We got back yesterday from a three day/two night stint in the hospital figuring out what is going haywire in Leo's noggin.
He just hasn't been himself for over a month and this past two weeks the seizures have ramped up into a whole new level for him and us. I don't have to say that it was scary. Wait, yes I do, because it always helps my emotional state to say or write things as they truly are. I felt completely bowled over by the uncontrolled and wild seizures that I felt were eating up my bright little boy. The worst of it was that I wasn't being taken seriously at the hospital. I felt like I had to run a triathlon filled with an obstacle course at the end of which there would be a phone that someone would actually answer intelligently and helpfully. Finally I threatened and coerced enough semi illiterate secretaries to in their turn, bully the orcs in scheduling to actually get my son in for an EEG before the snow flew.
Once Leo was in, things went a bit better.
The EEG went on as expected (lots and lots of tears and high pitch howls), but once it was all stuck to his head Leo pretty much left it well alone.
After a fitful night for all of us, the EEG results were quite worrisome.
The right side of Leo's brain was racked with almost constant seizure activity, which created some hefty inflammation, and which in it's turn, caused even more seizure activity.
Can you imagine hosting WW2 in your head 24/7? The guy didn't even get a break at night, in fact the activity was even worse then with the seizure alarm going off almost continually.
Scary stuff you guys!
His doc admitted that if it weren't for even the slight and tenuous control that he did have from his old meds he would have been by this time intubated and in a coma.
But this is the Little Lion man after all, so even though he was feeling quite horrible with all the things going on with him and being done to him, he still managed to solider on with admirable courage and even some smiles.
He wasn't allowed to leave the room, so he stood in the threshold as often as possible and flirted with the nurses going by.
Even though they booted us out yesterday and we were of course happy to go; Leo is still not out of the woods.
He may even have a new diagnosis of something called Lennox-Gastaut syndrome (LGS).
"Also known as Lennox syndrome, is a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems."The age of onset of seizures is typically between 2 and 6 years old, though onset can occur at an earlier or later age. Daily multiple seizures are typical in LGS. Also typical is the broad range of seizures that can occur, larger than that of any other epileptic syndrome. The most frequently occurring seizure type is tonic seizures, which are often nocturnal (90%); the second most frequent are myoclonic seizures, which often occur when the person is over-tired.
Atonic, atypical absence, tonic, complex partial, focalized and tonic–clonic seizures are also common. Additionally, about half of patients will have status epilepticus, usually the nonconvulsive type, which is characterized by dizziness, apathy, and unresponsiveness.
In addition to daily multiple seizures of various types, children with LGS frequently have arrested/slowed psycho-motor development and behavior disorders."
Sounds fun huh?
Chances are Leo will knock this thing out of the park too, just like all his other "handicaps."
Right now Leo is loaded with steroids and starting a new seizure med in addition to his other two. Since he started these meds on Saturday I already notice a difference in his behavior and general well being. He has a sparkle in his eyes again and a little spring in his step, though that may be from the steroids. Today he has had half the seizure activity from yesterday and a night of uninterrupted sleep. I can only hope and pray that this trend will continue until Leo will be whole and well again!
It is not all bad about this new diagnosis. Because of it it seems like Leo can qualify for a unique cannabidiol study in the UK which our hospital happens to be part of. Other than Mass General, they are the only two in the country that are partnering with the UK on trying to figure out a way to use the helpful elements of cannabis for healing epilepsy. Hopefully we will know more soon about this...
It is also his birthday.
What hasn't this kid gone through in his five years? And what wouldn't I give to make it different; make it easier and make it better? What wouldn't I do so that this cup would pass from my son? How many tears have I shed in fear over these years, how many times have I sat helpless and heart sick, gently stroking his seizing body? What I would give for him to have a birthday party without being sick with worry over the future?
But life has a funny way of turning things around, because it's not about my weakness after all, it's about his strength. And that has never failed. Not once. Not like mine.
Hopefully there will be more answers and especially more improvements this week. All I can do is pray.