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From country to city, From farm to fireworks…Through marriage & children, Through employment & ownership, Life continues to be an amazing journey…

Wednesday, February 1

Narcolepsy: Do You Maybe Have It?

Wow!  My son has just been diagnosed with Narcolepsy.  You never think YOUR child will be affected with a debilitating “condition”.  I’m so lucky that my son has a mild case, but this condition is so bizarre and so rare, that it confuses the most intelligent.  All of a sudden, with my morose frame of mind with this news, I feel like I owe so many an apology for my simple mindedness regarding others’ “conditions” because I considered them “normal”.  One never really grasps the real thing until it happens to you.  My brother has a child with special needs due to premature birth and epilepsy.  I always wrote his condition off to, “while common, and sad, something controllable and hey, it doesn’t happen often so he’s lucky”… “his parents are amazingly intelligent and have great coping skills…he’s also lucky that they handle it like a normal day at the office”… Guess what folks… it’s NOT a normal day at the office.  You just get “used to it” and life goes on.  So…little brother…and sister-in-law…here’s to you, for being above the rest of us as exceptional parents.  

My main reason for this post is not to ramble about coping with a special need, but hopefully to express to all of you, that special needs and “conditions” come in varied packages.  Maybe your child has a special condition, and you don’t know it.  My nephew has had “real seizures” and that clues anyone in that something’s wrong, but even epilepsy can come in small doses, and mild seizures can go completely un-noticed if you aren’t seasoned parents like by brother and his wife.  So goes the story with Narcolepsy.

My son has been for years, a sleeper.  Most babies or toddlers will fall asleep in the car…it’s a great babysitter for colic babies… Many take an unruly baby for a ride to put him to sleep.  My son was no different, but as time went by, I began to think that he was a “little old” to always fall asleep in the car.  He would come home from school and sit down and tell you about his day.  Most days are uneventful, and somewhere in the middle of his story, he would get tired, and basically take a nap.  He’s always fallen asleep during movies.  He’s a typical boy, hates grudging homework when it comes to algebra, diagramming sentences in English, etc.  He hates shopping with his mother, and would get the “zombie” look on his face when I would drag him through the mall.  But, when doing something fun, or something he really liked, would be fine.  We always wrote this all off to normal.  I was divorced, peacefully, but the “sleepiness” continued.  I thought maybe he was depressed.  I took him to counseling in case.  No help.  I thought he didn’t care about important things like school and homework…not so.  I took him in for blood work to see if he had low blood sugar, diabetes, mono…etc.  All blood work young was OK.  Hell, he’s a star athlete, playing both sides of the ball in football since Pop Warner.  He rides dirt bikes, jet-skis, loves the outdoors.  He’s a normal healthy macho guy.  But, always sleepy.  He gets old enough to drive…

The sleepiness continues.  I take him back in for a barrage of blood tests.  This time, the doctor delves more deeply.  We test for diabetes, mono, lupus, leukemia, cancer, thyroid, and depression as to lack of serotonin…on and on… all blood work OK.  My doctor randomly suggests that since chronic fatigue syndrome etc. has been ruled out… maybe a sleep disorder.  Maybe his adenoids are enlarged, he snores too much, and so forth…maybe sleep apnea.  Not so.  He goes for a sleep study and they tell me he leans toward Narcolepsy.  I always thought of that as the guy that “flops on the floor” asleep.  Not so either…that’s the extreme ones.  They get him an appointment with a Narcolepsy specialist, (which I’m lucky and live in a big city that has one) that takes two months to see.   We start him on medication to help at a low dose.  That doesn’t do much, and then the whole family gets the winter “flu”, and we need to go for antibiotics.  I have my son tell our regular doctor what he’s taking, and get her second opinion, and tell her that it’s not doing much.  She agrees that it’s good to take the drug, but maybe we should double it until we see the specialist.  We double it, and wait for the appointment.  The drug Provigil does cause some agitation, and anxiety, like too much coffee… but he goes on.  

We finally saw the specialist yesterday, and find out it’s all true.  We even discovered another condition that comes with Narcolepsy, and that’s Cataplexy.  Believe it or not, one can lose temporary muscle tone or motor function with emotion.  Laughter, (yes funny laughter) is the most common emotion that causes it.  Being a sleep specialist, the doctor asked about it.  My son thought it happened to everybody because it had always happened to him, so he never mentioned it…but when laughing hysterically, his knees will buckle, and he might grab a wall, or put his hands on his knees, and overcome the instant and write it off to just a weird thing.  Now we find out it’s real.  Some with Narcolepsy with Cataplexy buckle on other emotions, like the slamming of a door, where you and I would just jump, they buckle.  So this doctor again doubles the dose…now we are taking serious medicine.

Like I said, so far, my son is fortunate to have a mild case.  But, it can manifest and get worse, or never change.  My main reason to ramble is that you may have a child, or you may be a person with these random simple symptoms, and not know you have a treatable condition.  Narcolepsy is a life long thing, no cure, and will never go away.  You will never be able to drive long distances, you will never be able to fly a plane, and employment will be a problem, as getting caught “napping” in the break room doesn’t lead to promotions.  You won’t be eligible for military service, or be able to consistently engage in any dangerous activity.  But, it’s treatable, and with change of lifestyle can be livable.  Please, if you have a loved one that you think tends to be lazy, or just sleeps too much…consider being tested.  It’s been hard for my son to realize that he has “something” that most don’t understand and something that will compromise everything he does as an adult.  It can be dangerous, and I live with the knowledge that any day, I could lose my son to an accident due to falling asleep.  His case is so mild at this time that with awareness, he just doesn’t drive except when he’s feeling fine, and never much beyond our local neighborhood or city.  But damn, sucks to know you can never travel to a cool place on your own.

I’m a “newbie” at this, and I will post more as time goes on.  Thanks for listening, and I hope someone out there realizes that, “Hey…I’m not crazy, I’m not lazy…I have a real “condition”.