How do I know if my child has a sleep issue?
What strategies can I use to promote better sleep?
Additional Sleep References
Sleep Issues in Angelman Syndrome
Many parents and caregivers report problems with sleep for individuals with Angelman Syndrome. Disrupted sleep in AS is documented in the medical literature and is common in children with neurological impairment. The sleep challenges often appear to be the most challenging in young children. These sleep problems can include difficulty falling asleep, difficulty staying asleep, difficulty achieving deep sleep and being easily awakened, and an apparent diminished need for sleep as a whole (Bruni, Didden, Pelc). Sleep is necessary to refresh the body and mind and to prevent illness. Sleep is also needed for the brain to learn and process information. Lack of sleep is associated with behavioral issues and a shorter attention span and many parents report that behaviours and learning improve when sleep is improved. Perhaps most seriously for individuals with AS, sleep deprivation can lower seizure threshold and anti-epileptic drugs can affect sleep (Malow). The relationship between an individual's seizure disorder and difficulty falling asleep should be investigated by the individual's neurologist. Thus, sleep is vitally important for health and development, and sleep issues in one individual can affect the entire family. In fact, sleep disruption has been documented in medical literature to have one of the most serious negative effects on family life, the relationship between the parents and the family's overall ability to cope. It is both necessary and "okay" to seek outside help in getting a better night's rest for everyone.
How do I know if my child has a sleep issue?
For those of you who feel as if you haven't had a good night's sleep in years, this may seem like a ridiculous question. But it is an important question to answer, especially if you are trying to determine whether or not to seek outside help.
It is important to realize that many typical infants and toddlers fail to sleep through the night and may wake easily. Thus it is important to determine if a child with Angelman Syndrome at this age has a true sleep disorder or is just behaving like many typical infants and toddlers. A toddler typically needs an average of twelve hours a day of sleep (ref Breus webMD). This might be divided into ten hours of sleep at night with two naps during the day, for example. Short-term disruptions in sleep, like those associated with illness or teething, are not considered an ongoing sleep issue.
We require less sleep as we grow older, so a teenager may require only eight hours of sleep (ref Breus WebMD), but this is usually done in one continuous span at night. If an older child or teenager does not sleep at least six hours at a stretch and their mood and attention span is affected, it is worth consulting a health care professional.
Keeping a sleep diary for at least one week is a valuable tool to help a health care professional accurately assess whether a child has a sleep disorder. The sleep diary will help illustrate what effect the lack of sleep is having on both the individual and the parents and rest of the family. Record when the individual falls asleep, how long it took for the individual to fall asleep, what interventions/methods were needed to help them fall alseep (like rocking, massage, a parent lying down with them), how long they stay asleep, all night wakings and how long each one lasted, the child's behaviour during these wakings and what methods were tried to help them fall back asleep, what happens at problem times (for example does the individual awake screaming?), their mood during the day, nap times and for how long, and any other details you feel are important such as eating patterns, illness, teething, growth spurts, hormonal issues in teenagers, mood etc. Be sure to record this information as accurately as possible each day.
TopWhat strategies can I use to promote better sleep?
Seizure control - it is important to realize that if your child is having seizures, this could negatively impact their sleep in a variety of ways. If you suspect your child is having seizures, it is important to speak with your neurologist and work to get the best seizure control possible. Some seizure medications actually induce sleep and can be scheduled to be given at night to control seizures and improve sleep. Other medications can disrupt sleep (Malow). Your neurologist can work with you to adjust nighttime dosages and assess whether a sleep disruption caused by a seizure medication is an intolerable side effect or can be medically managed. If you aren't sure if your child is having seizures, it is worth consulting with a neurologist and getting a baseline overnight EEG. This can rule in or out seizure activity and help determine if this is a factor in your child's sleeping habits. Note that lack of sleep can actually lower an individuals threshhold for seizures and thus this becomes a vicious cycle (Malow). Some children with AS have seizures in their sleep which prevent them from achieving quality sleep. Others have jerking or other non-seizure physical movements like myoclonus (that sudden jerking we have in sleep where it feels like the person is "falling") that disrupt sleep and wake the child in between sleep cycles. These physical movements can be assessed and possibly treated by a neurologist to allow the child to achieve a true state of rest during sleep.
Investigate and address other medical problems - it is common for children with Angelman Syndrome to have other medical issues that could impact their ability to sleep. Perhaps the most common is upper GI reflux , where stomach acid escapes from the child's stomach and irritates their esophagus. This reflux might be easily controlled during the day when the child is upright but escape only at night while they sleep. Individuals with AS appear to have a high tolerance for pain and may not be able to indicate pain or discomfort. A GI doctor can investigate and treat the reflux. Other medical problems that can disrupt sleep include eczema, enlarged tonsils, chronic ear infections, and sinus inflammation or dryness. These are common childhood issues and might not be related to the child's AS, but minor medical issues like eczema can create a low-level irritation that is difficult for a child to ignore when they already struggle to achieve good quality sleep. A typical child with eczema might need only a mild steroid cream to treat their eczema, while the child with AS might need more intensive attention to the same mild eczema because the irritation from the eczema is amplified for the child with sensory disfunction and/or a sleep disorder. Parents and pediatricians can pay special attention to these mild health disorders and see if addressing them improves the child's sleep.
