments.

Christine noticed some changes in her son after he started taking the first medication, but it was impossible to determine if it was caused by seizures, the medication, or simply growing up.  As Christine and her family analyzed the patterns of her son’s seizures, she noticed a few things, one being that a couple of seizures occurred after he consumed sugary drinks.

She did more research and came across The Charlie Foundation, whose mission is to educate and facilitate investigations into the use of a special diet to cure pediatric epilepsy.  Unlike some of the fuzzy math of diet and cancer, there is a long history of successfully using ketogenic diets to control childhood epilepsy.  The dietary method was abandoned in the 1920s when drugs were developed and how often it isn’t mentioned to parents.  The Charlie Foundation is working to change that, to let parents know that there is another option.  There is a percentage of kids for whom medications simply do not work, and often increasing doses and numbers of medications results in debilitating side effects.  Diet is an option that has changed the outcome for many, and The Charlie Foundation wants to spread the word.  In fact, in September they are sponsoring an international symposium in Chicago on dietary therapy.

Highly Recommended: The Faces of Children, Pink Implosion

Christine’s son has switched medications and made modest dietary changes.  His side effects have diminished as have his seizures.  He is doing well, growing up, and able actively participate in life.  In fact, he recently got together with some of his buddies and Dhani Jones, a former Cincinnati Bengal well-known for his philanthropy.  Jones started BowTie Cause.  Different styles of bow ties are designed and sold, each graphically linked with the mission of a non-profit organization.  Here is the background of the Bow Tie Cause.  (As an aside: watch the video.  It will rock your world.)

The bow ties are publicized, including on Fox Sports, and sold.  The money is designated for a specific organization.Behold the bow tie created by Christine’s son, Jack, and his friends.

The lightning bolts represent the electrical disruption in the brain that causes seizures.  The recipient charity is The Charlie Foundation.  This weekend, it was worn by Fox Sports’ Ken Rosenthal.
I am awed by the work of Jack and his friends — to take something that has been so scary and stressful and to make something good out of it.  Jack is the same age as my daughter, so I’ve shared this story with my children as a fabulous example of just how much a child can accomplish.  My daughter said, “WOW, how did he do that?”  My son, a couple years younger than Jack, told me that he looked for, and saw, the tie during the Yankees/Tigers game.
Much like breast cancer before my diagnosis, pediatric epilepsy never hit my radar until Jack was diagnosed and Christine shared some of their journey with me.  It’s a humbling reminder of all the things I don’t know, things that are just as life-altering as my breast cancer diagnosis was.
It’s a big world out there — people are dealing with all manner of issues in their lives.  And some of them are accomplishing great things despite and alongside these challenges.
(If you’d like to know how you can help, contact The Charlie Foundation or send me a message.  I can put you in touch with the right people.)