Sunday, March 25, 2012

A Good Cocktail...

Danielle had another EEG the week before last.  This experience was much better than our first EEG.  It wasn't long after the electrodes were placed that Danielle was calm in her bed.  My focus shifted to the monitor that was recording the study.  The horizontal lines skipping across the monitor looked chaotic and messy, much like it did during her first EEG.  What does a normal brain wave study look like, I wondered.  I spent an hour... okay, maybe two, on a very slow Internet connection googling "normal EEG," "abnormal brain activity," "EEG, Infantile Spasms."  Finally, I decided I was torturing myself trying to analyze what I was seeing and I covered the monitor with a blanket.  Out of sight, out of mind... right?  Not really.  I have been wrecked with worry about Infantile Spasms, and this day that she was scheduled for her EEG was an exceptionally bad day for her.  She spit up shortly after she took her medication on that morning.  She had a cluster of spasms early in the afternoon, and another in the evening, which was recorded on the study.  Both episodes were severe compared to what we had been seeing in the past few weeks.  This was a bad day for her to have an EEG.  I thought for sure the doctor would give me bad news that she didn't see any improvement.  But what if it was because she spit up her medicine?  Should we switch to another medication?  Should we wait until they can get her on the schedule for another EEG?  Infantile Spasms is not something you want to waste any time treating.  She received her 8pm dose of Topamax and she did not have any episodes during the night.  I didn't think about looking at the monitor after her medication that night.  I was too busy trying to soothe Danielle.  She was extremely fussy.  The electrodes are very uncomfortable, especially trying to sleep with.  We spent most of the night in the hospital chair, hushing, rocking, nursing, repeat.

I saw Danielle's neurologist last week on Tuesday, expecting to hear the results.  I was upset when I learned that she didn't yet have a copy of the study, even though I had made sure to notify the hospital that Dr.O needed to have it before our appointment.  I had seen two neurologists in the hospital when Danielle was diagnosed, and I saw them both again at their office for a follow up before I decided who we wanted to stay with.  The EEG was done at Children's, but the awesome doctor I had decided would follow Danielle is in the INOVA group.  I wasn't expecting that it would be such a problem to get a copy of the study.  Dr.O had her nurses working on getting a copy of it, and anyone who knows me well is certain that I too, was taking action, with hard-driving ambition.  Well it turns out that the doctor I chose, a woman, is a firecracker too.  After getting on the phone with someone in management at the hospital and deciding they weren't moving fast enough, she decided to take action.  She drove in to the city after her day should have been over, marched in to the neuro-sciences department and insisted that she view Danielle's EEG.  I love her.  I love her for caring enough about my baby to take her personal time, and endure city traffic to provide her patient with the care she deserves.  I love her even more after hearing her on the phone say that Danielle's EEG looks "beautiful."  Beautiful!!  It looks beautiful!!  I wasn't expecting good news.  It was such a relief to hear.

Danielle isn't completely seizure free yet.  Her EEG did show "bursts of abnormal activity."  The Topamax is working but it might need some help to get the job done.  She'll be in the clear (from a cardiac stand-point) to use steroids in about two weeks.  If she's not yet completely seizure free at that time, the doctor will add a small dose of Pregnisone to her treatment.  Her doctor is confident that this will be effective.  Apparently Topamax and Pregnisone make a good "cocktail."

I've had some people ask me what it looks like when Danielle has an episode.  For most of us, when we hear seizure, we think convulsions.  Infantile Spasms can be easy to miss and sometimes go undiagnosed for some time.
Notice she is turning her head from side to side.  She is difficult to engage.  Her arms go up and legs come toward her body.  Her face makes a startled-like expression.  Spasms at 0:1, 0:12 and 0:28.

1 comment:

  1. I am so glad to hear that you have seen some improvements with Danielle's IS. My son, Ben, went through Infantile Spasms as well. I was wondering if there had been any discussion regarding using ACTH? It worked WONDERS for Ben. Just curious.