Patients with X-linked hypophosphatemia (XLH) may experience sleep problems. Good quality sleep is essential to maintain physical and mental health. It may be helpful to practice sleep hygiene to improve your or your child’s sleep quality.
About XLH and sleep disturbances
The main reason XLH causes sleep disturbances is chronic pain. The pain may make it hard for you or your child to fall asleep and to get restful sleep. Some treatment schedules can also lead to interrupted sleep since you or your child may need to take doses during sleeping hours.
Chronic illnesses such as XLH can also lead to stress, anxiety, and depression, which can interfere with restful sleep.
What is sleep hygiene?
Sleep hygiene involves behavioral changes you can make to help improve sleep. Good sleep hygiene can help you or your child feel more alert and active during the day.
Sleep hygiene tips
In addition to painkillers and changes to when you or your child take your medications, there are a number of other tips that can improve the ability to fall asleep, stay asleep, and get more restful sleep.
Sleep hygiene can actually start during the daytime. Ensure you or your child gets plenty of sunlight during the day. This is because the light helps to regulate circadian rhythms (the normal wake and sleep cycle).
Regular exercise, as symptoms and pain levels allow, can also make it easier to sleep at night in addition to improving general health.
Try to limit any naps to the early afternoon, and make them relatively short, as they can make it harder to fall asleep at night.
Avoid caffeine and nicotine in the afternoons and evenings; they are stimulants and will make you or your child more alert. Remember that chocolate and soda also contain caffeine. You also should avoid large, heavy, or spicy meals later in the evening.
Your behavior in the hours before bed can also affect your or your child’s ability to fall asleep. Try to keep a regular routine before bed each night, including the time you go to bed.
Try to avoid bright lights. These can interfere with the production of a molecule called melatonin, which is critical for circadian rhythms.
Stop the use of electronics a half-hour to an hour before bed as they can be mentally stimulating and the blue light they emit can also interfere with melatonin production.
Thirty minutes before bedtime, try some relaxing activities such as reading, light stretching, or listening to soft music to help wind down.
Once in bed, if you or your child have not been able to fall asleep after 20 minutes, try some more relaxing activities with dim lights before returning to bed. This will help you or your child associate the bed with sleeping and can help with stress or anxiety about not being able to fall asleep.
If you or your child struggles with pain at night despite medications, a warm bath or heating pads may help to ease the pain enough to fall asleep.
Adjustments to the bedroom
Modifications to your or your child’s bedroom may also help. Make sure that the mattress and pillow are comfortable to help ease pain and discomfort. Set the temperature in the bedroom to a comfortable level, but keep it more on the cool side. Blocking light and noise can also help.
If you or your child are still having a hard time getting restful sleep, speak to your doctor about other possible options. These may include medications and undergoing a sleep test to look for any abnormalities, such as sleep apnea, which could be leading to sleep disturbances.
Last updated: Dec. 11, 2020
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