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.
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 She was dark and withdrawn, preferring not to stay home.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!
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.
What an amazing story you’ve shared with us today. I can’t imagine how stressful it must have been over the years watching and wondering what was causing your “baby” to have these seizures. I don’t know anyone personally who has suffered from epilepsy, but what little I know about it is enough to know that a cure is needed. Sherry, you have shared so much of yourself and your talents with me on a daily basis that I felt compelled to make a pledge towards Kate’s Bug Bug Team. How wonderful that you, your girls, their friends, and your friends, are walking the walk, not just talking the talk. Thank you for sharing your story, and all of your talents with us, each and every day. Best of luck in your fundraising efforts and on your walk.
Kate & Mallory, y’all are lucky, lucky girls to have a Mama like Sherry! And Sherry, you’re *such* a good Mama. I’m so proud of you for getting out there and helping raise money that will go towards researching a cure!
I am more than happy to help out. You can count on me for any thing I can do to help you.
TFS your story Sherry. I have a friend who’s son (hmmm….he must be 9 or 10 now) started having seziures when he was 4 (or they were noticed then) Like you said, a seziure doesn’t have to be the grand mal type (although, he did have some of those too). Many of his seziures were “staring into space”, some were slight twitching….some affected his walking or speech (he was having over 20 a day, not all the same type!) I can’t imagine how scary it must be to find your child unconscience or watching them go thru this.
I’ve lost contact with this friend (long story) but I really need to follow up on her and see how everyone is currently doing.
I will also look into your daughter’s walking goal and see if I can help!!
Sherry, Bless you and yours. The uncertaintity is the worst. I went thru this with my 3rd daughter. The anxiety you feel is a natural one, we all have it and it will never go away, but the advances in medicine are such that this is no longer a hidden closet disease. My daughter is now 47 and has been diagnosed as petit mal in remission. We don’t know if she will ever have another seisure but all the family is on alert. But I do know how it is with you and yours.. God speed to all and remember “HE will not give you any trials HE does not feel you can handle. thoughts and prayers….MaryAnn
Hi Sherry
I will be happy to make a donation in honor of your daughter & your family.
Being an RN in a level 1 trauma center here in Cleveland and having worked at two Children’s Hospitals (Rainbow babies & Akron Children’s Hospital) i have had the wonderful opportunity to learn about epilepsy and the huge array of seizures that can happen. I’m glad she is doing so well and becoming a teacher, what a wonderful profession she has chosen. Good luck to her and although the medications make her feel strange and have side effects, they are most definately worth taking. i still struggle with getting my sister to take her medication daily!
Enjoy the weekend!
warmly,
becky
Thank you for sharing Kate’s story! You are both so lucky to have each other!
Having a son with epilepsy and other health issues, I appreciated reading your experience with the disorder. I admire your daughters ambition and hard work to graduate with top grades.
I hope you have good weather during the walk.
And there is no mistaking she is your daughter, she looks so much like you.
I wish I was computer savvy. We (Hanna Girls) need a little graphic on our blogs and a place to donate money electronically so it goes into an account for her fundraising. I have seen these things on other people’s blogs, but don’t know how they got them or how to set it up.
If something like that were to happen, we could have our readers (Ha! I have about 3) each donate a little something easy peasy.
Yeah, I am full of ideas, just not the means to bring them to reality.
Duh. I just saw the link on the side. looks like you have it all figured out. Hope you don’t mind, I just posted on the DT forum and encouraged donations from those who could.
Thanks for sharing Kate’s story with us Sherry.
[…] each and every one of you who have made pledges to The Bug Bug Walkers, Kate and/or me, for the 2008 Epilepsy Walk Around Kentucky. I have been so overwhelmed by your outpouring of support. Actually, I’ve sat here with tears in […]
[…] the Bad Side”. Rather than try to tell the story myself, here’s the link to “Kate’s Story“, as told by her mom, Sherry […]
Thank you for sharing your story. Seizures are definitely a life changing thing. I am so thankful there is medication to stop these. Our daughter Jaclyn would be dead without the meds.
