by Carla Keirns
From the Editor: Dr. Carla Keirns lives with her family in Kansas City, Missouri. She is a doctor of internal medicine, a professor at the University of Kansas School of Medicine, and a member of the National Organization of Parents of Blind Children Board. She is also an active member of her chapter and affiliate. Carla has a son named Russell, and he has been a regular participant in our BELL Program. Here is what Carla has to say about sleep and blind children:
My baby was a great sleeper. Like normal babies, he needed milk every two to three hours initially. But as he got bigger, he could eat more at once, and by eight weeks he was sleeping a block of six hours most nights. By four to five months it had gotten to nine to eleven hours.
Babies normally sleep short segments throughout the day and a longer period at night. They do their own thing. As they get older, toddlers and preschoolers gradually transition to consolidated sleep at night and one nap during the day, and by kindergarten most stop napping.
We hit a snag when my son turned two. We moved across the country from New York to Kansas City. Strange men came and packed up everything we owned into a big truck and took it away. Mommy and Daddy each took a car and drove 1,400 miles. Our little boy came with me, and we broke up the drive by stopping to see family along the way. When we got to our new home, it was full of boxes. The following Monday he started at a new day care. He was not having it. He was stressed and overwhelmed by the move, the week long cross-country drive, and all new child care. He didn't understand what was happening. He cried every day at day care drop off for three weeks. On the third day he cried so hard and for so long that he threw up several times. The staff called me to pick him up, and after that he was fine.
He also regressed in sleep. He started waking up every three hours again for a cuddle, milk, and maybe some lullabies. We had twenty-two different renditions of Twinkle, Twinkle on my phone. Then he went back to sleep.
But it didn't really get better. Within two months he gradually shifted. He did start sleeping longer than three hours but only on weekends from 3:00 to 9:00 a.m. He was up until 2:00 to 3:00 a.m. every night, hard to awaken at 7:00 for preschool, napped two to three hours after lunch, and then up until 3:00 a.m. again.
I asked his pediatrician, and she said all little kids have sleep problems, "But it's all behavioral. Kids don't have organic sleep disorders." She gave me a list of sleep rules for kids to encourage good habits.
It helped. He started falling asleep at 2:00 a.m. instead.
When I asked his doctor again, I got the same list. His teacher gave me the list. The "sleep guru" at school had some great advice about limiting his nap time so he would be more tired—and yes, the list.
I asked about seeing a sleep medicine specialist, but the pediatric sleep doctors at our local children's hospital won't see children unless their pediatricians refer them. Parent referrals are not accepted.
One night I was on call for the hospital and was on the phone with a colleague who is the father of four now-grown children. While we were talking about a patient, my son came up and asked me something. My colleague said, "That’s a very awake three-year-old."
I said, "Yeah, he's like that every night—dancing on the bed at 2 a.m. like it's the middle of the day."
I asked his eye doctor if it could be his eyes. He has albinism, an eye condition that causes photophobia because the irises and whites of his eyes are missing a pigment layer that acts like blackout curtains in your eyes. His eyes literally leak light through structures that are supposed to block it. His doctor shrugged and said he had never heard that.
I asked his pediatrician about melatonin, and she said there is not enough data on it in kids. She couldn't recommend it.
We were referred to behavioral medicine. More recommendations about routine, behavior, following directions, and play therapy were given. It made no difference. Were we doing it wrong?
He was still up past midnight every night, usually until 1:00 to 2:00 a.m., even with strict routine according to the list. A full year passed—with no answers. I was desperate. It was ruining my health and threatening my job.
I started searching the medical literature. I had done this before, trying to figure out if melatonin was safe to use. But I found a lot of confusing and scary studies, particularly from Europe and Australia, about possible links between melatonin and developmental disorders. This time I started with circadian rhythm and albinism. There were thousands of studies—in mice. Albino mice have been standard lab animals for medical and psychological research for decades, and they are known to have abnormal sleep cycles.
