Joy and Anguish

The past week and a half have been an eventful and emotional roller coaster for our family. Seth experienced one glorious seizure free day right after we came home from the hospital, but this joyous occasion did not last. Instead, Seth has had one cluster a day (a cluster being full of multiple seizures in a small amount of time) ever since. Even more unfortunate is that each seizure has been worse than the last. Each seizure that has occurred within the past week and a half has sent me spiraling into tears.

The Saturday after we returned home, he experienced a cluster that lasted fifteen minutes. None of his clusters had ever lasted that long, so I called in to the neurology department to find out what to do next. On Monday, we were given a prescription for a rescue medicine that would stop a long lasting seizure. I took the medicine home feeling apprehensive and relieved at the same time. It was great to know that we now had a way to stop a long seizure, but I prayed I would never have to use it.

Seth experienced one of his most rapid clusters on Friday with seventy one seizures occurring in a seven minute time span. That particular episode was especially difficult to watch.  I had been instructed to call in every episode as they completed so it could be added to his chart. On Saturday, I finally asked the on call neurologist what the plan was to stop his seizures.

I was told that he would more than likely be given a second medicine on top of the ACTH. When I asked what medicine, the probable answer was to start Seth on Vigabatrin (the oral medicine). Vigabatrin is an antiepileptic drug. Since there is always a down side to any medication, we will have to be on our guard with this medicine as it can cause peripheral vision loss. Even with this serious side effect, I felt a huge sense of relief when I heard this was the next step in his recovery. Something just felt right about this choice, and for the first time in months, I felt at peace with Seth's IS.

On the flip side, Josh and I seem to have noticed an odd, unexplained link between Seth's seizures and his developmental milestones. With Seth experiencing the seizures, his brain should be slowing or regressing his development. In Seth's case,  however, he has not only been progressing each time a spasm occurs, but progressing rapidly. When he began having the clusters again that sent us back to the hospital, he attempted to crawl for the first time. He is now so close to truly crawling that I'm guessing he will be setting out to explore our house in roughly a week. He has also learned how to hold a sippy cup and can sit up from his belly all on his own. Tonight Josh was able to get Seth to stand on his own for about two or three seconds. While we are grateful that the spasms have not succeeded in slowing his development, we are both quite confused as to how this is possible.

Today I spoke to the neurologist about the next
step in Seth's treatment. We were given three options to choose from: Sabril/Vigabatrin, Topamax, and Onsi. Topamax can cause language delays and weight loss, so we quickly marked that off the list as he really can't afford to lose any weight. The Onsi could cause extreme emotional highs and lows. The Vigabatrin not only came highly recommended by the neurologist, but also just felt right to us. I can't explain the feeling - we just felt at peace with our choice.

He will begin treatment with the Vigabatrin hopefully on Wednesday. We are praying that our gut feeling is correct and that medicine will finally heal our baby. We are anxious to put this behind us as quickly as possible. Pray for good
results. If we see no improvement ten days after beginning this treatment, we will have to try yet another medicine.