American Action Fund for Blind Children and Adults
Future Reflections       Winter 2022      EARLY CHILDHOOD

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Sleep in Blind Children: A Mystery

by Carla Keirns

Reprinted from Braille Monitor, Volume 64, Number 10, November 2021

Carla KeirnsFrom the Editor: Carla Keirns is a doctor of internal medicine and a professor at the University of Kansas School of Medicine. She is active in the Missouri affiliate of the National Federation of the Blind, and she serves on the board of the National Organization of Parents of Blind Children (NOPBC).

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 children 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 fourteen hundred 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 our son 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 the new childcare. 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. After a while he went back to sleep.

But the situation didn't really get better. Within two months he gradually shifted. He did start sleeping longer than three hours at a stretch, 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, and it was hard to awaken him at 7:00 for preschool. He napped two to three hours after lunch, and then he was up until 3:00 a.m. again.

I talked to his pediatrician, and she said that all little kids have sleep problems. "But it's all behavioral," she told me. "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 of 3:00 a.m.

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 2:00 a.m. like it's the middle of the day."

I asked his eye doctor if it could be related to 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 out. 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 its use with 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 or 2:00 a.m., even with strict routines in place.

A full year passed—with no answers. I was desperate. Our son's sleep issues were 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. 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 my search 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 was only a handful of studies, less than ten or so involving children. One of the most on point was nearly forty years old. Conducted at a school for the blind in South Africa, it documented sleep problems. The kids with albinism had suppressed melatonin. The hormone that tells the body to go to sleep was missing. It was suppressed because the children got too much light.

The connection between light and sleep 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. It 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 body's circadian rhythm. But if you have albinism or aniridia, even indoor light can be very bright for you. It's as though the lights in the living room were tricking my son's brain into thinking 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 dark made sense.

I started giving melatonin to my almost four-year-old. Within a week it was clear we were on the right track. Within two weeks he was going to sleep by ten p.m. It took a couple more weeks to get the dose and timing right, and then he was 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," they told me. 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 3:00 a.m. every night, and twelve months after I started him on melatonin on my own. I told the doctor our story. He laughed and said, "You figured it out. What do you need me for?"

"I'm not a pediatrician. Is it safe? How much should I give him? Does he need to take breaks? How will I know if he doesn't need it anymore?"

The doctor was knowledgeable and kind. He answered all my questions in about fifteen minutes. As long as our son 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 anymore, it took a few months and lots of trial and error to find something else he would take. Gummies? Nope. Dissolving tablets? Unh uh. Chocolate? You would have thought, but I could only find it hard-candy coated, and my kid would not try it. Finally, one of his teachers said there were flavorless capsules at the health-food store. We were set again.

When we went for follow-up, I told the sleep doctor that I saw inquiries about this problem at least once a month in the parents of blind kids and albinism Facebook groups. At the meetings of NOAH (National Organization for Albinism and Hyperpigmentation), I asked the scientific experts on albinism if they knew anything 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 the problem. He said he had a handful of similar 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 to gather information. 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 for help from the National Federation of the Blind and NOAH. 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 to 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, José 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 that sleep issues and lack of adequate sleep contribute to diabetes, high blood pressure, heart attacks, and possibly Alzheimer's disease.

Recommendations vary, but most experts suggest a medical evaluation if sleep problems last longer than two to four weeks. This is especially true if the change is severe or sudden, if there are other concerning symptoms, or if more straightforward advice isn't helping.

A careful sleep history is critical to making sense of sleep problems.

There may be many more questions, because the evaluation of the likely cause determines the next steps. A doctor may order tests for iron levels, levels of vitamin D and other vitamins, levels of hormones such as cortisol, thyroid tests, 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 stages 1 to 4 and back to 1 in sixty to ninety minutes, with some variation by age. Over the course of the night the REM periods will become 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 those 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. Low iron in kids can be due to a number of factors, and it needs its own evaluation. One cause we missed in my own son is too much milk intake. The cells that absorb iron in the intestines are the same ones that absorb calcium, so they can compete with each other.

The recommendations following evaluation may include changes in diet and medications such as melatonin. The doctor may recommend the use of a light box for thirty to sixty minutes in the morning. A light box is a special artificial light that gives the full spectrum of wavelengths to mimic the sun. Sleep apnea may be treated with surgery to relieve airway obstructions or with continuous positive airway pressure (CPAP).

All those people who gave us the list of sleep tips were not wrong. Those tips are excellent advice for anyone. They 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, a snack, and/or a 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 article is a summary of my longer paper on the topic. The full paper is available via "open access." It is free for anyone to read here:
https://journals.healio.com/doi/10.3928/01913913-20210623-01?fbclid=IwAR089Zhk3NK0qmmh-P0Ntnd_WBTIxsFNRwRc4u05DupCxgWFPFLDC5sq0N8

Recommended Resources:

National Institute for Child Health and Human Development on Sleep
https://www.nichd.nih.gov/health/topics/sleep

Centers for Disease Control: "Do Your Children Get Enough Sleep?”
https://www.cdc.gov/chronicdisease/resources/infographic/children-sleep.htm

Mayo Clinic Health System: "Is Your Child Getting Enough Sleep?"
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/is-your-child-getting-enough-sleep

HealthyChildren.org, A website of the American Academy of Pediatrics: “Healthy Sleep Habits”
https://www.healthychildren.org/English/healthy-living/sleep/Pages/healthy-sleep-habits-how-many-hours-does-your-child-need.aspx

American Family Physician: “Common Sleep Disorders in Children”
https://www.afp.org/afp/2014/0301/p368.html

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