Friday, 23 January 2015
He never does anything halfway, that kid. He continually surprises us with his ability to live through stupid shit.
The night before this all happened, I was talking with Jason about a friend of ours whose child was having surgery, and said to him, (forgetting that the universe is cruel), something about how grateful I am to have 4 perfectly healthy children.
The universe gave me 14 hours to gloat. Then it plunked bricks of karmic irony upon my stupid head.
The kids were off school the following day and celebrated by spending what would have been math class sitting in the kitchen watching 'Mr. Popper's Penguins', (which has subsequently been banned in our house). Out of the blue, he yelled that his eyes had gone all funny and he couldn't see. Before I got down the hallway, out he came, pinballing off the walls and furniture like some blind little sea creature (say, a squid, for example), and said he had to puke.
I took him into the bathroom, and he stiffened up and proceeded to have a full-blown-full-body-drop-down-onto-the-floor-and-shake seizure. I called 911. I'm smart that way. I pick up on the subtle stuff.
Liz came running downstairs- thank God for her unflappability (is that a word?) and hung onto the poor kid while I talked to the dispatcher.
And thank God for my awesome dayhome clients, all of whom responded to my panicked text with lightning speed- most of their kids were gone before the ambulance even got there, and the rest were gone within the next 15 minutes. I should probably give them a discount for scaring the crap out of their children.
By the time we got to the Children's, Squid's neurological assessment was fine, so they booked him for an EEG in a few days and let us go home.
When we had the EEG done, the tech told us that our family doc would have it within 7-10 days and they would call if there was a problem. So when we didn't hear from them for 2 weeks, we figured things were fine. I called them a few days later, though, and booked an appointment for him to follow up.
So we walk in the day of the appointment, get in right away, and the doctor tells us that the EEG was totally normal (thank God), and just to book him for a physical in the new year, and sends us on our way. As we’re packing up to go, he says ‘Do you want a copy?’ and I, with my constant need to know everything about everything, say yes.
And off we drive to McDonald’s. At the stoplight, I look down at it, cause I'm too lazy to put it in my purse and it's still in my hand, and no word of a lie, the FIRST WORD ON THE PAGE IS ‘abnormal’. And the doctor has had the thing in his possession for 3 weeks.
I thought I was going to have a heart attack. So I pull over into the first parking lot I see, and read the thing, and even to my non-medical eyes, it is VERY CLEARLY not a normal EEG, and says right on it that he needs to be referred to a neurologist.
So I call the doctor, cause I've literally only been gone 5 minutes, and he picks up the phone, and I ask him if he READ the report, and in his important doctor-ey voice says "Of course I did", and I suggested that he may want to reread it. Then there is a giant 5 minute silence (in which I assume he watches his medical career die in front of his very eyes), and he says "Ok- I see that now" (Now???? Fucking liar. That implies you read the thing once already, which we all know you didn't actually do.) "You need to turn around and bring him back in so we can get a referral done and we need to make a plan."
(Note- said plan includes him no longer being our doctor. Nor would I suggest that anyone in the area use Dr. Felicien Mbuyi at the Richmond Road Family Medical Centre for anything that requires his full attention. Like doctoring, or prescribing, or not killing you. His track record is not awesome. If, however, you need someone to do a half-assed job and pay absolutely no attention to detail, then I highly recommend his services.)
I went back to his office, and all he can do is apologize. I left Squid in the waiting room while he set up the referral, and while he’s typing, he’s apologizing, and I refuse to yell till I have the referral in my hands, but if he apologizes again, I may SNAP. He finally hands the thing to me, and everything I hadn't said in the past 15 minutes comes out of my face, and I can hear the front office staff chatting with my son, and their voices are getting louder and louder, in an obvious attempt to cover up the sound of my voice, which is not overly quiet to begin with.
You know how you get mad at someone, and later on, think of something you should have said and regret not thinking it sooner? That didn't happen. It was almost magical, really.
As I started to leave, the nurse and receptionist apologized one more time and my composure flew right out the window. I turned around and yelled “That’s great, thank you, and once I find out whether or not your negligence has harmed my son, maybe I’ll GIVE A FLYING FUCK!” And slammed out the door.
And then had to turn around and open the door for my kid. Who I had left behind in my rage. Not my finest exit.
So we stop at the new doctor’s office that opened up right by us, and I explain to the receptionist, and we have a new family doctor in a matter of minutes. When he came into the room, I handed him the results and he read it, looked at me, read it again, and says “He can’t possibly have looked at this!!" and then he says “You have to pay attention in this job- this is DANGEROUS!!”. And when I asked what he meant by 'dangerous', he says “Well, we aren't worried anymore that there might be something wrong with Squid- there is clearly abnormal electrical activity occurring in his brain, which caused his seizure. There are two possible causes. Our job now is to figure out which one it is. The neurologist is going to do some tests and rule out the possibility of it being a brain tumour. If (If??? What????? IF????????) we rule that out, then we know it's epilepsy."
