Kate’s Story

Originally published on May 22, 2008 – Kate’s Story

I was going to pay a tribute to my dad this afternoon, but have thought better of it. Instead, I would like to talk about something very near and dear to me. I also believe that this is what my dad would want me to do instead. This would also be more important to him than celebrating his birthday.

As most of you know, my oldest daughter Kate, has epilepsy. Each day is a struggle for her, even though she has remained seizure free for over a year now.

Kate and Will at induction

When Kate was in middle school, she started having episodes in the mornings. They typically were right after she awoke for the day and always happened in the shower. She would simply pass out. I would hear the change in the water and knew something had happened. When I would get to her, she was already reviving on her own, but was always pale and would end up having a migraine that lasted the rest of the day. We consulted her pediatrician, who had a battery of tests run, and they came up with nothing. Her pediatrician basically told us that it was menses related.

During high school, Kate never had another episode. She was, however, not my cheerful, happy go lucky girl. She was dark and withdrawn, preferring not to stay home. Part of this I blame on a boyfriend at the time, which is another story in itself, but she still was not the same child she had been in middle school. Now before you can say that it was just part of growing up, it truly wasn’t. Her moods were different, she didn’t laugh anymore and there was always fighting. She was still in the honors classes and keeping her grades up, but there was just something different. Kate graduated high school with honors and went on to enroll in the nursing program at Indiana University.

During her freshman year of college, she had her first major seizure. Once again, she was in the shower first thing in the morning, and fainted. I heard her fall, the water sounds changed and I broke the door down to the bathroom to get to her. She was lying in the bottom of the shower, lifeless, with the marble seat (that was attached to the wall) lying on top of her. I pulled her around where I could get to her, half in and half out of the shower and started CPR. When I heard her moan, I knew she was going to be okay and I could call 911. Have you ever seen a panicked mother trying to dial 911? It took me longer to dial three digits that it did for me to break into the bathroom and get to my daughter. By the time EMS arrived, Kate had revived enough to sit up, but was pale, clammy and completely disoriented. EMS decided to take her on to the hospital, only because her blood pressure was so low.

At the emergency room, they once again ran a battery of tests, to basically rule out and/or determine what was wrong with her. Finding nothing, they phoned our primary care physician who wanted her to see a neurologist. The following day we went to see her neurologist, who wasn’t quite convinced that there was anything neurological wrong with Kate. He was leaning more to a heart condition and had her wear a 24-hour heart monitor. He also ordered an EKG. Much to his surprise, it wasn’t her heart, it was epilepsy – generalized epilepsy in both frontal lobes.

Since being diagnosed with epilepsy, Kate has had a few breakthrough seizures, but the most significant was her last seizure a year ago last April 1. She wasn’t feeling well that morning, but went to work anyway. She was sitting on a stool at the counter, and fainted. She hit face first on a concrete floor, breaking her nose and busting her lip. Her employer called us after the fact. They called EMS first and they were there before Kate was revived to tell them to call me at home. One surgery later, to fix the broken nose, adjusted doses of medication once again, and she’s made it through a year.

What we learned was that Kate’s seizures start at night with the kicking of the legs and the fainting spells are the culmination and final stage of her seizures. There are many types of seizures and some you don’t even realize happen. Most people think that all seizures are like grand mal, where one stiffens and jerks. Not necessarily so. A child can be sitting in a classroom, staring off into space and the teacher thinks they are daydreaming, and in reality the child is having a seizure.

Kate is a senior in college now, switching from nursing to secondary education. She has made the Dean’s List numerous times and has been inducted into the Mu Psi Chapter of Kappa Delta Pi, International Honor Society in Education. She will be student teaching next year and is ready for it all to be behind her and to move into her chosen profession. What makes this truly amazing, is that Kate struggles to remember things. When she was younger she had a photographic memory. I could have her look at a list and then quiz her. She knew it all without any problem. Now her medications have made such tasks more difficult. She often has problems trying to find just the right word or remembering short term. She studies extremely hard to maintain her grades. What should only take her about an hour, now takes 2, 3 maybe 4. Let me say though, that with the proper diagnosis and medications, I have my happy, fun loving daughter back!

I have told you this for a number of reasons. First, to raise awareness of seizure disorders, and secondly to ask for your help. Typically this is not something I would do, but under the circumstances I feel compelled. For the third year in a row, I will be walking with Kate during the 2008 Louisville Walk Around Kentuckiana on June 21st. It is a 5K walk sponsored by the Epilepsy Foundation Kentuckiana, to support the more than 90,000 children and adults living with epilepsy in Kentucky and southern Indiana. We are joined each year by more and more people who wish to walk with us. Last year my entire family joined us and a few more of Kate’s friends. This year more of her friends are walking with us, all the family and even Jeanne Streiff (Inky Paws), who is flying in a few days early before we have to head out for Florida.

