My next post was supposed to be about Derek’s Results of his EEG and Mental Functioning Assessment. Instead, it’s about my son.
“All he does is sleep all day!”
You hear this a lot about teenagers and how they sleep all day, and don’t do anything.
According to my daughter, my son doesn’t get out of bed, he is always sleeping, he is lazy. He must stay up all night because he is always tired.
We have heard it all, from both friends and teachers. At 14 he was diagnosed with ADHD. He was put on ritalin and it helped. But he still spent a lot of day time sleeping, including in the middle of a dance exam.
He also didn’t often join in the fun we had at home. Several years ago we kept getting a grumpy “stop it I can’t move” when we were having lots of fun and he had joined in and started laughing.
We heard it so often over the years and it was said so often with annoyance verging on anger, that we began to ignore it.
That was until one day recently when Derek and I had a game of cards with him. He was winning, and he was laughing. He had an “attack”. His head dropped, his arms dropped, and he “stopped” everything.
30 seconds later he was back to normal. We had taken all this for granted because it happened so often. We knew that all we had to do was ignore it, stay quiet, and let things calm down.
It happened twice during the game but this time something different happened. At the end of the game Bevan go up and went inside. He wasn’t upset, he was determined!
10 minutes later he came out while Derek and I were playing another game of cards. He stood at the door to the deck and announced “I have narcolepsy and cataplexy!”.
It wasn’t an “I think I might have”, it was a definite I HAVE it!
I got the laptop out and started investigating. Sure enough, everything we had observed over the years fitted. Extreme daytime sleepiness, to the point of falling asleep in the middle of dance classes was the biggest sign.
His attacks of cataplexy were clear. We had seen it many times over the years but we put it down to Bevan being Bevan. Now we knew what was wrong it put a completely different spin on things.
Bevan had to go for an annual appointment with the Dr. I was running late so Bevan went in before I arrived. The Dr confirmed he was their for his annual look over for Ritalin The Dr then asked (routinely) if that was all. Bevan said NO! I have narcolepsy and cataplexy.
I arrived just as he announced this. The Dr listened intently, talked to us, did a questioniare and then said, “Bevan, I agree, you have narcolepsy with cataplexy. You need to have a proper diagnosis.”
So Bevan went to a sleep clinic. It meant sleeping over for the night, then during the day the next day, he had to have 4 Sleep Latency Tests. What this means is that, while attached to wires, four times they would turn the lights out, make the room quiet, and see how long it took him to fall asleep. Each test was to last 20 minutes. Then (because of the electrodes) they checked how long it took from going to sleep, to entering REM sleep.
To have Narcolepsy, you MUST have a Mean Sleep Latency of <8 minutes, (you have to go to sleep within 8 minutes of being told to) with a minimum 2 periods (over the 4 sleeps) of REM sleep.
When I picked Bevan up I asked him how long it took to got to sleep. He said that he didn’t go to sleep for the first 2 tests, but went to sleep after about 5-10 minutes for the next 2.
We got the results back last week.
He had a Mean Sleep Latency (MSL) of 1.4 minutes with a Mean REM Latency (MRL) of 2.5 minutes.
Broken down, this means, in minutes:
MSL is how long it takes to go to sleep, and MRL is how long before you start dreaming.
Sleep 1 MSL – 1.4 MRL – 1.0
Sleep 2 MSL – 2.0 MRL – 2.5
Sleep 3 MSL – 1.0 MRL – 4.0
Sleep 4 MSL – 1.0 MRL – 2.5
They also discovered a condition called Severe Periodic Leg Movement. This means his legs move during over 35% of his sleep at night. This alone causes you to be sleep deprived, even when you sleep.
The diagnosis from this 24 hour study is: “Severe periodic limb movement with narcolepsy cataplexy syndrome”.
Looking at his results, he is text book. So now we have more “hidden chronic illnesses” in the house.
This is a new diagnosis, but not a new condition for him.
It explains why, when he comes home and falls asleep mid afternoon, when he would fall asleep in class, or get up and walk out because he needed fresh air, or seemed bored, and kept fidgeting in class. It was to stay away. School can be boring in many subjects, especially English, so yes, he would fall asleep or appear disruptive trying everything to stay awake so he didn’t get into trouble. Eventually he worked out that just getting up and walking out of class and finding a corner to sit on the floor and go to sleep in, was the answer.
We were constantly told he needed to go to bed earlier. The night he had the sleep test he had 10 hours sleep according to the monitoring. It didn’t stop it!
Parents that read this take note. If you have a teenager that seems to sleep more than normal especially if they have what appears to be a full nights sleep, don’t write them off as lazy, get it checked out. They could have a hidden sleep disorder.