On Wednesday, my 9 year old daughter and I took the 2 hour trip to our pediatric neurologist. It was a regular appointment that came about a little sooner than it normally does, because she has been having increased seizure activity. Yes, my daughter has epilepsy. Sounds scary doesn’t it? It actually isn’t (anymore!).
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| On her 6th Birthday, about 6 months after she was diagnosed. |
I remember one time, as a child, my friend’s dad gave a lady a ride home from a baseball game we were at. My friend explained to me that the lady had epilepsy and that she could have a seizure, so she wasn’t allowed to drive. I sat there and stared at her through the back window of the truck we were riding in (in the back, when it was still legal!), half scared, wondering if she’d have a seizure any minute, right in front of us! I was imagining what we’d do and how scared I’d be. Little did I know back then, that I would be having a little girl of my very own with the same issue.
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| Easter, 2011 |
When we first figured out what was going on, she was five years old. She kept hiding her face in her hands, telling me that her face felt funny. I never noticed a problem and couldn’t see anything as being different, so I would hug her and tell her to go play again. Finally one day, we noticed that one side of her face looked like it was twitching. I made her a doctor appointment and he decided she must have a nervous tick that manifested itself in facial twitching. Of course, he’d never seen this happen and was only going off of what we had told him. Time went on and she began falling down and jerking one side of her body while she had just been walking around. Eventually, she would lose bladder control each time a seizure would hit. After a couple of large knots on her head, we bought her a martial arts helmet that we required for her to wear around the house until the doctors could figure out what was wrong with her. It felt like an eternity! The doctors couldn’t get us in as soon as we would have liked, but finally, we found one that would let her come for an EEG. They couldn’t get us in to actually talk to the doctor for another couple of weeks. Right when they hooked her up to the machine, she had a seizure. Even though we never liked her to have a seizure, that specific seizure was God’s PERFECT timing. That doctor stayed in the office over his lunch hour so he could help us. What an answer to prayer!
After the EEG was done, he wanted a MRI done as well. I remember the day we went in to hear the results of the MRI. I had let fear creep in so deeply. I was so scared they were going to tell me that my little girl had a tumor or something else seriously wrong with her. I was so relieved when I was told that all she had was epilepsy. I know, I really said “all she had”. Yes, epilepsy is a big deal, but when you realize how much bigger it could have been, you are thankful for the smaller of the diagnoses. Once we knew it was epilepsy, we were able to begin trying out different medications to hopefully get her seizures under control. First, he tried Keppra, with no success. Next, he mixed Keppra and Trileptal and finally, we were able to get some relief from those seizures! Praise God!
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| Here she is today, at 9 years old |
Since that time, her seizures have been controlled with medication. Every so often, there is seizure activity that begins to creep back in, usually when she’s crossing from wake to sleep. When this happens, either we’ve been late on her doses of medication OR she’s grown enough to where we need to increase the amount of medication that she is taking. Thankfully, the doctor has told us that her specific type of seizure disorder is called “Benign Rolandic Epilepsy”, which to us means that she should grow out of her seizures around puberty. We are praying that to be the case! If not, I know that God will give us the strength to endure the battles that will come as she grows into an adult.
2 Timothy 1:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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