I wake up every morning ready for battle. The battle is with Dylan, my four year old narcoleptic son, who refuses to take his meds. He is a worthy opponent. His army is strong, equipped with heavy artillery. His weapon of choice is an ear piercing “NO!” and a strategically timed boneless maneuver. Both work surprisingly well at delaying my inevitable victory. The gruesome battle comes to an end when he either surrenders to my threats of electronic prohibition or is captured and tortured. Though always the victor, I rarely take pride in my win. With posthaste my attention turns to the casualties of war – too many precious morning minutes are MIA, tardiness now reigns supreme, emotional wounds dehisce, the imaginary fiction that is scream free parenting is bloodied and battered and all hope for a smooth start to the day is dead.
War, what is it good for?
In a perfect world where eating sushi makes you smarter and the Olympics recognizes the athleticism of klutziness, Dylan should be taking five medications:
- A stimulant to help keep him awake
- An antidepressant to suppress his cataplexy
- Iron for his anemia
- A multi-vitamin with DHA and omega to supplement his poor diet
- A probiotic to help manage the severe constipation his other meds cause
In the real world, where Two and a Half Men gets better ratings than Arrested Development, I have to pick my battles. The stimulant and the antidepressant are nonnegotiable but the rest, admittedly, are debatable.
The Nonnegotiables
His current stimulant of choice is Biphentin. It comes in capsule form which we open and mix with apple sauce. He always gags after swallowing the spoonful of medicine. We have offered to give him chocolate sauce, pudding, jello, yogurt, vodka and cocaine in place of the apple sauce but the medium is clearly not the message in this case. Force feeding the apple sauce is challenging because it requires the precision of a sniper to administer successfully. As a defense mechanism, Dylan turns into the wacky waving inflatable arm flailing tube man scattering the apple sauce and/or beads of medicine everywhere. Fun times. Up until recently, his antidepressant of choice was Effexor which also came in capsule form that we mixed with the Biphentin and apple sauce. Two birds, one stone. But recently he has switched to Prozac which comes in a liquid form requiring administration via syringe, further complicating my morning battle mission. Its taste is inoffensive yet Dylan stays true to his principle of refusing all medication.
The Debatables
The iron is an awful bitter tasting liquid that is so pungent it cannot be hidden in food or drink. We have tried flavouring it and adding sweetener but the strong iron taste is always detectable. The multi-vitamin is a tasty gummy that also makes Dylan gag. I’ve tried hiding the vitamin in a packet of regular gummies but like a food taster sniffing out poison, Dylan always identifies the noxious gummy with rancor. The probiotic is either a powder that we can sometimes sneak into his milk or a sour pill that he occasionally tolerates.
In a few years, Dylan may have to start a third nonnegotiable medication called Xyrem. Xyrem is administered twice nightly – once at bedtime and then again three to four hours later. Xyrem is known for two things: 1) its similarity to GHB, the date rape drug, and 2) its overpowering salty taste that can linger throughout the day and often causes vomiting. For now, our civil war rages on and our soldiers are training for the possibility of future nightly battles.
My favourite version of War
#WakeUpDylan 
Nicely done Lanna. Easy to read and even though it’s a heavy subject it’s also entertaining in a way. (Y)
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Thanks so much Feri! I really appreciate the kind words.
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Hi! As both a parent of a strong-willed 3 year old and a narcoleptic myself, the first thing that comes to mind for me is could you consider NOT giving him the meds for a day or two? Being so young, does he remember/understand what a day without the meds feels like? If he is too sleepy to do the things he likes to do when he has energy, maybe you can explain that the medicine helps give him the energy for those things. It may solve the battle for you or it may just create a moody, sleepy, grumpy toddler, but it doesn’t sound like you have much to lose.
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Thanks Liz. I never thought of that. I’ll definitely give it a try. Like you said, I really have nothing to lose.
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Lanna,
As in any war you have to pick your battles. Although you may lose some battles, this is a war worth waging! You are doing an excellent job of digging the trenches and preparing for the long war ahead.
I think this blog is a great idea for you to help raise awareness and to document all the small battles to show your son one day. Keep up the good job.
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Thank you Joseph!
