Sunday, June 15, 2014


We are home after a 5 day hospital stay.  Yuck.
Let me out!!

Baby jail

Scarlett has been having visible seizures for a few months.  For the last few years, she has had none (that we knew about); it was one of the few "expected" brain tumor effects that we weren't dealing with.  We noticed them right around her last MRI in March.  Her doctors tell us they can just start sometimes, with no new cause.  We had an EEG in April when we thought they were increasing; with confirmed seizure activity then, we began medication for them.  A few weeks later, when the medication did not seem to have any effect, we increased it.  And then increased it again.  Then saw another neurologist, who added a second anti-convulsant.  None of the medications worked, and the seizures have continued to increase in frequency.

Her seizures are not what most people think of: she does not fall to the ground convulsing.  The typical pattern is that her eyes tick to the left repeatedly, her left hand opens and closes and her upper body twitches for 5-10 seconds.  As soon as it is over, she is back to whatever she was doing, unphased by the interruption.  Sometimes, she continues to move - putting food in her mouth, playing with a toy - through the seizure.  If she is walking, she seems to sense it coming and can fall to her hands and knees safely, seize, then get up and keep going.  It is strange, but not particularly invasive to her.

On Tuesday, she had another MRI.  It was perfectly clear, so we are sure that this is not tumor-induced, which is fantastic.  However, that leaves a long and arduous list of possibilities.  We knew the seizures were continuing to increase in frequency, and we estimated 10 a day - that seemed like a lot to us.  As we sat in the clinic room with the nurse practitioner, Scarlett had 5 in less than an hour.  That prompted a discussion about how frequent they are really happening.  It was a startling realization that with that kind of pattern, she was likely having upwards of 50 a day.  This prompted her team to speed up their planned evaluations, specifically a 3-day long EEG that would give them a chance to look for patterns and a source of the seizures.  That day, Chris drove Scarlett to the hospital in the morning for the MRI, then home; back in the afternoon for clinic with me, then home again; when we got home, we got calls from the hospital that they had a bed, and they were ready for her that night.  She was admitted by 7:00pm.

EEGs measure electrical activity in the brain.  The patient is fitted with electrodes to pick up changes in the brain activity.  As the brain functions, it creates waves on the monitor connected to the EEG machine.  Seizures, which are like electrical surges in the brain, show as sharp spikes and abnormal waves.  Since Scarlett has had some strange behavior along with the seizures, they did a video EEG, so we had a video camera trained on her (and therefore us) at all times so that the doctors could compare her brain activity with her behavior in the moment.  To help the doctors track the seizures, we were to push a button when we saw one; that would mark the time and we would type in notes about what she was doing or what we saw.  The doctors were very impressed that Chris was catching almost all of the visible seizures within seconds.

In the first day, they got a reading on the actual frequency of seizures - more like 15 an hour, hundreds in a day.  And that's with medication already firmly established.  We only see some of them - they are often absent, where she might just blank out for a few seconds, others still follow the same twitching pattern we have seen for a few months.  Over the last few days, we have tried several things to get a handle on them - varying medications at varying doses and steroids - and are just now starting to see a change that we hope will stick.  She went down to 5-10 seizures a day early in the weekend, then only 1 in 12 hours overnight.  With that, they let her go, and will check in again soon to see where we are.

It's been wild, since this was the last week of school for me and I had to be packed up by Friday afternoon for construction to begin right away (and, in fact, they started on Friday, moving all my organized piles to the middle of the room to "help" me!)  Chris spent 3 nights back-to-back in the hospital while I visited in the evenings.  Finally, last night, I was free, so I stayed while he got to sleep at home.  We're readjusting to hospital life - we haven't been inpatient at Stanford for a really long time, and things are different (mostly for the better)!

Don't touch my baby!

The biggest change for us in hospital life is Scarlett.  She is mobile and gets bored quickly.  When she was an infant, she stayed in the crib or our arms without much complaint.  Now, we are managing a jumping, climbing, walking escape artist!  The medications kept her more sedated than usual, but she is still pretty lively.  With the EEG on her head, and the video monitor on her, it's quite cumbersome to move around, and she easily got tangled or stumbled.  Her favorite way to fill the boredom was to either eat - primarily graham crackers with crumbs everywhere - or to scoot her toy train around the room.
Jumping on the chair while wired up.

Just plain bored.
Despite the many toys we brought, she found the soiled linens bin to be most engaging.

The next steps are vague - there are many approaches to seizure management, and we are getting an overwhelming amount of information about them all as we learn more.  The doctors are working to find a medication solution that balances the sedation effects with effectiveness - stopping as many seizures as possible with the least impact on her daily life.  This is proving difficult, but is critical before the next phase is discussed: surgery.  She is slated for cranial reconstruction in July, so we need to make some big decisions on how to move forward.  According to our doctors, they would usually take several months to try to manage seizures before even discussing surgery.  However, with a brain surgery already on the books, we need to seriously look at the options before we move ahead or close any doors.

Daddy helping entertain her while the technician cleans glue and tape from her hair.

Cruising the hospital halls in the new push car - the highlight of her stay, besides ice cream on-demand.

It's great to be on the other side of that stay, and hopefully we stay out for a while, seizure-free.