The epilepsy, that is. I suspected it, of course, which is why I stressed so much about the appointment. We always knew that it would probably return. That's the nature of the type of epilepsy Mr N has been diagnosed with. It has a very specific pattern to it. And hormones usually either triggers it or worsens it.
His EEG was clear though. Interesting. Not many doctors would want to medicate a child who has a clean EEG. And this doctor isn't one to see seizures where there is none (first-hand experience of friends of ours). So when he told us that he strongly urged us to medicate Mr N, we listened. He explained why. Bottomline is that he believes the EEG just missed any seizure activity during the 30 minutes snapshot that was taken, and that Mr N is indeed having at least absent seizures. Add to that the fact that he of course has a history of seizures and has been diagnosed with epilepsy and treated for it for many years until fairly recently, and the type of epilepsy he has been diagnosed with which is infamous for creating havoc during teenage years.
I also witnessed an absent seizure. A few months ago. It was in the car. Mr N was busy talking to me when he cut off mid-sentence. I were in standstill traffic, so I immediately glanced at him. He had a weird look on his face. Like he really was caught mid-sentence. His mouth still lifted as if he was forming a word. And he was staring straight ahead through the front windscreen, without blinking. I couldn't see his eyes, so I couldn't see if there was a tell-tale roll like he used to have when he was little. But I was pretty convinced it was a seizure. When he got out of it (a few seconds later), he seemed a bit confused, and as if he couldn't remember what he was saying or why he wanted to say it.
His one teacher also noticed what she thought must've been an absent seizure. He seemed confused and "out of it" to her. She was sure that "something" happened, and that that something was weird or abnormal. It was when she told me this (a few weeks after I witnessed the one seizure in the car) that I realised we'll need to make an appointment with a neurologist again.
But what sealed the deal for me to allow medication even with no seizure activity on the EEG, was when he asked the technician doing the EEG about what absent seizures was. And then admitted that he regularly has episodes where he suddenly wakes up from daydreaming and realises he can't remember what he was thinking about just 1 second ago. It's a blank. He thought it normal, though it has been bothering him. He said he tried to not daydream like that, but it didn't help. It only got worse with time.
Sounds convincing enough for me not to want to take chances with. Seizures can damage the brain. That's fact. I'm not playing with his brain like that. I'm a scientist. I believe in the good of medication, when given at the right time for the right reasons for the condition it is supposed to treat. It doesn't make it easy though. To come to grips with it all.
I described it to someone that it was like having this sword hanging over us for years, and now it has dropped. The shock and pain is hard to deal with. Not as hard like when he was diagnosed first at age 5. Or like when we had to wait for the brain scan to see if it was brain cancer. Still, it's hard. Very hard. He's our baby, even when he's already 15. The fear can be overwhelming. Will the meds control the seizures? Will the seizures worsen? Will he get hurt during a seizure? Will he be a victim of status or SUDEP? Will he go into true remission one day? Will he always have seizures? Will he be able to get a license and drive? Will he be ok if he lives alone one day? Will he be ok being an epileptic, now that he's a teenager and rebellious?
There's even short term worries. For example. I usually wake him up in the mornings, then leave him alone to get up and get dressed. His room is at the far side of the house. Most people with his type of epilepsy, gets the worst of their seizures when they wake up in the mornings. Would I hear him if that happens? Will he be ok? What if he gets one in the night? I won't know! Our room is too far from his. What if he gets one when he's not at home? What if he gets that first tonic-clonic? What if he gets that first one and I'm not there? What if he gets a seizure at school and the other kids notices? Not the absence ones. They're fine. Most kids won't even realize something happened. But what if he has an atonic seizure, like the ones he used to have age 5? Those would be so embarrassing!! What if his fall at school a few weeks ago wasn't "just a fall", but an atonic seizure????
Questions like those can drive a parent mad. :-( However easy it sounds for other people.... Boy has seizures, boy takes meds, boy is fine.... it is NOT easy. Not at all. The pain, the fear, the worry, the meds. It's not easy agreeing to these kinds of meds. The first time was a very, very difficult time in our life. My little boy.... he changed. He changed so much. His behaviour changed. His moods. Parts of his personality. It wasn't easy AT ALL doing that to your child. And now, agreeing to take that risk again. The side effects could be lethal. He got a rash last time, which in some people could turn deadly. So yeah. It's not easy.
But seizures damages the brain.
How do you get away from that? Not even thinking about what could happen if he has a seizure when he isn't in a safe environment. Like in a swimmingpool. Or next to stairs. Or on a balcony. Or next to a road. So many dangerous possibilities. I just can't take that risk. Rather risking the meds again. It turned out well in the end, the first time. There's hope for a good turnout this time as well.
Monday is Monkeyman's visit. My stomach clenches in a huge tight knot every time I think about it, hoping for a better outcome for our youngest little boy. Better than how his older brother's appointment went. :-( At least his weight seems to not only go down, but up and down. He still weighs less than what he did 2 months ago, and less than what he weighed a week ago. But more than what he weighed 2 weeks ago. So he picks up some weeks, other times he looses weight. It seems to me that those weeks I made more fatty foods, and also encouraged him to eat and eat and eat, he picked up. When I leave him be, let him eat until he is full, or don't if he isn't hungry, then he looses weight. :-(
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