Treating Epilepsy and Being a Teenager

Ashley(middle) her sister Andrea and father Adam

Ashley(middle) her sister Andrea and father Adam

Magnetic treatment for epilepsy helps daughter reduce length and frequency of seizures and regain life as a teenager

My 15-year-old daughter, Ashley has just completed her red belt in karate. While perhaps not an uncommon achievement for some kids taking karate lessons, it’s something I never would have thought possible for Ashley.

Ashley was born with a chromosomal abnormality and has suffered from a range of medical problems since the day she was born. We took each one in stride, until one morning, in 2008; Ashley experienced a seizure as she was brushing her teeth. That day, our lives—mine, her sister’s, her mother’s and most of all Ashley’s—would be changed forever.

I found Ashley on the floor seizing. Frightened, I rushed her to our pediatrician. Some people may experience a single seizure in their lives and never have another—our doctor suggested that although the experience was upsetting, we should not be alarmed just yet. I brought Ashley home, but later that day she seized again, and then again. We then brought her to a local hospital where we were introduced to a pediatric neurologist who diagnosed Ashley with epilepsy. Overnight Ashley’s seizures increased from around ten a day to one nearly every 40 minutes.

On that day, like many people, I knew almost nothing about epilepsy. A surprising reality considering that, according to the Epilepsy Foundation, approximately three million Americans have epilepsy and it is the third most common neurological disorder. Epilepsy is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined, and approximately 200,000 new cases of epilepsy are diagnosed each year.

Ashley’s mother and I watched helplessly as our young daughter declined physically and cognitively.

Epilepsy is a disorder characterized by recurrent seizures, which occur when the electrical system of the brain malfunctions. Though most of us think of a typical seizure as someone falling to the floor and convulsing, seizures can take many different forms – from blank stares, to difficulty speaking or other cognitive problems.

Like most people when they are first diagnosed with epilepsy, Ashley was prescribed with various combinations and dosages of anti-epileptic medications. We learned a majority of patients (about two-thirds) are able to gain control of their seizures through this type of treatment. Unfortunately, Ashley was not among this group, and she has what is known as “refractory,” or difficult-to-treat, epilepsy. The medications caused Ashley to lose alertness and become almost-catatonic, all while she continued to have frequent seizures. Ashley’s mother and I watched helplessly as our young daughter declined physically and cognitively.

The fear of Ashley getting seriously injured during a seizure became unbearable. Everyday activities like going to work and grocery shopping became stressful undertakings that would have to be planned in advance to ensure someone could be with Ashley 24/7.

At one point we were forced to make her use a wheelchair and even wear a helmet. Going to school became a daily struggle; because of the side effects of the medications she was unable to focus and sometimes even to stay awake during the day.  Ashley had multiple hospital admissions because of the negative side effects of many of the medications made her so weak that she could not even eat or swallow.  Not wanting to disrupt her education even further, her mother and I hired a special nurse to stay with her during her classes.

Finally, we decided to explore other therapy options with Ashley’s neurologist’s guidance. One option was brain surgery to remove the part of the brain where the seizures originate. But after EEG imaging of Ashley’s brain, we learned she was not a candidate for surgery because the seizures were started in multiple parts of her brain, and removing part of it would not likely impact the seizures. Knowing we needed to find another option, and never giving up hope there might be a way to better manage this condition that was stealing my daughter’s childhood from her, we kept researching and talking with our doctor. Ashley’s neurologist then recommended we consider Vagus Nerve Stimulation (VNS) Therapy an FDA-approved device often referred to as the pacemaker for the brain.

VNS Therapy consists of a small generator that is implanted under the skin in the left chest and delivers mild electrical impulses to the patient’s left vagus nerve, which then activates various areas of the brain. We learned that VNS Therapy also comes with a magnet that, when swiped over the device can stop or decrease a seizure instantly.

The magnet is what interested me most as a parent. Any parent who has witnessed their child go through the often scary experience of a seizure knows that one of the worst parts is the feeling of helplessness it causes. For the first time, I would be able to physically do something to help my daughter while she was experiencing a seizure. We didn’t know if VNS Therapy would work for Ashley, but the thought of having another option, and one that might even give her mother and me some sense of “control,” gave us hope.

After careful consideration, we decided to move forward with the VNS Therapy procedure for Ashley. The implant procedure took less than two hours. And from the moment Ashley left the hospital, our lives have changed for the better.

Ashley’s seizures now last approximately thirty seconds to one and a half minutes compared to about four or five minutes before. Instead of having about 30 seizures each day, Ashley’s seizures were reduced to five or six.

Ashley has also started using a new medication, which, combined with VNS Therapy, has decreased her seizures even further to about seven mild seizures per week. When Ashley feels a seizure is coming on, she or I can swipe the magnet and stop the seizure from progressing. VNS Therapy has helped Ashley so much that she was recently re-implanted for the third time in March 2012.

These days, Ashley enjoys being a young girl. She’s able to stay alert during school and participate in activities with her friends. She loves being a Girl Scout, riding her modified three wheeled bicycle and taking karate lessons. Simple experiences that other families might take for granted, I view as gifts each day.

I am most grateful that my daughter is alert and oriented and “with us” again. I was afraid to leave Ashley’s side before – it was a challenge to do something as simple as cook dinner. Now I can work or do various things around our house without constantly fearing that my daughter is in danger if she is more than an arm’s length away.

This Father’s Day, I reflected on how uncertain my daughter’s future once was. I struggle with the fear of not being a good enough father.  But the best father’s day gift I received was seeing my daughter being able to stand, walk, play, speak and tell me she loves me.  Ashley still has seizures today, but I am so thankful for the childhood she has back and the life ahead that we can now see for her.

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About Adam Cobb

Adam Cobb is a physical therapist living in Allentown, PA. He is the proud single father of three daughters, Andrea, Ashley, and Allison who passed away in 2000. He enjoys going to the gym and playing golf when he can. But most of all he loves watching his daughters grow and achieve their goals.

Comments

  1. Karen Mitton says:

    As one who knows and loves this special young woman, I can attest to the huge difference the VNS has made and to what an incredible journey this has been for the family…emotionally and physically challenging, yet triumphant in finding the means to a better life for Ashley. Ashley is a delightful young woman who loves people, and her family has devoted themselves to helping make her life and her world a better place despite the challenges.

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