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Woke up this morning to find this on my newsfeed..amazing..my 23yr old son, Dylan, has been fighting this monster for 12 years..pediatrician dismissed my concerns..cataplexy was ah ha to N with C diagnosis..so many med changes as he grew and got older..I have pages of notes and often thought of writing a book..he now takes Nuvigil and Venlafaxine and tries to maintain a schedule..he played football for 6 years and graduate from WVU last spring..there is hope and you are helping your son and many others by blogging and shining your light on the complexity and frustrations of this brain disorder..thank you
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Thanks so much Cindy. Our Dylans are strong and can battle through anything.
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Great Blog Lanna. Easy to read and very true to heart. Thank you for sharing with us, your daily battles with you son Dylan. It must be saddening for you to watch your son go through this on a daily basis. Knowing that these meds are meant to help him, but he refuses them so diligently, it must break your heart at times. It sounds like you are doing the absolute best you can do for Dylan.
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Thanks so much Danielle!
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Very well written, I liked a lot. I think Xyrem might not be that bad, my extremely picky child has never complained about the taste. Only discribed as a bit salty. Lost of appetite ids a concern though. But fot those who tolerate it I think it’s very good.
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Thanks Maarit. That’s great that your son doesn’t mind the taste! My fingers are crossed that Dylan won’t mind the taste either.
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If you do move to Xyrem try using very cold water. The colder it is the less you tast the salt. I can only imagine the struggles you face daily but sometimes a little humor goes a long way when dealing with stress like this. I would love to read more of blog as you continue to write 🙂
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Thanks for the tip Ashley! Thanks for your support.
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I know your battle all to well. I have a 13 yr old son with ADHD, anxiety and epilepsy. He is supposed to take Culturell, Zyrtec, and Keppra. We were switching him off Keppra and putting him on Lamictal. He quit taking his Culturell, then his Zyrtec. He wouldn’t continue his Keppra while getting him use to the Lamictal. So after fighting him 45 mins every night, and throwing myself into a cataplexy episode, he quit the Keppra. He continued the Lamictal for 2 weeks, then said he doesn’t need that as well. 😦 I can’t sit on a 13yr old and shove the medicine down his throat. Luckily he has only had 2 seizures. Hope they don’t continue… This school year looks like it’s going to be fun 😦 I hope you have better luck.
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I’m so sorry to hear about the your struggles you’re going through with your boy. No one said parenting is easy, right?
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Lanna, you are hilarious! As a fellow writer, blogger, and skeptic of Two and a Half Men, I loved reading this. More importantly, as a soldier-child with narcolepsy, I appreciate reading the parent’s side of narcoleptic mornings. We didn’t know it was N, but knowing wouldn’t have mattered; my mom faced a beating by my legs, moans, and devil horns every single morning. It’s easy to forget that she faced my undiagnosed N with me every day, so thank you for reminding me to appreciate her patience!
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Seriously though, Two and a Half Men over Areested Drvelopment?!? Thanks for comment Anna!
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I’ve been taking Xyrem for a year now and for me it is life changing. It isn’t perfect, I also take Provigil to give me energy during the day, but Xyrem has decreased my cataplexy to be almost nonexistent, decreased my sleepiness exponentially, and given me a better memory and attention span. Swallow all of medicine. Breathe in through your nose and our through your mouth. Take a swig of juice to flush out the salty. The breathing technique cuts out much of the bitterness and gives you a moment to take a drink before you fully hand
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Great tips. Thanks Carmen!
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*have to taste what you just drank. I find the saltiness quite disgusting and I can taste the bitterness of the medicine under the salt, however I use this method each night when I take it and it is much less horrible to do. I hope this is helpful to you if your son ends up using Xyrem and I hope his quality of life is improved as much as mine!
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Lanna
I am in my 30’s dealing with Narcolepsy and Cataplexy and know those mornings really well. my son had a lot of tardies last year because I could not get up with my alarm. I had my medicine changed and I set my alarm an hour earlier so I can get up and take my medicine and go back to sleep for another hour. My N can be so bad that I fall alsleep at my deck. I was on Addrell and Prozac for a while but was not working so now I take 2- Nuvigil a day and Effexor. I know how hard it is hard for me to deal with N&C & some weekends I will not take my medicine just so I can feel a little normal but I sleep on and off the entire weekend.
It breaks my heart to hear when young kids have to deal with N&C they don’t get to have a normal child hood.
I will keep an eye out for your blogs.
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