Baby Steps

M had her follow up EEG this morning.  I LOVE our Neuro in that she always reads it and sees us immediately following to discuss what's next.  Today, she walked into the room with a nice smile on her face.  M's EEG has improved.  The activity on the left side of her brain looks....almost.....wait.....get this.....NORMAL!  I'm not sure we've ever heard that word out of any Dr.'s mouth with regard to M in any respect.  The right side is still showing lots of disorganization and spikes (more on that in a minute), but not necessarily hypsarrhythmia. This is really excellent news.  She started to discuss weaning her off the Sabril (her IS med), but I cut her off.  She's only been on it three months and her response has been really good.  That medication brought her back to us and I'm not quite ready to take the chance of going backwards.  We'll continue it for three months and if she continues to do well, begin to wean.

So, the right side.  That's another story altogether.  The right side is where the bulk of her damage is.  Despite her two Grade IV bleeds being on the left and the one Grade III bleed occurring on the right, it is where she has had the most shunt trouble, thus the most surgical intervention.  Back in February, in one final attempt to control the fluid in her right temporal horn and right ventricles, our neurosurgeon filleted the entire ventricular matrix.  Sounds lovely, right?  In any case, it is also the location of most of her PVL.  The disorganization is to be expected, as is the left-sided hemiparesis that she has.  The spikes are new and are an indication of a new type of seizure.  We were told when she was diagnosed with IS that she was at very high risk of developing other types of seizures or even Lennox-Gastaut Syndrome down the road.  We've tucked that info away in the back of our brains to worry about another day.  Over the past few weeks we've noted some atypical behavior and questioned if it was seizure activity.  Today, M's neuro diagnosed her with Complex Focal Seizures.  It is very possible this new type of epilepsy is replacing her IS.  She is starting a new medication and hopefully she'll respond well to it and we'll get good control quickly.  We're also adding an Omega-3 supplement.

Overall it was a good news/bad news type of day, but I walked away feeling very positive.  Small victories and baby steps are what we thrive on.