I realize that it has been a long time since I have written anything about our life with epilepsy. Since 2014, we have been on 7 different seizure medications, plus multiple dose changes. Only once in all this time have we been considered “medically controlled.” This means that the medicine, Zarontin, was controlling the seizures but we weren’t seizure free. This lasted for about the month of October in 2014 because Sierra had a growth spurt which caused the medicine to not work the same. A blood test showed that her levels were too high and that we would need to add another medication instead of just increasing the Zarontin. That did not end well.
After October, 2014, we started having behavior issues in and out of school. At this time, Sierra was only in Kindergarten at age 5, and she only weighed 32 pounds.She was literally the smallest one in her class, but she became the class bully. She was hitting, kicking, biting, throwing things… you name it and she was doing it. In March of 2015, Sierra’s behavior was out of control and she ended up choking another student with her epilepsy alert bracelet. Thankfully, the other student wasn’t hurt, but my husband and I decided that we were going to home school her.
Homeschooling wasn’t an easy decision, especially since I was working at the time. However, we knew that we couldn’t let her keep hurting other people while we tried to sort out her medication. We tried two other medications before we got to Lamictal. Her neurologist said that she had no other suggestions if this didn’t help and to get a second opinion.
In September of 2015, Sierra developed a severe rash reaction to Lamictal. This rash covered her entire body and put her in the hospital for three days. No one knew what the rash was at first; we got everything from “it’s a bug bite” to “I don’t know.” It’s very unnerving to hear a medical professional tell us that they don’t know and to call someone else. We ended up taking her to the Children’s Hospital and received the best care. She seen about 14 different doctors to get a final diagnosis, but they were all working together and communicating to get us the best care. We left the hospital with a new neurologist and an appointment for a follow-up a month later.
In February of this year, Sierra had her first tonic clonic seizure. Sierra and I were at church and my husband was at work. She started acting strange, like she had lost all muscle tone, and just wanted to be held. While I was holding her, she started convulsing. Luckily, it only lasted for a few seconds; afterwards, she lost consciousness for about an hour and a half. Since I had known that this was always a possibility, I had done quite a bit of research to make sure that I knew what to do when the time came, and I was prepared. Sort of. While I held her while she was sleeping, I had all these thoughts running through my head. What if I had done things differently? What if it had been worse? What if I hadn’t been holding her? It was awful.
We have been extremely lucky that it was her only tonic clonic seizure so far. We have also been blessed with a good neurology team and an amazing family. Homeschooling is hard, epilepsy is the pits, but my daughter is the light of my life and I wouldn’t change her for the world… except maybe getting her to listen more! 😉