Future Reflections Summer 2009
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by Stephanie Kieszak-Holloway
From the Editor: For parents with a new baby, the issue of obtaining a good night's sleep can become all-consuming. Blind children sometimes experience sleep disorders, and sleep deprivation can be a distressing problem for their parents. In this article Stephanie Kieszak-Holloway, president of the Georgia Organization of Parents of Blind Children, describes a non-invasive treatment that made a dramatic difference for her daughter and for the whole family.
It's 3:00 a.m. and the baby's day has just begun. You, however, are so sleep-deprived that you can barely function. Your baby seems determined to stay awake all night and sleep all day for weeks on end. Then things seem like they are finally settling down and the baby sleeps at night for a while. Lulled into thinking the worst has passed, you are shocked and dismayed when your little bundle of joy once again starts staying up all night.
Sound familiar? For children (and adults) without light perception, such a pattern is not uncommon.
My daughter Kendra spent the first fifteen months of her life with an undiagnosed sleep disorder. We were desperate for answers, but neither our pediatrician nor our pediatric ophthalmologist was able to help. I lost count of the number of times we were told we just needed to be more firm with Kendra, that we had to let her cry it out.
I finally discovered a center for pediatric sleep disorders in Atlanta and called for an appointment. Before we took Kendra in, we were asked to graph the times when she was asleep each day, using a sleep diary. When we studied the graph we made a startling discovery. The sleep times that seemed so random and confusing to us in our own sleep-deprived state were very obviously part of a pattern. Kendra's bedtime shifted by half an hour to an hour each night. Eventually, it seemed like things were back to normal, but we had simply reached the phase where her sleep times coincided with typical ones. After meeting with the doctor, we finally had a diagnosis: free-running (nonentrained) type, which is one of several circadian rhythm sleep disorders. It may also be referred to as non-twenty-four-hour sleep-wake syndrome or free-running disorder (FRD).
Circadian rhythms are biological cycles which last for approximately twenty-four hours. An example of a circadian rhythm in animals is the cycle of sleeping and waking. In a circadian rhythm sleep disorder, the typical twenty-four-hour cycle is disturbed. Jet lag is one common example of a circadian rhythm sleep disorder. Kendra's day, before light therapy was initiated, was approximately twenty-five hours long instead of twenty-four.
Melatonin is often used to treat sleep disorders. It is a neurohormone produced in the body by the pineal gland. Although melatonin has been demonstrated to be safe when administered for short periods of time (weeks or months), there have not yet been any studies to look at the long-term effects of melatonin supplementation. We were hesitant to administer melatonin to Kendra, and were very pleased when the doctor recommended an alternative. He suggested light therapy. It seemed like a crazy treatment to use with a child who had no light perception, but by that point we were open to trying almost anything.
The particular light box we used was the North Star 10,000 from a company called Alaska Northern Lights <www.alaskanorthernlights.com>. The morning after it arrived, we tried it out by putting it on the kitchen table in front of Kendra's highchair while she had breakfast. She sat in front of it for approximately thirty minutes. Some mornings we put toys on the highchair tray to keep her occupied for the full time. Now that she's older, we have a tape player and CD player on the table to keep her entertained.
We noticed a difference in Kendra's sleep patterns very soon after we started the light therapy treatment. You may ask, as we did, how light therapy can possibly work for a person who has no light perception. Kendra's doctor explained to us that the light influences the pineal gland (sometimes referred to as the third eye). As mentioned earlier, the pineal gland produces the body's melatonin.
Kendra is now almost seven years old. I can count on my fingers the number of days we have skipped her morning light therapy since we began over five years ago. During the last Christmas vacation we did conduct our own extremely unscientific study to see what would happen if she went for a few days without her light box. We noticed that her sleep schedule was starting to shift so we quickly resumed its use. Kendra's light box has traveled with us to New York, New Jersey, Texas, Kentucky, and several other locations. It will be with us in Detroit for the 2009 NFB convention. The benefits of its use far outweigh the costs or hassle of lugging it with us on vacations.
There are several types of sleep disorder, and not all of them will respond to light therapy. This article should not take the place of speaking with your doctor. I was motivated to write this piece after I spoke with several parents at the NFB's 2009 Beginnings and Blueprints conference. Many of the parents I met seemed to be at the same place we were years ago. I hope that our story will help others locate the information and services they need so they can finally get a good night's sleep.
To locate a sleep center, visit <www.sleepcenters.org>. A sample sleep diary may be found at <http://www.sleepeducation.com/pdf/sleepdiary.pdf>.
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