We had the EEG at Children's Hospital in Los Angeles. Children's Hospital LA is one of the most depressing places I have ever been. It put this whole seizure situation into perspective. For the EEG, they strategically placed electrodes all over Lila's scalp to track her brain activity. After the electrodes were in place, they wrapped her head in a towel. She looked like she was at the spa...albeit a very depressing spa. They ran the EEG for about forty-five minutes. During the test, they were able to catch one of her seizure episodes. Hooray for that! Later that afternoon, our neurologist called to give us the results. She determined that Lila has focal onset epilepsy. She listed off some of the things that could be causing the seizures, i.e., cortical dysplasia, tuberous sclerosis, or idiopathic seizure activity. We took in all of this info and had ourselves a good-time with Dr. Google. In the future I am NEVER going to visit Dr. Google again. I cried buckets of tears as I read what cortical dysplasia and tuberous sclerosis were. The rest of the week was a haze of crying, being depressed, eating chocolate cake and popcorn for dinner, and wishing that the seizures would end or that the Keppra would start working.
Friday was the first day in a long time that Lila started off as her old self. She was playful, energetic, she almost rolled over and she only had one seizure all morning/afternoon. It was terrific! Around 3:30 PM, she had a seizure followed by eight more that evening. We were so bummed out. We thought we were making progress. Saturday morning we called the neurologist to ask about putting Lila on another medication. She called in a prescription for Zonegran to be used in conjunction with Keppra. The rest of Saturday afternoon was spent watching Lila sleep and have seizures. Saturday night, our friend Brenda invited us to have dinner at her house. It was nice to finally get out and not be prisoners in our own home. We started Lila on the Zonegran that night. On Sunday we once again got out of the house. We went out for lunch, ran some errands, and went by St. Monica's Church to have a priest bless Lila and to say some prayers that the MRI would come back normal and that the seizures were idiopathic.
Monday morning we showed up at UCLA for Lila's MRI. The doctors and nurses all marveled at how social and chubby she is. The anesthesiologist came by to explain how he was going to sedate her and that she would return to her normal self shortly after the procedure. The procedure took about two hours. It usually only takes forty-five minutes but Lila was pretty active and they had to give her more anesthesia. Tuesday morning we had our appointment with the Neurologist to get the results of Lila's MRI. Idiopathic -- meaning no known cause of the seizures! Hooray! We both felt like the weight of the world had been lifted off of our shoulders. When else in our lives will we be completely overjoyed for there to be no information or cause? In addition to this great news Lila has not had a seizure since Sunday afternoon! Her last seizure happened immediately after we left the church. Not sure how to interpret that, but I'm grateful.
Our next appointment with the neurologist is in two months. We will be tracking Lila's development to make sure that she remains on track for her age group. Currently, she is on track and above in her development. Proud Mama talking right there. Right now we are enjoying every single second with Lila and hoping that the seizures continue to be controlled by this new cocktail of medications. We're hopeful that she grows out of the seizures and that her future is as bright as it is for any other child her age.