A Guide to FD Families Struggling with Sleep
Children and adults with familial dysautonomia (FD) often have difficulty sleeping. This may include difficulty falling asleep, staying asleep, or waking up too early. This creates distress for both the person affected and often their family too, who remain awake providing 24-hour care.
Another complication occurring during sleep that is very important to note, but is not the main focus of this article, is that 91% of all children and 85% of all adults with FD have some degree of sleep disordered breathing which is a dangerous health condition that should be addressed to help prevent health consequences including heart disease and even sudden unexpected death during sleep, which remains one of the leading causes of death in FD. This can and should be addressed through a sleep study and positive airway pressure (PAP) therapy.
But for difficulty with sleep onset, maintenance and duration, unfortunately there is no machine or magic pill to correct this problem. Hypnotic or sedative medications have many ill effects, and may not even be effective, especially over time. But there is hope for better sleep through a variety of measures called sleep hygiene! Practices of sleep hygiene promote a healthy circadian rhythm which guides our state of being awake in the day and asleep at night, and has a higher risk of becoming distorted in people with neurodevelopmental disorders, which occur in FD to varying degrees. Effective sleep hygiene should control factors of bedroom environment and sleep scheduling, include possible melatonin use and promote sleep for the caregivers.
Checklist for Sleep Environment
- Elevation of the Head of the Bed (from the waist-up, not just the head and neck) can improve acid reflux and reduce factors of obstructive sleep apnea which are dangerous and can cause awakening.
- Mattress Quality. Gel or foam toppers may be more comfortable, prevent sliding down if elevated, and prevent pressure ulcers. Some people may prefer a slightly firmer mattress, but it shouldn’t be hard. Kids under age 3 should also not use gel or foam bedding due to risk of suffocation.
- Excessive sweating or incontinence. A Supracor sheet can also provide cushion and help keep the user dry and comfortable. The bedroom temperature should also be cool, around 60-70 degrees F. And a bedroom fan, even if not blowing directly on the person can be helpful.
- Bedding can be very important to people with neurodevelopmental disorders. They can have a preference for either light or heavy blankets for example, or a certain blanket they love.
- Weighted blankets may be helpful for people with sensory issues and can enhance release of oxytocin and serotonin which promote good feelings. But should be used only up to the hips in those with FD to avoid extra weight on the chest related to the prevalence of sleep disordered breathing. They should also not be used in those younger than age 3 due to increased risk of suffocation.
- Lighting. Seeing plenty of natural light in the daytime through open windows or being outdoors, then having a completely dark room at night can help to establish a healthy circadian rhythm and release of melatonin at night.
- Screentime or the viewing of screens with “blue light” from TVs, cell-phones, computers, and games, should be eliminated from at least 30 minutes prior to bedtime.
Sensory Control in the Environment
People with neurodevelopmental disorders can have difficulty processing too much information all at once, which results in cognitive overload and stress. These can include sights, sounds, scents, and touch. So, the bedroom environment needs to be made unexciting and relaxing for them.
- Have soft, pastel, limited colors in the bedroom.
- Avoid bright, colorful, high-contract objects and linens around the bed.
- Again, avoid light in the bedroom at night. Use blackout curtains to block out city lights if needed.
- If fearful of the dark a very dim nightlight could be used. But it should be out of direct sight, as some people tend to stare directly at the light source, and this “light-gazing” can keep them awake.
- The environment should be very quiet if possible. Limit sudden, intermittent sounds such as the bedroom door opening to check on the sleeping person. A baby monitor can be a better option for surveillance if needed.
- If a quiet environment is not possible due to city or other noises, soft-volume white-noise machines or soundscapes for sleep create soothing noise which can mask out other sounds. Avoid stimulating soundscapes which may include occasional bird chirping or other intermittent noise which may be attention-grabbing. There are many free playlists on sites such as YouTube that play relaxing noise for 8-12+ hours!
- Humidifiers, fans and other light-noise making devices can also make the bedroom more relaxing.
