Wednesday, November 3, 2010

Childhood Epilepsy

Our oldest son's second major seizure lasted probably 2 minutes, but it felt like 10. Another mom was at the park with me and she ran to the nearby community centre to call an ambulance. I remember her telling me how amazed she was that I could stay so calm.

I guess I was calm. It wasn't the first seizure I had seen, but I HAD to be strong and remain calm. I wanted to be able to communicate with the health professionals. Plus more importantly, my little guy needed me to be able to comfort him when he woke up.

That seizure was the real indicator that we were no longer dealing with just breath holding spells and our son obviously needed a specialist. We were put on a waiting list to see a Neurologist and to get an EEG, a test that measures and records the patterns and location of electrical activity in the brain.

His case was quite mild and he didn't have another seizure for another 6 months, but the next was 3 months after that. Each one occurring without any visible triggers. One happened when we were having a blast decorating cookies. It was so sad to see that joy dissipate so quickly. I caught him before he fell off his chair, kept him safe during his 2 minute seizure, and then watched him as he slept it off the for the next 2 hours. The next came as we were getting him ready for a bath. I was so relieved he hadn't gotten into the tub yet, but I would have been by his side regardless.

By this point, we finally had a specialist working with us and assessing the situation. We were told that the our son had childhood epilepsy and he would need medication to keep the seizures under control. However, the neurologist expected him to grow out of it.

Obviously this news was upsetting but not a complete surprise. The plan was that if our son could remain seizure free for 2-3 years, we would eventually be able to wean him off the medication. We were cautiously optimistic with the likely possibility that his condition was temporary.

We started on Tegretol. It was a real struggle at first to get him to take the pills. He was 3 at the time and, remember, had a mind of his own. I wrestled with him for an hour that first day and had no idea how we would manage it everyday.

Chocolate was the answer. Can you believe it still took some coaxing, but mixing it in chocolate milk or chocolate pudding did the trick.

After a time we noticed the Tegretol was actually increasing some very small jerking movements. Our son would be walking or talking normally, would have a very slight jerk or shake and would then continue on like nothing happened. He did not do this before the medication. It was so slight that most people didn't notice, but it was my job to notice things like that.

Valproic Acid was our next option.

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