First off, please forgive me for the blog title. I’m always horrible with naming my posts and my brain has just given up on trying to be creative. So, whatever.
A lot has happened since I wrote last about Jake’s seizure. I don’t love giving half information and since my brain has been too wiped out to give me words, I decided to just wait until the words came back. And, hey! Here they are.
If you haven’t read the last two blog posts, Jake had a seizure on October 29th. He passed out, couldn’t speak, and it was terrible. An ER visit, regular doctor visit and a few weeks later, we met with our new pediatric neurologist and she said that she suspects he has epilepsy and I was tasked with tracking any additional seizures and getting Jake ready for an MRI and an EEG.
The only way to really confirm an “absent seizure” is to catch Jake when he is having one and wave my hand in his eyes. If he doesn’t respond, his brain has misfired and he’s checked out entirely. We have caught 10 of those in the last month. Out of the blue last week, Jake told me he doesn’t like it when “his brain goes to sleep”. Since I have had zero ideas for how to explain what is going on other than explaining that he isn’t feeling well and we are trying to figure out why, I knew that description didn’t come from me. I asked around and nobody else has used that terminology with him. I asked him what it feels like when his brain goes to sleep and he said it feels like it’s raining inside his head, which he doesn’t like. Suddenly, all the behavior problems he has been having are starting to make sense. I would act like a jerk if my brain was raining, too!
The usual trajectory of his seizures are the onset of a headache, then one to two of those spaced out moments, then the headache goes away, and then things get fun. His behavior has been truly dreadful. I’ve discovered this is common during the “recovery period” of a seizure, but I have absolutely no idea what to do. We still can’t tolerate screaming, whining, hitting, and other stunts like that, and it doesn’t really help that I understand why it’s happening. He gets really irrational, so trying to reason with him is also totally out the window. It reminds me of my horseback riding days when I could feel my horse was about to buck and saying, “No. No. You don’t need to do this” and sitting down hard and pulling in the reins and then realizing that I was just going to need to hang on tight and ride it out.
So, yeah. Life has been strange. Stranger than normal. Which is pretty freaking strange on a good day!
In a stroke of luck/miracle (I’m going with miracle), the MRI that had been scheduled for December 30th got bumped up to November 26th. This was the only time that being on a waiting list actually paid off.
An MRI (for those lucky jerks out there who haven’t had medical problems) is basically an x-ray of your brain. It shows tumors, bleeds, lesions, and generally stuff being where it isn’t supposed to be. This is the “tubey thing” test and requires the patient to be totally still in a tiny tube while being bombarded what sounds like a submarine engine. In case you haven’t met a five year old ever, holding really still for an hour is about as likely as being struck by lightning. So, Jake had to go under general anesthesia, the thought of which made me say bad things inside my head. And, on the outside of my head a few times. I tend to do spectacularly bad (i.e. projectile vomiting and waking up many hours later) with anesthesia and wasn’t anxious to find out if Jake does badly as well.
Since it was Jake go under or not get the test done at all, I couldn’t really chicken out of that, so in we went for the anesthetized MRI.
This is us the night before the MRI. I’m doing my best not to worry and we are reading a book about doctors. Jake’s has fallen in love with my surgeon and is now on the path to becoming a “doctor/teacher/fireman that rides in the truck with the lights”.
This is Jake all gowned up and charming the socks off of everyone in sight.
We got him as ready as we could, the nurse put numbing gel on the backs of his hands, we got to play with him and cuddle and then it was time to go. Once we put him on the stiff board with the head restraints, he started to get very upset, but it wasn’t long before the IV was in and he was out. In about five seconds, they had him wheeled into the room (which we discovered today that he remembers) and the door shut in my face. For every single thing that little boy has been through, I have been with him and the sight of a “Do Not Enter” sign on a door between me and Jake made me lose it for a second.
It was over fairly quickly and we got to go see him. I am continually impressed with our medical practice. The nurse knew all I wanted to do was get my hands on him, but she told me pretty firmly that I needed to not touch him or talk to him until she gave me permission but that she wanted me to get as close as I could so that when he started to stir, I would be right there.
My sweet boy.
Before too long, he was awake and munching on goldfish crackers. He really wanted to get up and walk all by himself to the bathroom and I have to confess that I was laughing as I helped my intoxicated five year old walk a straight line to the bathroom.
He did great waking up and since the medication they used to knock him out is what they use to make people not projectile vomit, he had no complications. In fact, he was bouncing off the walls for the rest of the day and had no interest in “resting quietly” which the doctor assured us would happen.
In just a few hours, I got a call from the nurse at Jacob’s doctor’s office saying that his test was totally normal. My face, body, and heart breathed a massive sigh of relief and I think I actually got to sleep a normal sleep which hadn’t happened since that first big seizure.
This is one of the pictures we got to take home with us. Not many five year olds get to take their brain to school for show and tell!
And, no, the answer to Jake’s problems is NOT that he has a truck in his head. 🙂
We had a pretty great Thanksgiving after that news!
A few days later and we were off to the races again with the EEG. I’m too lazy to look up what EEG stands for, but the test sort of listens to the brain talk to itself and maps out any irregularities, any strange brain activity, or misfirings that could be causing the seizures.
To get a brain to misfire on command, it has to be stressed out. Stressing out a five year old brain means letting it only sleep for 4-5 hours the night before. Which means also stressing out the parents of the brain the night before. I have a raging cold so Greg was on first watch, while I tried to argue myself to sleep. That didn’t work out very well and when I got up at 3:45 in the morning to get Jake up, my body informed me in the strongest words possible that I am not a teenager anymore.
Greg said that he has never seen anyone have so much fun being sleep deprived. He was absolutely right. Jake did great the whole time. Maybe he does have what it takes to become a doctor! This picture was taken at 3:55 in the morning.
Jake was a pro for the EEG as well. We got him on the bed, about 30 electrodes mapped out and placed on his head, and then we got started. The tech had him blow into a pinwheel for three minutes to hyperventilate, then flashed lights into his eyes and then we tried to go to sleep. The brain behaves differently during all of these stressed out scenarios and the hope is to catch a misfire. The tech wasn’t supposed to tell us if she found anything, but when I told her that I was actually hoping that we would find something, she told me that she marked a few spots and that we would have some things to talk to the doctor about.
We don’t go back to see her until the 19th and at that point, we will find out results, discuss what we have been seeing with his seizures, and figure out what is next.
I’m hopeful that since there are no tumors, or trucks, in Jake’s brain that the solution could be lengthy but not terrible. I mostly want answers for why Jake seems to disappear sometimes, why school has been so awful for him, and for a way to get his brain to stop “raining” and falling asleep.
We are definitely “living in interesting times”. I’d like to try boring times soon.
Let’s face it, though, life with Jake will never be boring. 🙂