Thank you for sharing Kate’s Story. My 8yo daughter was diagnosed with epilepsy one week before her 4th bday. What a journey it has been. I see so many similarities in our beautiful girls stories…
Much love and many blessings to the both of you.
What an amazing story, Sherry. I don’t know anyone with epilepsy and I learned so much. You and Kate are an inspiration!
Sherry, thank you for educating us about epilepsy. My late SIL’s sister whom I am custodian of has this and she has had it since she was about 3 years old and she is now 60+. It is completely manageable if you take your meds correctly. I wish you much success in your walk for this wonderful cause.
Pinky
Sherry-
Thank you so much for sharing your story. I was in tears. Our middle daughter, like yours started having seizures at 14. She had 3 grand mals several months apart and now just has petite mals which are controlled by meds. She is now 17 and for the most part seizure free. We went through two years of dark depression and change in personality until the found the right meds. She lost 4 years of memory due to the meds and has to work extra hard to remember things where before she just had to glance at them once. She isdoing well now, back to her own kooky self and looking forward to her senior year and college. All the best for you and your family on this walk!
My sister takes meds to control her petite mal seizures. She’s never had a grande mal, I cannot imagine the panic you must have felt, Sherry.
I’m inspired by Kate, who took the initiative and learn about seizure disorders and found the walk and got the family involved, good for you, Kate, actively seeking to better your situation and everyone else in similar situations! Best of luck in reaching your goal.
Oh, Sherry, my heart goes out to you and Kate. What a mom you are to share such a personal story in order to raise awareness and funds. I will be more than glad to make a contribution to the foundation in Kate’s name. You go, Girls – walk the walk!
Good for you for sharing Kate’s story! I have a seizure disorder too. I am 42, and have been seizure free for about 20 years. (It pays to read the side of your meds bottle and not drink alcohol – I just eat dessert!) I have a very very normal life! I am able to drive and get my kids where they need to be. I have 2 children, that were born while I was on my meds. The oldest went through withdrawl, the youngest didn’t. Strange! The only difference I can tell about myself now is that I tend to get tired easily. Is it the meds or is it that I am getting older? Best of luck to both of you on your walk!
Thank you for sharing this Sherry. I know very little about epilepsy so you are certainly helping to raise awareness! I cannot imagine having to do CPR on my own child – that must have been so completely terrifying. I’m very glad to hear Kate has been seizure free for over a year, my very best wishes go out to her! Best of luck at the walk!
I have several friends who suffer from epilepsy — and so few people like to “talk” about it! KUDOS to you for sharing what is obviously close to your heart, Sherry.
I wish you HUGE success (and huge bucks!) on your walk! GO SHERRY GO! 🙂
[…] would like to take a minute before I go today, to thank each and every one of you who have read Kate’s Story and made a donation to our 2008 Epilepsy Walk Team, Bug Bug Walkers. Your comments, generosity and […]
I’ve just come to your story from another blog, but had to stop and comment. Several years ago I began my journey down this scary road myself, having my first seizure at the age of 41. Some days I would have as many as 60. I am glad to say that medication keeps then somewhat under control now, but my brain and body just don’t quite work the same as they used to any more. My stamping business that used to include customers from all over the world, is just now starting to get going again, but no where near the level of what it once was.
And yet, we are all surrounded by a most amazing group of people called family and friends who will help us get through absolutely anything. And best yet, we are loved by a most gracious and mighty God who walks with us through the valleys just as He stands with us on the mountain tops.
You and your daughter are not alone! Take comfort!
Jennifer
Hi Sherry,
I was browsing through your blog, looking at all the wonderful work you do when I saw this entry. I also suffer from epilepsy. I have what they call TLE…Temporal Lobe Epilepsy. Left side is affected for me and they still can’t quite find the proper medication to control it. I still can’t drive and even though the partial seizures have happened less frequently, I’m praying for the day where they will never happen again.
Your daughter seems to have an amazing mother who went to great lengths to find out what was wrong. Kudos to you. All the best to you and your family and I hope Kate is well.