Thursday, January 30, 2014

10 Years Seizure Free

As we drove to the restaurant to meet our 19 year old daughter for lunch my husband says to me, "Remember the time when she was seizing and I just held her in my arms while we sobbed sitting on the living room floor and you kept saying it would end soon?" The tears wouldn't stop running down my cheeks as I looked back through the first few years of her life and remembered how it all started.

I can pinpoint her first seizure at age two or three and I remember the phone call from my sister like it was yesterday. I rushed her to the Dr. office she had perked up by then and was walking and responsive.

We sat in the waiting room for only a minute before they took her back to a room. After looking her over for a minute, she asked to use the potty. I walked with her to the restroom and helped her. Just as she climbed off the toilet and had her pants pulled up, she collapsed into my arms and had a full gran mal. I held my composure the best I could while I opened the bathroom door and yelled for help. They all came running and took her from my arms and into the room again. I lost it. I knew this was bad.

The week in the hospital they did several tests to discover the reason for her fever and it turns out she had a severe kidney/bladder infection. Hindsight is 20/20 because from the time she was born to this point, she had lots of unexplained fevers but a few days of antibiotics usually put her right and we were on our way back to health. Turns out she had probably been having lots of urinary tract infections and we didn't know about it...but that's another story in itself. These seizures were labeled as febrile, meaning they came from the quick onset of a fever.

Fast forward another five years. We are in New Mexico visiting Nona with all the cousins. They were all sleeping in the living room while the adults slept in nearby bedrooms. Early the last morning of our trip, our 8 year old Vance came running into our room telling us that Marly was shaking all over and it woke them up. Ben jumped out of bed and ran to her. It took me a few minutes to get decent before I went out and by that time her seizure was over. We went to the ER and they couldn't find anything wrong. They sedated her pretty well and we got in the car for the longest eight hour drive of my life.

We didn't see any grand mal seizures after that but about 9 months or so later we would notice moments when she would be in the middle of a sentence and then just go quiet, like she would zone out and we couldn't get her attention. I called a neurologist and made an appointment. He called them absence seizures and told me not to worry. We started her on some medicine and while it seemed to help, she still had some on occasion. We let her teacher know it wasn't a big deal but if they became a problem to let us know.

Several months later, I went to wake her for school and I could tell she had wet the bed and was taking forever to wake up. She was breathing fine and I assumed she had a seizure. I called the neurologist and he told me to call an ambulance and she had two more on the ride to the hospital. That began a 5 day nightmare of seizure medicines and cocktails to get her seizures under control. She would have them every 20 minutes or so 24 hours a day until the medicines finally started to kick in. We brought her home and since she was slowly having less and less of them, we were able to get homework from her teacher so she could stay caught up with school.

She was lonely and missed her friends because if you know anything about Marly, she is Miss Social. I called the teacher and the nurse and asked if we could meet to discuss my options.  Her episodes were only lasting 90-120 seconds and they were very small. Really, the only struggle with her seizures were that she would be incontinent during one. We solved that by having her wear a pull-up to school. The teacher was so kind and helpful and I could tell she would do whatever it took for her to be back in class. We agreed that if she were to have a seizure during class that the teacher would make sure she was safe and send someone for the nurse. As soon as it was over, she would go with the nurse to be checked out. At this point, she was so quick to come out of them, she was fairly responsive and could walk to the office. Marly kept a supply of pull-ups in the nurse's office so nobody would even know. Each day a different friend would be responsible for running to get a teacher if something happened on the playground or during lunch. I felt like we had all the bases covered and I assured the teacher that if it ever seemed too much of a burden that we would try something different.. Everyone in her class learned not to panic and how to take care of her and because everyone loved Marly, she never had to deal with bullies or anyone making fun of her...luckily.

Slowly her seizures got further and further apart till the last one happened on January 31st, 2004.  She remained on her medicine for another two years when the Dr. told us we could slowly wean her off. That was a scary day when she took her last small dose. We planned it so it would be summer time and mostly close to home. I secured a position at girl's camp so I could be nearby in the case of a seizure but it never happened.

At our traditional Seizure Free Day lunch date
I should add that she had countless priesthood blessings and many prayers go up in those few years she struggled. We talk about how it changed her perspective on the necessity of being kind to everyone because you never know what others are quietly going through. We were able to educate others on the symptoms and how to treat someone having a seizure. I spent more than one conversation with a mom whose child was recently diagnosed with epilepsy and we cried and cried together.

I still cry, but today they are tears of gratitude for the growth that came to me as a mother because of this experience. I'm certainly more calm and less reactive to medical emergencies (my kids say my catch phrase is "suck it up") and I've watched as a loving Heavenly Father blessed my sweet daughter with the strength beyond her years to get past this medical issue. I have perspective as well to know that my story is nothing compared to those I've met over the years whose children have suffered much more than we did because of their seizures.

Every year on January 31st, we celebrate Seizure Free Day by going to lunch with her. It's a tradition I hope never ends. So Happy 10 year anniversary my sweet girl. I feel blessed to be your mother.

2 comments:

  1. Great article. One of my best friends growing up is epileptic. I have watched as he and his parents have tried every combination of medications and procedures available to help cure his ailment. He is 23 today and they still look forward with hope to the day when he will be seizure free. Your article sends a message of hope and faith in the power of the Lord to heal us by His love, albeit in his own time and in His own way.

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    1. Thank you Marcus! I am glad you are a great support for your friend. My daughter had many good friends that helped her through. There is hope and we both know the Lord sometimes heals us in ways we don't expect. Many blessings to you and your friend.

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