My baby boy
Meet Dylan. He’s insanely cute, scary smart, hilarious, a lover of all things Star Wars and severely narcoleptic with a side of cataplexy. To keep things interesting, he is also allergic to peanuts and tree nuts. Sadly, the true pleasure that is a Reese Peanut Buttercup and a restful night’s sleep, will forever allude him.
This kid likes to sleep…
In May of 2014, about a month before his third birthday, Dylan started falling asleep every morning on the way to school. How cute is that, righ? Naturally, I took pictures and video and posted them to Insta. Then Dylan started falling asleep throughout the day, often in very funny positions. More adorable photo ops and Facebook posts followed. He started sleeping more and more. He slept a lot that summer. Like a lot, a lot.
Dr. Mommy M.D.
Then his mood changed. Drastically. Our happy laid back little dude became irritable, moody and very easily frustrated. He was even aggressive at times (a scar on my right cheek serves as a lasing memory of his UFC fighting days). Smiles and laughter were increasingly rare. Something was wrong. But what?
We took Dylan to his paediatrician in June 2014 and this marked the start of Dylan’s ongoing hate affair with doctors, hospitals, surgeries, medical tests and medication. I quickly earned myself an M.D. with a specialty in sleep medicine from the University of the Interweb. While I would concede that my degree came from a less prestigious university than most of Dylan’s doctors, I would respectfully suggest that I was better versed, more knowledgeable and more up-to-date on current sleep research than the majority of them. I also diagnosed Dylan with narcolepsy & cataplexy long before any medical professional would.
Dylan’s initial diagnosis was low iron. Doctors and friends assured us that Dylan would be fine once his iron levels were up. But he wasn’t. Then he was diagnosed with sleep apnea due to enlarged tonsils and adenoids. This sounded hopeful as it could be a relatively simple fix with a minor operation. But it wasn’t. Months after the tonsillectomy, Dylan was still abnormally sleepy and moody. Finally, after a battery of tests, countless doctor appointments and lots of research, Dylan was officially diagnosed with narcolepsy and cataplexy. It was a tragic victory.
The summer of 2014 to the summer of 2015 (aka “the Year from Hell”), my three-year-old boy had blood drawn five times (this is where we learned what his lungs are capable of), surgery to remove his tonsils and adenoids (Worst. Day. Ever.), an MRI (for which he had to be put to sleep), an ECG, a genetic test, three nighttime sleep studies, an MSLT (daytime sleep study) and five stitches (completely unrelated to the narcolepsy but included nonetheless). He saw four sleep doctors, two ENTs, a pediatric neurologist and a child psychiatrist. It was during this time that I learned three things:
- There is a minimum three month wait period to see any specialist in the Greater Toronto Area;
- I have zero patience waiting for my children to receive medical attention; and
- Calling a doctor’s office every day and crying helps tremendously to expedite the appointment setting process.
Drugs, drugs, drugs, which are good? Which are bad? Ask your mom or ask your dad.
During the Year from Hell, Dylan was put on an aggressive course of iron therapy, three times per day for six weeks (iron’s overwhelmingly bitter flavour tastes delicious to the sophisticated palette of a three-year-old), had to take morphine and acetaminophen (up the wazoo since he refused to swallow anything) after his surgery, and then started taste testing various medications to treat the symptoms of narcolepsy and cataplexy including massive doses of Tryptophan, Modafinil, Ritalin, Biphentin, Effexor and Prozac. Dylan continues to experiment with non-recreational drugs to find the right combination to control his symptoms. We are desperately hoping not to have to start him on Xyrem – a scary and very expensive last resort narcolepsy drug not approved for use in children that is eerily similar to the date rape drug GHB. Currently, he is on Biphentin and has just weaned off of Effexor to start Prozac. Come on Prozac!
Sleep is the easy part. It’s when he’s awake that it’s hard.
Dylan isn’t Dylan anymore. He’s Dylan with Narcolepsy (“DWN”) now. Dylan was sweet, happy, good-natured, friendly and always smiling. DWN is grumpy, mean, irrational and exhausted. Dylan loved his big sister more than anything in the world. He missed her when she was at a friend’s house, he constantly wanted to play with her and he always told her he loved her. DWN is frustrated by Rylie’s mere presence in a room. Dylan was a Mama’s boy, very attached to his Mama Bear. DWN wants only for Papa Bear. Parenting Dylan is a breeze.
Dylan Before Narcolepsy
Happily singing the ABCs
Hanging out with Auntie Jodi
Singing Happy Birthday to his big sis Rylie
I won’t post videos of DWN because the drastic change in his personality is heartbreaking. Happiness is fleeting because the majority of his day is spent warding off sleep. Dylan leads a pretty normal life for the most part. He goes to school and camp, he has play dates, he loves the iPad and video games, he goes to after-school programs, he’s learning to read but life is hard for him. The very act of staying awake is a constant struggle and impacts every other aspect of his life. He’s often too tired to go anywhere or do anything and prefers to stay at home. Going out for dinner or to the movies as a family requires taking two cars, in case Dylan needs to go home. Getting through a day of school is impossible without a nap or two. Meltdowns are frequent and always imminent. This is our new normal.
It will get better. It has to get better. Right?
Despite hearing bad news at almost every turn, despite his worsening condition (which now seems to have plateaued thankfully) and despite not responding well to any medications thus far, we are still hopeful that Dylan will return. Research seems to be getting closer to a cure every day and most promisingly, Rylie has announced she wants to become a doctor so she can find a cure for narcolepsy. Rylie can accomplish anything if she puts her mind to it.
7 thoughts on “Dylan’s Story”
Just recently, I was considering who would possess the passion and motivation to pursue a cure for narcolepsy, who would also be wakeful enough to do so!
Sure! There are medical researchers that may find this particular area of sleep medicine interesting, but I am inclined to believe it might take someone who understands how it truly impacts the lives of people with it & how it impacts those who live with it, to push the research over the line to become a cure!
Your mum’s description of your future aspirations gives a very clear answer to my ponderings! And, as a PWN, that answer gives me hope! Thank you! And good luck!
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Thank you Amy! I will show Rylie your kind comment and I’m sure it will make her all that more determined.
Hi Lanna. Thank you for sharing your personal story and I very much hope Rylie persues her future medical career. I’ve had narcolepsy with a mild case of cataplexy for 4 years and have a 2 yo daughter. My greatest fear is she will develop narcolepsy. It must be unbearable feeling unable to help/fix your Darcy. Leading research in the area of narcolepsy is a Dr Emmanuel Mignot of Standford University. He seems to really understand the condition and having seen him in person, he genuinely cares about sufferers. Working within his team is Mali Einen who has suffered Narcolepsy for 13 yrs. His current research deals with developing easier testing to diagnose narcolepsy including genetic testing. I wish you the very best in finding effective treatment for Darcy and I hope you find this post useful.
Thanks Sarah! Dylan actually had the genetic test and unsurprisingly tested positive. Wish you lots of luck with your little one.
I read this everytime I am having a bad day with my 4 year old daughter who has narcolepsy with cataplexy, it reminds me I am or alone! Thank you.
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Thanks for your kind words Shelley. It’s definitely important to remember we are not alone.