I have never really stressed about Annebelle’s focal epilepsy, she hasn’t had a focal seizure since she was a newborn and honestly with the exception of the medication that she needs everyday we’ve been pretty lucky on the focal epilepsy front. (Annebelle battled Infantile spasms as an infant but that was a whole different beast- it had different symptoms, dangers and treatments.) We experienced a terrifying week in the beginning of Annebelle’s life where she was having seizures everyday, multiple times a day, but her body responded amazingly well to her medication and the seizures stayed at bay for two and a half years. I was a naively optimistic mom during that time, I knew that there was a high chance that her focal epilepsy would never go away based on her MRI and brain damage, but I was confident that her medications would continue to work and keep her seizure free- they had for so long there was no reason for me to think they’d stop.
She had a lot going on during those years, her infantile spasms had turned into a dragon that we were unsure we’d ever slay, her development was on a roller coaster of regression- taking one step forward just to be thrown 10 steps back. We had funneled all of our focus on eliminating IS and getting her back on the right track, we didn’t have the time or mental capacity to worry about her focal epilepsy making a comeback. After a year her IS was finally under control and she was making leaps and bounds in the developmental front. We had finally come to the end of the tunnel, we basked in its light and swam in hope and optimism for the last few months. Our new shiny optimism was crushed by a freight train when Annie stopped mid-play one day and was stuck, frozen for 15 or so seconds. My heart dropped, I knew what this was. I left a message with her doctor and we hoped that this was a one time occurrence- that although one seizure had broken through but she’d be fine and everything would go back to normal. We upped her medication and over the next weeks she had a few more seizures but then they seemed to stop. A few more weeks went by and she still had not had another one so we were hopeful that the breakthrough was over.
A couple weeks after that our hopes were crushed once again when she started to seize. She began having a seizure every day and then two a day and three a day. We increased her medication again but to no avail. Things felt serious, she had never had this much seizure activity and we had no idea where it was coming from. We were starting to suspect that she was having multiple seizure types in addition to focal seizures and started talking about a Lennox-Gastaut syndrome. After a long talk with her doctor we were given new choices. She had already tired a handful of seizure medications and the ketogenic diet and nothing seemed to work. Her doctor had one more medication up his sleeve but because of the strength of the medication it would take several months to wean her on to it safely- this meant months of seizures until she was at full dose and we would even know if it would be successful. The other two option didn’t feel less scary for my tiny two year old. We decided to try the medication and hoped that it would work. We waited anxiously for three months while annie was weaned on the the medication only to be hit with another disappointment.
The final option is a surgical route, either a VNS inserted or a hemispherectomy. It's hard to describe the thoughts that go through your head when your child needs such an invasive surgery. There was a pain running through me knowing that her brain was going through this much stress and a heartache that she had to go through this at all. The idea of a surgeon cutting in to my child- let alone her brain- hit me like a truck. I felt it in my chest and through my body, I wanted to run and hide her, I wanted to pick her up and be a force that would protect her from anything that tried to get to her- but I didn't know how to protect her from her own body, I half-listened in my dazed state as the doctor explained the options. A Vagul Nerve Stimulation device could be inserted to stop the seizures as they are coming or a hemispherectomy where they disconnect her left and right hemispheres to help stop the seizure activity. Both sounded terrifying, how could I make such a decision? After failing her last medication option my husband and i decided to go the less invasive route and opted for a VNS, we meet with her neurosurgeon last week and feel very confident in her doctors and hope that this will help her finally experience seizure freedom.