But I didn't have a mouse, I had a little boy. There were only a handful of studies, less than ten or so involving children. One of the most on point was nearly forty years old. Done at a school for the blind in South Africa, it documented sleep problems. Their kids with albinism had suppressed melatonin. The hormone that tells your body to go to sleep was missing. It was suppressed because they got too much light.
This is why you are told to dim the lights before bedtime, to avoid screen time within an hour of sleep, and to make sure your bedroom is dark. This is also why people who work evening and especially night shifts have a difficult time sleeping. Exposure to bright light, particularly full-spectrum sunlight, resets the circadian rhythm. But if you have albinism or aniridia, even indoor light can be very bright for you. It's like the lights in the living room were tricking my son's brain to think it was the middle of the day. It's not just that he wouldn't sleep; he wasn't tired. The fact that he wasn't tired until five hours in the darkness made sense.
I started giving my almost four-year-old melatonin. Within a week, it was clear we were on the right track. Within two he was going to sleep by 10:00 p.m. It took a couple more weeks to get the dose and timing right—asleep by 9 p.m. The angels started singing, or maybe it was just a hallucination from my sleep-deprived brain.
I went back and asked his pediatrician about melatonin. Again, not enough data in kids was her reply. I can't recommend it. But if it's working for you, give it a try.
I asked for a referral to sleep medicine; she sent one. They called. The clinic is very busy. It was summer. We were given an appointment for the following March. Then we got a call in January; they had a conflict and would need to move us to May. We waited. I gave him melatonin in his milk every night at bedtime. It was life changing.
We finally got to see the sleep doctor thirty-four months after my son started staying up until 3 a.m. every night, and twelve months after I started him on melatonin on my own.
I told the doctor our story, and he laughed and said, "You figured it out. What do you need me for?"
"I'm not a pediatrician. Is it safe? How much do I give him? Does he need to take breaks? How will I know if he doesn't need it anymore?" He was knowledgeable and kind. He answered all my questions in about fifteen minutes. As long as he got his melatonin, we all slept happily ever after. If we ran out, we felt it that night. When he decided he didn't like the raspberry or grape liquids any more, it took a few months and lots of trial and error to find something else he would take. Gummies? Nope. Dissolving tablets? Uh uh. Chocolate? You would have thought, but I could only find it hard candy coated, and my kid would not try them. Finally, one of his teachers said there were flavorless capsules at the health food store. We were set again.
When we came for follow up, I told the sleep doctor that I saw inquiries about this at least once a month in the parents of blind kids and albinism Facebook groups. At the NOAH meeting I asked the scientific experts on albinism if they knew about sleep issues. They shrugged and looked at each other. Nope. But the audience members, adults with albinism and their parents, started telling their own stories—lots of them.
We went back to see the sleep doctor for routine follow up. I said we should study it. He said he had a handful of these patients. I said, "How many?" He said maybe ten. I said, "You know that visual impairment serious enough to require special education is a less than 1/1000 diagnosis in kids? Maybe more like 1/2000? (These numbers come from special education enrollments and are known to be undercounts. By how much no one knows.) Even in his practice, they are over-represented. This is the problem with rare diseases. The small numbers distributed throughout the country mask the extent and seriousness of the problem.
We finally agreed to try. Our sleep doctor recruited colleagues in sleep medicine and ophthalmology. I asked for help from a friend who is a sleep researcher. We worked with our local preschool for blind children, where lots of parents reported sleep struggles. We asked the National Federation of the Blind and the National Organization for Albinism and Hypopigmentation (NOAH), and they reviewed our survey and agreed to share it with their members.
Eighty-nine percent of kids with visual impairments whose parents completed our survey reported sleep scores consistent with a diagnosable sleep disorder. Boom. Thanks to all of you and a group of doctors and professionals in Kansas City who listen to moms. Now we have some answers for those sleep-deprived kids and their families and some guidance for their pediatricians. Thank you, David Ingram, Jose Cruz, and Erin Stahl!