And that was how we spent Christmas. Praying for epilepsy.
On January 14th, Squid met his new neurologist, and we really liked her. Which is good, cause we'll be seeing more of her.
Anyway- based on an EEG and the neurological assessment, she feels reasonably confident that it’s not a tumour. They’re still doing an MRI just to make sure, but he passed his neurological exam with flying colours. That, combined with the fact that the spikes in his brain are occurring everywhere, rather than being specific to one spot (if they were all at the back of his head, say, or by his one ear), make it very unlikely that a tumour is the cause. It’s far more likely that the epilepsy is not caused by any underlying structural defect, but rather because he just has epilepsy.
I actually said "Yay! Epilepsy!" Apparently, she hears that a lot. And I then had friends say it to me, which I found EXCEEDINGLY funny when they realized what words they'd just said out loud.
The neurologist thinks what happened when he had his original seizure is that he actually had TWO separate seizures, one right after the other. The first one was something called a focal seizure, when his vision got blurry, he lost his coordination, got all confused, and walked into the wall. This triggered a completely different type of seizure- a tonic-clonic one, which is the one that caused me to call 911. The Friday just before the neurology appointment, he ‘got dizzy and my eyes got funny and I fell down at school and couldn't get up’, and she was reasonably sure that was a seizure, as well. She thinks he’s probably had a few of them during waking hours the last year or so, but because it just looks like dizziness or not paying attention or clumsiness, (all of which he has a black belt in) we hadn't noticed.
All of a sudden, a bunch of stuff is coming together and making a ton of sense- random pretty bad headaches and sleep problems over the last year, some new and interesting shitty behaviour, and problems focusing at school, which are all are being caused by these seizures. Even as she was telling me this, the kid was leaning on the exam table at 11 am, yawning and falling asleep. It’s almost impossible for him to get a really good, deep, sleep, because he’s seizing. And being sleep deprived can trigger seizures in people with epilepsy. So around and around it went, until it triggered an event that we couldn't possibly misinterpret.
They started him on anti-convulsants right away, and within a very short time, it should help with the seizures (you know- cause we didn't notice the first ones, so I'm SURE we'll notice them stopping), which will in turn help him get a full night’s sleep, which will in turn decrease the chances of him having a seizure. They’ll follow up with an MRI just to confirm that it’s not a tumour, and in 6 months we’ll see the neurologists again and have a repeat EEG to see if the medication is helping- if not, we’ll try a different medication/dosage, etc.
It seems to be helping so far. He's been on them since the 14th, and he's hopping out of bed in the mornings instead of having to be pried out of it 11 or 15 times in a row. And his headaches are gone, which is awesome. He also cries at the drop of a hat, has totally lost all impulse control, is having some anger issues, and spends 2 hours every afternoon running in circles around the neighbourhood in an attempt to stave off hyperactivity so bad that he describes it as 'like he's at a birthday party and never, ever leaves', but they tell us that these side effects should subside in a few weeks. I hope so. I've kept him home from school till he can regain a bit of control, and to be honest, it's becoming less and less enjoyable as time goes on. One of the really common side effects is exhaustion, which I thought meant we'd be sleeping in for a few weekends in a row, but alas, that was not to be.
The drug he's on is a good one- it won't make him stoned or damage his liver or cause bone loss, like a lot of them do, so we're powering through the initial shock of the side effects in an attempt to keep him on them. The other drugs are scary enough where I'm not convinced they'd be improving the situation at all. Basically, until the uncontrollable rage I keep being warned about causes him to smack Eva in the face with a shovel, TWICE, I'm sticking with it. I'm rapidly becoming an expert in all things epilepsy. My Google medical degree is in the mail as we speak.
At first we were so high on the 'not a tumor' factor that we didn't even care that there was a down side. We've gotten a huge education in the last week and a half, and the realities of the situation are starting to set in, but I refuse to forget to be grateful.
I'm grateful not only that Squiddy's head is not a ticking time bomb, but also for the seizure that alerted us to the problem now, instead of 6 years from now, when he's old enough to drive and maybe had a seizure and killed himself or someone else.
I am grateful that we have been reminded to appreciate every split second with our kids. Even the ones who are currently pissing me off. Just in case their brains explode.
I am grateful for the people with whom we surround ourselves. Who listened to me sobbing in shock on the phone and talked me off my ledge; who, rather than tell us not to be afraid, were scared with us and quietly prayed we didn't have to be; who listened to all the what-ifs and then went ahead and stayed totally optimistic in spite of them; or who insisted on Christmas manis and pedis and drinks even when it was quite literally the last thing in the world I wanted to do.
And things are looking a whole lot more wonderful than they did a month ago.