In our case, Epilepsy wasn’t the first issue we had to deal with. When our son was 4 years old he suffered a massive stroke affecting 75-80% of the left side of his brain. After the stroke, he had 18 months of intense Physical, Occupational & Speech Therapies. He recovered remarkably well and was making progress in Public Elementary School. However, in the Spring of Taylor’s 4th Grade year, he began having Complex Partial Seizures that affected his learning, further complicating the existing learning issues from the stroke. So, after adjusting to our new normal after the stroke, it became time to adjust to a new normal with seizures. This consisted of:
- Trying different medications in order to get the most coverage with the fewest side effects
- Keeping seizure activity records every week on a calendar
- Managing his medications – proper doses and ordering before we run out as well as insuring they are given on time every single day
- Lots of follow up doctor appointments
- EEGs including hospital stays for 72 hour monitoring
- Looking for seizure triggers and eliminating where possible
- ARD Meetings at school
- Communication with School Nurse regarding seizure activity during the school day
- Providing the school with a Seizure Action Plan
- Exploring various options to help seizures including diet options and surgery options
I pray a lot and remind myself that God is in control regardless of what happens. I also think of some scriptures in God’s Word, the Bible, that encourage me.
I would like for people to not be afraid to befriend those with epilepsy. However, to overcome those fears, it truly helps to have an understanding of what is happening, why it’s happening and what you as a friend or a co-worker can do to help. It’s important to remember that people with epilepsy are just like everyone else–they just have seizures they have to overcome.
Before Taylor’s stroke, we had never even heard of kids having strokes, and we had not experienced hospitals and sick kids beyond an infant with the Croup. Since our experience with Taylor, the struggles and difficulties have strengthened us as a family and have allowed us to better relate to other families when they experience difficult situations.