Sensory integration techniques - many children and adults with Angelman Syndrome have sensory disfunction. Sensory disfunction can make a child feel like they are floating in air or not solidly attached to the earth. They can feel insecure either standing up or laying down and have difficulty relaxing because their body cannot regulate its response to the environment around it. These children might only seem able to sleep when pressed up against another person and might crave deep pressure, like a parent's arm over their body as they sleep. There are many products and techniques that can help these children sleep. An OT can help select a weighted blanket that is appropriate to the child's weight and age. Some parents have created their own weighted objects by stuffing tube socks with rice or beans and sewing them shut, then draping them over or next to the child as they sleep. There are a number of commercial products filled with a variety of fillings and meant to be microwaved and placed on stiff muscles; these products can be draped over a child as they sleep. For children who overheat easily, these tube socks or weighted objects can be placed in the freezer or refrigerator until bedtime. Some children sleep best in tight spaces so might sleep in their crib longer than a typical child, and might benefit from an enclosed bed. Some parents get funding for medical enclosed beds like the Pedicraft while others create an enclosed bed by putting up gates or barriers around a child's bed, or enclosing the lower bunk of a bunkbed and attaching a gate for access. Still others find ways to create the illusion of an enclosed bed with canopies or bed tents and closing in the long sides of the child's bed. All of these techniques are meant to give the child a sense of physical security by helping their body's regulate sensory information.
Good sleep practices - individuals with Angelman Syndrome respond well to learning by repetition. It is important to build on this strength by implementing good sleep practices and a sleep routine as soon as possible. All children benefit from a consistent bedtime routine but this routine can be essential for children with special needs. Many families report that any deviation in their child's bedtime routine creates a sleep disruption. There are many good sources widely available for creating good sleep habits. For example, the child's bed should be a place where only sleep occurs. Try to restrict conducting other activities on the bed and resist allowing active play like wrestling and jumping on the child's bed. At night, set up a routine that signals to the individual that it is time for sleep. This could involve a bath, toothbrushing, and a book or any other routine that is easy to take with you in case you decide to travel. Many children with AS enjoy water and music and there are a number of infant sleep toys like musical aquariums that combine these two elements to promote sleep.
Other mild and helpful things you can try to promote good sleep patterns include:
- A tepid bath before bedtime, perhaps with a little lavender oil put in the water.
- A massage before bedtime.
- Nightlights or other soft, muted lighting works for some children.
- A sound machine is often reported as successful as well.
- Sunlight is a natural signal to wake. Total darkness helps the body synthesize the hormone melatonin and maintain sleep. Using blackout blinds, heavy curtains or even completely blocking the windows can encourage sleep by reducing outside light.
- Many families report that their child with AS is very sensitive to heat and sleep best in a relatively cold room. They might benefit from all-cotton pajamas and bedding without synthetic fibers which retain heat.
It is important to note that some "good sleep" methods such as Ferberizing (the "cry it out" method) may not be appropriate for individuals with neurological disorders. While some families report success with this approach, others report that their child simply didn't learn the lesson that this method was trying to teach and the experience was traumatic for the entire family. While promoting good sleep practices is worthwhile, it is important to speak to your physician or a sleep specialist before using severe behavioral modification methods. The age and personality of the child can make an enormous difference for when any one technique will be the most appropriate and effective.
Melatonin - Research has demonstrated that the use of melatonin can help individuals with Angelman Syndrome fall asleep more readily (Braam, Zhdanova). Melatonin is a hormone produced in our brains that helps us determine when it is day or when it is night. Melatonin doesn't put you to sleep; it tells our body that it is appropriate to try to go to sleep. Melatonin sends signals to the brain about when to be awake and active or sleepy and calm by regulating core body temperature. Giving a supplement of Melatonin in the evening can correct a melatonin deficiency in a child witih AS and signal to the body that night approaches and sleep is on the way. It is also important to realize that you shouldn't give another dose of Melatonin if the individual wakes during the night. This will confuse the body and alter the response to the night/day cycle.
According to one study (Zhdanova), it is best to start with a very low dose of Melatonin. Too much melatonin can have to opposite effect and induce night terrors and anxiety. The recommendation from this study is to start an infant or toddler on 300mcg (micrograms) of a good pharmaceutical grade Melatonin and go up in dose for older children and teenagers. As side effects besides vivid dreams are not known, some neurologists are comfortable with increasing the dosage up to the standard 3 mg tablet, and even several times this dosage, even for young children. