Hypsarrhythmia is back-follow up from today's appointment

We had a good appointment up at UVA today.  It started out with a one-hour EEG, and then a visit with the neurologist.  Basically, Waverly is not just having Infantile Spasms, but she is in hypsarrhythmia again.  That basically means that her brain waves are chaotic and disorganized.  This impedes development (as well as causes the Infantile spasm seizures).  This isn't a surprise to us, but still not great news (as opposed to just having the IS alone without that brain pattern). 

She started her new medication (vigabatrin, or Sabril) on Sunday night, and we are increasing it to two times a day now.  She was on prednisone again just for a few days until we were able to start the vigabatrin, so today was her last dose of that. So now it's just wait and see if the vigabatrin ends up working.  Most likely she'll be on it for at least 6 months.  She's been having the IS most every day, although only a few a day (yesterday only once, and so far none today!).  She has been quite the grouch, though, from the prednisone we are assuming.  She's also been a little sleepier than usual (we think due to the new medication). 

One funny thing happened at the appointment.  I had just passed Waverly off to Johnny for some reason (can't remember why).  A minute later we heard this explosive sound from her diaper.  We both grinned and then he moved her forward to expose what he already suspected.  She had exploded out of her diaper, onto her pants, up her back, onto Johnny's pants, and onto the chair!  Right in front of the doctor.  So we had our discussion with him while cleaning up the little mess that she had left behind! 

Below is a photo comparing a normal EEG with an IS/hypsarrhythmia EEG.  Since I'm an educator by nature, I enjoy being able to learn about all this and share with others.  (Although know that I'm sure I make plenty of mistakes in my explanations and interpretations!) 

http://www.chp.edu/CHP/Infantile+Spasms