- This link is a useful review of free sources for white noise and other sounds to help combat insomnia.
- Scents and Touch:
- Aroma therapy can help relaxation before bed. This can include lotions, massage oil, oil diffuser, or linen spray. No essential oils should be applied directly to skin as they can be very irritating. Lavender or vanilla are some of the most common calming options.
- A light massage given at bedtime can increase relaxation and oxytocin levels. This should include gentle, rhythmic, repetitive, and slow movements.
- Light, gentle hair brushing can also help.
- A lightly vibrating or buzzing pillow or bed may help. There are devices that can be placed under or beside a mattress to create this, some of which also make white noise. Also, an alternating air cell mattress pad can have the double effect of creating a nice quiet buzzing sound and feel, while preventing pressure ulcers!
- Bedding should match the user’s preference, but trial and error can be useful to find if light or heavier bedding, or a soft fluffy blanket can be helpful.
Checklist for Sleep Scheduling
- Activity should be encouraged during the day. If there is excessive time spent being a “couch potato” or being both physically and mentally passive and not engaged in the day, it can lead to excess energy at night. Even 10-30 minutes of aerobic exercise (walking, rolling, playing, etc.) daily can improve sleep at night.
- But vigorous exercise or rowdy play within 3 hours or sleep can also be too stimulating and have lingering effects that delay sleep onset.
- Short naps in the day are ok, but should be limited to <30 minutes and no later than 4 pm to not interfere with nighttime sleep.
- Having routine hours for sleep and wake time is important to a healthy circadian rhythm. There should be no more than a 1-hour difference in bedtime and the time of getting out of bed in the morning throughout the week and weekends.
- People with developmental disorders can lack perceiving normal social cues. So a bedtime ritual or routine that provides more cues for sleep can be very helpful by establishing an order leading up to sleep.
- A sample routine: Shower-Pajamas-Light Snack and Medications-Use the bathroom-Brush Teeth-Listen to Quiet Music for 10 minutes-Read for 10 minutes-Go to Sleep. This can be posted on the wall as a reminder of what is needed before bed.
- Reading stories, lullabies, or prayers at bedtime can be relaxing, though sometimes a new or exciting book or a children’s book that plays noises can also be too stimulating. Drawing is another sometimes soothing activity before sleep.
- Use of other sleep associations can be very important for those with developmental disorders. This may include use of rocking, a warm bath, or being fed before bedtime.
- Avoid dinners with a lot of fatty, fried, spicy foods, or with citrus or carbonation, as it could exacerbate heart burn which can prevent sleep or cause nightly awakening. Large meals should be earlier in the evening as well, not within 2 hours of bedtime to also reduce reflux that causes heart burn. Excessive daytime or later evening caffeine should also be avoided.
- But a small carbohydrate snack may be helpful before bedtime, as hunger can keep people awake.
- A favorite TV show or movie before bed can actually be calming for some, but can be too stimulating for others.
Some people may benefit from melatonin supplementation. But it is very important to note that if the above factors of sleep environment and scheduling are not addressed, then melatonin will more likely also be ineffective. Likewise, the above factors may be failing as a result of a melatonin deficiency. So, if the above factors are being addressed, then melatonin supplementation could be tried.
Melatonin is available over the counter as a dietary supplement. It should be purchased from a well-known, reputable supplement company.
Timing: should be given 30-60 minutes before bedtime to help with sleep onset.
Dosing: doses from 0.5 mg up to 3 mg should be effective for most people and safe. Larger dosing could increase daytime sleepiness or have worse cognitive and other side effects.
Melatonin has a short duration of effect, in other words it likely will not help a person stay asleep all night. This is another reason why addressing the above factors is the most important. Extended duration forms are available in other countries, but not in the US.
Caring for the Caretaker
Finally, it is true that a caretaker cannot effectively care for others if they are not caring for themselves. Parental stress can be perceived by children and adults with difficulty sleeping, and cause further stress, compounding the problem for everyone. The above measures should be taken for the caretaker as well, to help parent and child get the sleep they need.
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