Seize The Day - Part 2: Clinical Trial & Error

We initially chose Stanford over UCSF for Neurology, because of the proximity to my mother's house. We could stay over and have her watch OLO. The neurologist said they do not medicate children for one suspected seizure, but she had FMO go to the hospital for a 30 minute EEG. MAO had to hold him down to get the procedure done. They attached electrodes all over his head and we made sure he didn't pull them out until it was over. No one's favorite half hour in history. The results were negative for seizure activity.

That was a Thursday. By the weekend FMO was back in the ER after multiple seizures and uncontrolled vomiting. They gave him "rescue meds" and started him on Keppra.

Within a few months, he returned to Stanford for an MRI, results normal. He did fine on his meds for a while, then started clustering after a growth spurt. He did alright again after a med increase. Then, another growth spurt and more clustering. We eventually had to switch to UCSF, since insurance would not cover a Video EEG at Stanford. We were fine with the switch, since it was difficult to get his Stanford doctor on the phone anyway. After a bunch of red-tape, he had the VEEG at UCSF. The purpose of the VEEG is to trigger seizures and catch them on video and EEG. So, they took him off his meds. He hated getting the electrodes put on, but once they were on and his head was wrapped he relaxed.  He cooperated with a light trigger test and a hyperventilation test, both negative. We had a visit from his aunt ROK. I drank a Rockstar and kept him up very late, since exhaustion is a trigger. I woke in the morning to nurses bringing him back into the room after he tried to leave. I found out later he had just had a partial seizure. Around lunchtime, he went to the bathroom. I gave him privacy, but the nurse came in and said they were observing a seizure on the EEG monitor. We went into the lavatory and he was having a complex partial. When he came out of it, he was nauseated and slept, as per his usual post-ictal behavior. The neurologist and team met with me to explain that FMO now had a diagnosis, Temporal Lobe Epilepsy. He has two types of seizures, partials and complex partials.

The doctor put him on a higher does of Keppra, which did the trick until the next growth spurt. After another increase, he was on the maximum dose. Once on the maximum dose of Keppra, the next option presented was to add Lamictal. He had a skin reaction while titrating up at a slow and tiny incremental rate. Back to the ER. His was not classified as the potentially fatal Stephens-Johnson reaction, but they don't mess around. If you get a rash, you stop that medication.

FMO has had a major issue getting to sleep at night for years. Around the same time as the Lamictal reaction, we tried giving him Melatonin for sleep. It worked amazingly. Then I found out I had given him too much and he seized. We started again, on the correct dose this time, but fairly soon, he had breakthrough seizures again. We suspected that it was related to the Melatonin even at the correct dose, so we stopped giving it to him. If  the choice is my sleepless nights or his tortured his days, there is no choice.