Kate’s goal has always been to raise $1,000.00 and we’ve never come close. This year, I would love to see her get to her goal, if not better it. She has taken such an active role in learning about seizure disorders and is the one who found the walk three years ago, and signed us all up. So here’s my plea! If you have ever been touched by someone with a seizure disorder, whether it is a friend or family member, please help us help others by making a donation to the Epilepsy Foundation in support of the Bug Bug Walkers. (Kate’s boyfriend calls her Bug Bug).

You can learn more about Seizure Disorders and Epilepsy at the Epilepsy Foundation.

To make a donation for the 2008 Walk Around Kentuckiana, please visit the Epilepsy Foundation Kentuckiana.

Thank you for reading Kate’s Story!
NEW SIG

PS: I’m editing to add some information that I just saw on our walk brochure.

  • A seizure is a brief, temporary disturbance in the electrical activity of the brain resulting in altered or loss of awareness, shaking, convulsing, confusion or sensory experiences.
  • Epilepsy is a neurological condition characterized by recurring seizures, also called a seizure disorder.
  • More than 3 million people in the United States, including more than 90,000 children and adults in Kentuckiana, live with epilepsy. This year alone, 200,000 will be diagnosed with epilepsy.
  • For 70% of people with epilepsy the cause is unknown.
  • Epilepsy is the most common neurological condition among children and the third most common in the United States among adults.
  • Epilepsy is more common than cerebral palsy, multiple sclerosis and Parkinson disease combined.
  • There are currently as many seniors with epilepsy who are 60 and over as there are children with epilepsy who are 10 and younger.

10 Responses to “Kate’s Story”

  1. Your daughter might be interested in trying Bowenwork. It’s a therapy that originated in Australia but is now worldwide. It is a gentle non- invasive therapy that resets the autonomic nervous system so the body can heal itself. You can read about the therapy and find a practioner near you at Bowenwork.com

    I have my own health challenges and Bowenwork changed my life. It’s kept me out of a wheelchair and has improved the quality of my life drastically. I have seen it work miracles on a variety of imbalances/diseases/pain.

    Please feel free to concact me if you have any questions.

    Sherry Johnson
    shrryjhnsn@cox.net

  2. […] Kate’s Story […]

  3. Sherry, I’ve just read this through — my sister-in-law had a aneurysm at 44, six years ago, and has seizures about 24 hrs a day since. She just had her right hippocampus removed and although they saw other damaged tissue in her brain and drained two cysts, she has been seizure free for 3 weeks! My brother is ecstatic and my sister-in-law sounds like her old self — she was allergic to all the meds — ALL of them! I know how the high the toll can be and I love hearing about Kate’s progress — DH is a teacher! :)

  4. Sherry ~ I just read through your daughters story and it touches my heart. When I was first starting in elementry school I had seizures and they diagnosed me with epliepsy. I can remember it was awful. Most of the kids in school were very helpful through it all. One day alone I had almost 40 seizures. And just as quickly as it started it stopped when I was about 11. I would be at the hospital once a week for one test after another and I was heavily medicated. But I can not tell you how thankful I am that it stopped.

    I will keep your daughter and family in my thoughts and prayers. I too would love to hear of her progress.

    Hugs,
    Joani

  5. i just found your blog through f.rush…what a story. i hope your daughter remains in “remission” (for lack of a better word)! i also have no idea how you and she feel about dogs, but there are some dogs who can sense seizures before they happen. that might be another option/addition to the drugs.

    please let us know if you meet/exceeded the goal in 2008 and what is the goal/website for 2010?

  6. Sherry… did you make your goal? 2008 was a LONG time ago and I just read this story and I must say I am SO touched by this, what a STRONG YOUNG WOMAN!!!! I only “know” her Mama from SCS and blog land however you strike me as a Stubborn woman! LOL (gal after my own heart) and I am SO touched by the love that just POURED out of this writing…

    Please post more of the comings and goings and notice for this years walk…

    COUNT ME IN SISTER FRIEND I’ll help, I’d walk with ya, but I am SO far away… you could come here and walk with me (in the rain, Western Washington) LOL

    Take care, BE GOOD **in a BAD WAY** at CHA!!!!!

    Blessings!

    kj

  7. I don’t know how I’ve missed this post after all my visits to your blog but this is the first time I’ve read this. Did Kate make her goal of $1000? How is she doing now?

  8. This beautiful tough apple doesn’t fall far from the tree 😉 She is quite a woman, and I will pray that God continues to show favor and bless her all her days 😉

  9. Sherry,
    I just recently found your blog. PLEASE post when the next walk is and I will do my very best to attend. I live in Avon, IN., just west of Indy. Thank you for sharing this with us.

  10. Just read this now, Sherry, and hoping all is well with Kate. My dad developed epilepsy as an adult and I can remember as a child how frightening a seizure can be. Can’t imagine with my ‘mom hat’ on how terrified you must’ve been each time you heard the shower water change. Hugs to you and Kate.

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