My 19 yr old son was diagnosed with narcolepsy with cataplexy a few months ago. He is now taking Nuvigil & prozac. My problem is I am not sure what is the disease and what is just a lazy teenager? He is in college, and while he didn't get the grades we were hoping for, he is able to stay alert and is learning. Which is a great improvement from his high school career. I am sure he suffered with narcolepsy years before the dx. He barely made it through HS. My problem is I dont know how to inspire him to overcome this dx. I am afraid that he sits back and sleeps his life away. Any help or insight from other parents would be appreciated. You know how you just want everything to be perfect for your kids & it sucks when you dont know how to make that happen!
Hello,
My name is Rebecca, I have Narcolepsy and we soooooo need to talk! There is so, so much I can and want to talk to you about regarding this disorder, both from a parent's perspective and from someone who lives with this disorder everyday. I know what you, as a concerned mom, are going through. Your fears for your son are valid. But hope is not lost. He can have a successful, happy and fulfilling life. It can be done. But he's going to need help, support and understanding from family and friends.
Your first line of defense is education. For you, for your son, for your family. Learn everything you can about this disorder. Then become very familiar with the Americans with Disabilities Act and how this will help and safeguard him in school and later at work. You might need to advocate for your son, still, so the more you know, the better off your son will be. Encourage him to join support groups, whether in person or online here, like you have done. Talking with his peers who are going through the same thing as he is, will help him greatly. I encourage you to continue reaching out to parents, as well. Having another person to talk with, who completely understands and has experienced what you're going through, might just keep you out of a straight jacket and padded room.
My symptoms began early in high school. I remember as a teenager, my mother coming into my room telling me if I would just get up and move around a bit, get the circulation perkolating, I would feel better. Maybe take a walk, ride my bike...Growing up, I was seen as lazy, indifferent, unmotivated. I was told I was too emotional, overly dramatic and, at times, out of control. Was I really though? Could be. At certain times of the month, absolutely! More than likely, though, I was suffering from the effects of chronic sleep deprivation. I knew something was wrong but no one else seemed to. My parents had never heard of Narcolepsy or it's symptoms. Sleep studies were not common then, so nothing was ever said to my pediatrician. I finished high school, attempted college (later went back and finished, so put the panic button away, Mom), married and had 3 children. My youngest was 2 years old when I was finally diagnosed with Narcolepsy without Cataplexy. Twenty years after my first symptoms began.
Luckily for our children, though, sleep centers are everywhere now and doctors are more educated on these disorders and how to treat them. Me, though? I naively thought, now that we know what's wrong, I'd be given some meds and be sent on my merry way to live happily ever after. And wide awake, too, for once. Not the case. It took several trials with several different meds before we found the best one at the right dose. This phase for your son might not last as long as mine since the docs are more educated on this and there are more drug options available. Finding the right medication\s and tweaking it to get the right dose, can take some time. The wait can be aggravatingly slow.
Now 13, Meaghan has been suffering from Sleep Apnea and Idiopathic Hypersomnia since she was 8 years old (Hypersomnia is the same overwhelming exhaustion that Narcoleptics suffer from but without actually having Narcolepsy. Idiopathic is a term that basically means,well, the docs have no idea where the origin of this disorder stems from). Despite 10-12 hours of sleep at night, she was falling asleep in class, sleeping instead of eating lunch or playing at recess time. School has been a constant, never-ending struggle for her but she's been hanging on. As she learns how to live with and work around this disorder, her grades have been improving every year. She has gone through many sleep studies and has only been on a few medications as there aren't many drug options for children. The sleep apnea resolved itself but the hypersomnia rages on. She goes for yet another sleep study next week to see if she has Narcolepsy now.
It's easy to become lost and consumed by the constant worry of how this is going to affect her. How can she go to college if she can't stay awake long enough to finish 3rd period Math? How is she going to be able to cope with the embarrassment she'll face when she wakes up with her head in a plate of cafeteria grade spaghetti? Should I prepare her now for the possibility that she might not be able to drive (check your state's laws regarding this)? And if she does drive, what happens if a sleep attack hits? Can she ever have a career, get married, have children...? The list of questions, scenarios, and what-ifs are endless. Don't torture yourself with this level of worry because it's destructive and solves nothing. Arm yourself and your son with education, learn from setbacks and celebrate every success, no matter how small. Meaghan can face all this and much, much more because I am empowering her to do so. You can do the same for your son.
I feel your pain, Overprotective Mom! My son was dx one year into college at 20. Just one week after he started the commute to college driving rather than taking the long bus ride. I live with the guilt of teasing him all these years not knowing he had Narcolepsy. We found out after he fell asleep coming to a stop and basically rolled the car under an SUV. The last year has been very difficult. It is hard to get him trained to try to stay on schedule. That is the most important thing, from what the doc says. There are so many things that can interrupt it. Furthermore, we found out that him practicing his music for too long will likewise exhaust him and come mid afternoon, his meds can't compete. The doc said anything that we do to make us tired, will affect him X 10. So, he has to break it up so not to take too much out of him all at once. Finally seeking out help at college and elsewhere - but it has been a really long process of not knowing what to expect, limitations, and getting him to focus on doing things to help get back on track. Since there are varying levels of the disorder, it seems you are just stuck messing around til you find the sweet spot between your schedule and meds in order just to get life back to what the rest of us think is normal. I am hoping this semester is far more successful than how things went last year and he is able to successfully get help and motivated to move on. Wish I had words of advice - but I am in the same boat. Scared for him all the time, frustrated at and for him all the time...hoping he gets it together and is able to pursue his future...worrying is wasteful, but so hard to control when that is your personality :(
Hang in there!
This thread was so helpful to me! Thank you to all those parents that opened up. My son has an addication to TV and internet reading, up to 16 hours a day. Does this behavior sound familiar to anyone? If so, what have you all done to help combat this? thank you in advance for your suggestions
Yes, sounds too familiar to me. My son’s addiction is on-line gaming, Magic and he also reads alot on reddit. He is very intelligent and absorbs information very easily. Its amazing the things he remembers and equally amazing the things he forgets. I haven’t addressed the gaming much - since he has been stuck here so much for so long. I finally got him to stop going to Magic tournaments where he was up all night, screwing his schedule up for the rest of the week. We are finally getting him back to college and getting his schedule straight again. He took initiative to go into the disabilities office at school to inquire about help with his schedule and whatever else they could offer, and they were great! So, this semester, he is just getting back into the rhythm of the waking, the commute, and getting back home before his meds start wearing off. He has been working with the high school orchestra on a play, so he has been relatively busy and not gaming as much. I think now is a good time while he is motivated, to start getting him to do more to help me. I finally broke down and got him a new phone - and he sets reminders on it for stuff that he needs to do. So I think he is finally starting to mature a little and take initiative. It just takes a while for them to wrap their minds around these new limitations and not being able to do what everyone else is doing. (like staying up all night partying or drinking) For my son, it seems often in passive moments where his mind is not occupied, that is the time it is easiest for him to pass out. So - the gaming keeps him occupied, I guess. I’m glad he doesn’t choose to do nothing but sleep! I did tell him in the fall last year - that I couldn’t just have him sitting here all day doing nothing but playing. So, we talked to his old HS band teacher, and he let him come over and volunteer with the kids. That helped him so much. Gave him purpose to get up and get going in the morning, and he felt so rewarded tutoring them and sharing what he has learned. So, maybe something like that would help your son? It really helped his self-esteem and got him wanting to back to school to pursue a career. Its all hard and scary - but we are tackling it one day at a time, one situation at a time.