What can you expect if you see a doctor for sleep problems? Sleep is a complicated and essential process to keep us healthy and restore the brain and body for the next day. Sleep problems lead to more attention and behavior problems, injuries, mental health problems, and obesity. In adults there is evidence sleep issues and lack of adequate sleep contribute to diabetes, high blood pressure, heart attacks, and possibly Alzheimer disease.
Recommendations vary, but most experts suggest a medical evaluation if sleep problems last longer than two to four weeks, particularly if the change is severe or sudden, there are other concerning symptoms, or more straightforward advice isn’t helping. A careful sleep history is critical to making sense of sleep problems: Does the child have trouble falling asleep or staying asleep? Is the child waking with movements particularly of the legs, heat, cold, sweats, racing heart, fear/nightmares? Is the child waking up with breathing problems or is he/she snoring? Does the child experience heartburn after meals or lying down? Are there problems with coughing or hiccupping? Is there daytime sleepiness?
There may be many more questions, because the evaluation of the likely cause determines next steps. A doctor may order tests for iron levels, vitamin D levels, other vitamins, hormones such as cortisol, thyroid, or tests for any medical condition they think might be the underlying problem. Kids with neurological or hormonal/endocrine diagnoses are known to be more likely to have sleep disorders, as are kids with developmental delays and disabilities. Some children will be recommended for an overnight sleep study, where brain waves, oxygen levels, breathing, and body movements are tracked. The brain waves are followed through the night to be sure the child is progressing normally through the early and deeper levels of sleep, entering restful stage 4 sleep, and re-emerging into rapid eye movement or REM sleep when we dream. It is normal to progress through these stages from 1 to 4 and back to 1 in 60-90 minutes, with some variation by age. Over the course of the night the REM periods will be longer, which is why there are more dreams in the second half of the night. It is normal for most of the body’s muscles to be paralyzed during sleep, except for the diaphragm that controls breathing and “smooth muscle” such as in the internal organs and blood vessels. If this mechanism doesn’t work, a person could act out their dreams physically and hurt themselves.
“Restless leg syndrome (RLS)” is a common condition in adults and children associated with low iron levels, though in kids it presents with more of a pattern of poor sleep and overall body movements. And low iron in kids can be due to a number of factors and needs its own evaluation. One cause we missed in my own son is too much milk intake—because the cells that absorb iron in the intestines are the same ones that absorb calcium, and so they can compete with each other.
The recommendations may include changes in diet, medications such as melatonin or others, use of a light box for 30-60 minutes in the morning (a special artificial light that gives the full spectrum of wavelengths to mimic the sun), treatment of sleep apnea with surgery to relieve airway obstructions or continuous positive airway pressure (CPAP).
And all those people who gave us the list of sleep tips were not wrong. It’s excellent advice for anyone. It just won’t fix the problem if you have an undiagnosed or untreated medical reason for sleep problems. Have a regular bedtime routine. Wind down in the evening: no caffeine for at least six hours before bed, no vigorous exercise for two hours and ideally no screen time for one to two hours. A bath, snack, and/or bedtime story can be helpful. Keep the bedroom cool and comfortable, and ideally keep it for sleep, with play, study, and electronics in other rooms of the house.
For people who are blind or visually impaired, light is probably key—with some of us getting no light to anchor our body’s internal clocks (causing non-24) and others getting too much and confusing them. By the time he was six, my little boy could explain that “lights in the house trick my brain and make it think it’s the middle of the day so I’m not tired at bedtime.”
This has been a summary. The full paper is available via “open access,” free to anyone to read at: https://journals.healio.com/doi/10.3928/01913913-20210623-01?fbclid=IwAR089Zhk3NK0qmmh-P0Ntnd_WBTIxsFNRwRc4u05DupCxgWFPFLDC5sq0N8
National Institute for Child Health and Human Development on Sleep
Centers for Disease Control: Do your children get enough sleep?
Mayo Clinic Health System: Is your child getting enough sleep?
HealthyChildren.org, A website of the American Academy of Pediatrics: Healthy Sleep Habits
American Family Physician: Common Sleep Disorders in Children