Alli's Daily Routine as a Kid to Combat Sleep Attacks
Reviewed by Poonam Sachdev on February 18, 2022
Video Transcript
[MUSIC PLAYING]
SUBJECT 1: Growing up, Ali was always full of energy. She was a very normal child. Did dance when she was younger, did company dance, played multiple sports.
Everything was normal until about her fifth grade year when the signs started emerging for narcolepsy.
SUBJECT 2: I noticed something was kind of weird because I've never slept in as long as I was.
SUBJECT 1: Sometimes till 3:00 or 4:00 in the afternoon. And we couldn't wake her up.
Then when she started sixth grade, the first week of sixth grade, she collapsed in homeroom on the second day of school with what we now know was a narcolepsy with cataplexy spell.
[HEAVY, RAPID BREATHING]
[MUSIC PLAYING]
[BIRDSONG]
SUBJECT 1: On a daily basis we had to adjust to setting alarms, making sure that we gave her medication at the same time.
SUBJECT 2: If I get my routine off or something like that, it's just not a very good day.
SUBJECT 1: When I get up every morning I'll wake her up, check her sleep watch, see how she slept. If she did not sleep well, I'll let her go back to sleep for a while. If she did sleep well, then I'll go ahead and wake her up and give her her medication.
Really never knowing anything about narcolepsy when the diagnosis was given, all I knew about was what we've seen on TV, which is completely different in real life, it turns out. But my fear was her having the ability to have a normal life, play sports, drive, attend school normally. So I was very fearful of all of that.
She takes a nap when she feels she needs it. No more than 45-minute nap so that her body just has a little bit of a rest period, but doesn't go too deep. There's days where-- where you can't send her to school because we know she's going to have an attack. If we're traveling, we have to make sure we take lots of extra meds. So it's really just a big adjustment.
SUBJECT 2: The medication prevents me from having an attack every day. Whenever I didn't have my medication, I was having attacks maybe every three hours.
SUBJECT 1: We have her go into her room about 9:30, go through her bedtime routine and start relaxing and getting ready to get her medication and trying to fall asleep.
We learned through research and through talking with the doctors that there was lots that they can do to allow her to have a normal life once we got her medicated and everything kind of regulated for her on a daily basis.
[CRICKETS CHIRPING]
SUBJECT 1: Growing up, Ali was always full of energy. She was a very normal child. Did dance when she was younger, did company dance, played multiple sports.
Everything was normal until about her fifth grade year when the signs started emerging for narcolepsy.
SUBJECT 2: I noticed something was kind of weird because I've never slept in as long as I was.
SUBJECT 1: Sometimes till 3:00 or 4:00 in the afternoon. And we couldn't wake her up.
Then when she started sixth grade, the first week of sixth grade, she collapsed in homeroom on the second day of school with what we now know was a narcolepsy with cataplexy spell.
[HEAVY, RAPID BREATHING]
[MUSIC PLAYING]
[BIRDSONG]
SUBJECT 1: On a daily basis we had to adjust to setting alarms, making sure that we gave her medication at the same time.
SUBJECT 2: If I get my routine off or something like that, it's just not a very good day.
SUBJECT 1: When I get up every morning I'll wake her up, check her sleep watch, see how she slept. If she did not sleep well, I'll let her go back to sleep for a while. If she did sleep well, then I'll go ahead and wake her up and give her her medication.
Really never knowing anything about narcolepsy when the diagnosis was given, all I knew about was what we've seen on TV, which is completely different in real life, it turns out. But my fear was her having the ability to have a normal life, play sports, drive, attend school normally. So I was very fearful of all of that.
She takes a nap when she feels she needs it. No more than 45-minute nap so that her body just has a little bit of a rest period, but doesn't go too deep. There's days where-- where you can't send her to school because we know she's going to have an attack. If we're traveling, we have to make sure we take lots of extra meds. So it's really just a big adjustment.
SUBJECT 2: The medication prevents me from having an attack every day. Whenever I didn't have my medication, I was having attacks maybe every three hours.
SUBJECT 1: We have her go into her room about 9:30, go through her bedtime routine and start relaxing and getting ready to get her medication and trying to fall asleep.
We learned through research and through talking with the doctors that there was lots that they can do to allow her to have a normal life once we got her medicated and everything kind of regulated for her on a daily basis.
[CRICKETS CHIRPING]
