I’m learning something new again about health issues for children and not by choice. My daughter Sammi has been diagnosed with Narcolepsy. In a way I’m happy to have one answer to the troubles she’s been enduring. In other, I’m scared beyond belief.
Diagnosis of Narcolepsy In Children
After Sammi’s first sleep study, we were told that she was sleep deprived, but that there were no concrete answers found from the study. So she was scheduled for another sleep study and a nap study also known as a Multiple Sleep Latency Test (MSLT). Between the pediatrician, the pediatric cardiologist, the two visits to the ER for Sinus Tachycardia events and the sleep study, she’s been shown to be physically fit and her blood work is normal.
The nap study, however showed that Sammi fell asleep during 4 of the 5 scheduled naps. The most important factor is that she fell asleep within 5 minutes of each nap. This is one of the reasons she was diagnosed with Narcolepsy. The other reasons for the diagnosis is extreme daytime sleepiness, inability to “catch up on sleep”, difficulty concentrating, sluggishness and trouble with grades (even though she is capable).
Treatment of Narcolepsy
We are keeping Sammi on a strict bedtime schedule, even on the weekends. We’ve also stopped allowing her to watch TV in her bedroom. If we find that she puts the TV on, it will be removed. So far, within 3 days of doing this, she has fallen asleep in 45 minutes instead of hours.
Although Sammi doesn’t drink caffeinated drinks, we are watching her diet for anything that may include caffeine, such as chocolate. We are removing all of it at from the late afternoon and on. This was asked of us when she was diagnosed with Sinus Tachycardia, but we became more aware of chocolate and chocolate pudding now.
Sammi will begin a prescription medication to help her stay more awake during the daytime. We will monitor her for 5 days to see how she tolerates it. Then I will call the sleep doctor to be sure she should continue it.
The sleep doctor is now another doctor that will treat Sammi. We see her again in 6 weeks.
School Issues
My husband and I are not going to allow Sammi to use the diagnosis of Narcolepsy as an excuse to do poorly in school. We do agree though that she needs extra assistance to do her best in her classes. We plan on meeting with the school to talk about an IEP (Indivulized Education Plan). The sleep doctor is going to be an advocate for us.
Do you or anyone you know have Narcolepsy? Were they diagnosed as children?
Twitter: LindaOSki
says:
I’m sure it’s got to be a relief to at long last know what’s going on with Sammi and to now know how to address it. I had never heard of narcolespy in children before and yes, that’s pretty darned scary stuff.
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Wow, not the outcome I expected to hear for you guys at all, I’m sure it’s all quite overwhelming.
Twitter: pricelessteam
says:
Hope everything works out with your daughter. It must be a good feeling not guessing anymore.
I had a professor in college that was narcoleptic, but I only saw him have a ‘sleeping spell’ once. It was in the middle of class and he just closed his eyes and went to sleep. His head dropped down and he began to breathe deeply. No one in class said anything and we had no clue what to do. No one woke him up. He lightly snored. All of a sudden, he awakened and was groggy and a few minutes later, it was the first time I saw him reprimand kids in class. He did not address him falling asleep. It was like it never happened.
You could tell that it affected certain aspects of his life. He went through the entire semester calling me a different name so much so that I stopped correcting him. To this day, I don’t know if it was me or my alter-ego that earned the grade I got. When you went to meet him for consultations about your writing, he would look as if he had just waken up in his office from sleeping overnight.
I don’t know if he was medication or what he did for it – but it was known in school that he was narcoleptic so I imagine he had uncontrolled spells on more than one occasion. I had two classes with him and only saw a ‘spell’ once.
I am very proud of you for addressing this NOW.
When I was in high school, I’d go to the nurse’s office about 3 days a week, she’d take my temperature & I’d then immediately fall asleep for an hour. She’s wake me up when the class was over & I’d go to to my next class.
I’m sure she just thought it was me being a teenager, but it was pretty severe. I was TIRED & falling asleep in class. When I was in nursing school, I was so tired during the test that when I read my answers when I got my test back, I was MORTIFIED. I sounded drunk. Basically I was, drunk with sleepiness.
I talked to my professor & then to my doctor. I started taking melatonin at a prescription level in the evening & my life totally turned around. I wish this had been addressed when I was in late middle school or high school, but it wasn’t.
Still today I fight my natural sleep clock. I read an article that hypothesized that some people are genetically programmed to be awake at night/asleep during the day from back when someone in a tribe had to be awake at night to protect everyone. Seems like as likely as anything else, but when we’re in school, or parents, it’s not an okay schedule.
To Sammi:
I am very proud of you for tackling this with the help of your parents. I truly know how hard it is. You’ll be AMAZED at how many other aspects of your life fall into place when you start getting some restful sleep on a schedule that fits society’s. I had no idea how depressed I really had been until I saw a doctor. My grades went up, I had more patience for people (including my parents!), and I got sick less. Stick with it & if you find yourself slipping back into being up til 1 or 2am, talk to your mom & dad about it & don’t get down on yourself. It’s a process, but it’ll really pay off!
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Connie,
Hi! I’m not totally sure if my son has it, or if it’s because he’s a night owl by nature (he’s 12 years old). Glad to at least hear that you know what she has , and that you are working with dealing with issues connected to it. I have heard of kids having the narcolepsy.
( I’ve was seen a pulmonologist via my rheumatologist over here in Brevard County for sleep study last summer. I kept complaining of being tired and wasn’t anemic or diabetic or having any thyroid problems. I ended up going through 2 sleep studies, and ended up with a diagnosis of sleep apnea, and I do think that hypersomnia was another of the diagnoses. (I’m not on Provigil, though because I work 11p to 7a shift.)
That Epworth Sleepiness scale form was definitely a rude awakening for me, when I answered “3″ to many of the questions. )
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