The Man with the Plan

A new mirror for my car - so I can see if she
has a seizure while I'm driving

We met with the seizure specialist yesterday -- not even 24 hours after Little Miss had two more seizures and ended up with a dose of emergency medication. After spending the previous day sleeping off a big old dose of Valium, she was dis-regulated... climbing on and off the exam table like a piece of playground equipment, unable to stay in one place for more than a few seconds, ignoring our repeated requests to settle down...

The doctor tried to interact with her, but she did not have time for him. She wiggled through his examination. Her pulse was too rapid. He had to test the reflexes in one leg three times. She begged to go home.

The hubs kept her safe as the doctor and I talked. We went through her history... normal birth (we guess), unremarkable first 10 months, placement with out family, early intervention, first seizures... We finally got to the past three months.

I repeated what I had been told by other doctors -- that she had some non-febrile seizures (seizure without fever) and some that had been classified as febrile. He asked me to clarify. I explained her tendency to spike a fever shortly after a seizure event. He asked if she was also ill at the time. "Mostly, no," I answered. "Just a fever that went away by itself."

He explained that in order for the seizures to be truly febrile, Little Miss would have had to also be ill. Then he asked me to re-estimate the percentage of non-febrile seizures. With a glance at my husband for agreement, I placed it at 80-90%

We looked at her brain MRI again. Those pictures that show the gaping right ventricle and the gray matter all squished up where there should be clear folds and pathways. I hate those pictures.

We looked at the video I recorded when Little Miss had her last seizure. I want so badly to delete that file from my phone, but I know I have to keep it -- for now... for further analysis.

He typed furiously as he watched the video, identifying characteristics and symptoms. He asked again if we saw any particular tendency for Little Miss's seizure symptoms to be more severe on one side. I told him we did not.

We talked about her medication... the 75 mg of Lamictal she takes twice a day. Her "morning circles" and her "dinner circles."

... and then he gave us his thoughts...

In his experience, the seizures were almost certainly the result of the brain injury. He pulled up the brain MRI again and traced the smooth curves of the left side of her brain, showing how the electrical charges could easily move from one point to the other. He did not need to trace the curves on the right side... toward the back there were almost none.

He suggested three medications and then eliminated two of them from the list due to side effects and likelihood of successful treatment. He told us how he believed that the Lamictal may even be contributing to the current increase in seizure activity. We were left with Depakote.

But for Little Miss, it's not so simple as weaning off the Lamictal and starting a prescription for Depakote. Because we've never seen any tendency for the seizures to take one side or the other (they are what are called "generalized" seizures), Depakote may not be a successful treatment option. We need to know for sure whether the activity is coming from the right side. And with two brief EEGs showing absolutely nothing, the only answer was a prolonged EEG.

We knew the recommendation was coming. If it did not, we were going to recommend it ourselves. We figured we could handle getting Little Miss wired up for a 24-hour EEG and then bringing her home for a day of her favorite things -- as we had seen so many other parents do.

What we weren't prepared to hear was that the EEG would probably be longer than 24 hours... that Little Miss would need to be hospitalized for it... that they would be taking her off Lamictal completely while she was in the hospital to try and trigger a seizure event.

We agreed.

The doctor gave us some final thoughts, including a scheduling timeline (ASAP) and advice to take Little Miss to the ER immediately if she had another day with multiple seizures. He gave me a business card and told me to have her admitted to the pediatric epilepsy unit.

The plan begins to unfold. It will take time and it will not be easy -- but I feel confident that we will at least get answers with Dr. G. And for that, I am grateful.