The Seizure Monster

As I dosed out Paul's nighttime meds tonight, I am a little taken back as to how many syringes are on my counter ... Some are vitamins and supplements but the batch has certainly grown over the past couple of years.  Each med that has added has a story behind it... So here is the tale of the one that keeps the seizure monster away.

Paul's night meds.

I live in fear of what I un-affectionately refer to as the seizure monster.  It is very common for kids that suffer a brain injury to be diagnosed with epilepsy ... we have been lucky enough to keep this one off the list so far.  I watch for any odd behavior like a hawk ... it is always in the back of my mind.

Paul seemed to be doing well for the first 9 or so months of his life until he started jerking when he was trying to fall asleep.  He body would jump repeatedly and he would wail for well over an hour before he could finally rest.  I would be in tears.

I immediately recorded these episodes and sent them to our neurologist.  He agreed that we needed to do an EEG and see what was going on.  Micah got the honors of accompanying P to both of the sleep deprived EEG's that have been ordered. 

They make us wake him  up really early and then flash crazy lights in his face ( these things are known to induce any abnormal activity or potential seizures).  Then they just expect him to fall asleep so they could record what was happening using a bunch of probes glued to head.    It is not a pleasant experience but the worst is getting that glue off .... Grrrr. 

The results were not exactly what we had hoped for.  Although, we have never seen Paul have a clinical seizure, his EEG is pretty much a mess.  I think maybe that is what the medical report actually said ... j/k.  It is full of activity that coincides with seizures, though. 

Soooo.... We made the decision to start P on an anti-seizure med called Keppra to hopefully keep him from having any full blown seizures which they felt could likely happen.  The risk being that Pauly would stop breathing during a seizure ... I just couldn't risk further damage. 

So, we added the Keppra to the daily cocktail of meds that my Pauly boy gets and crossing my fingers that the next EEG takes it back out!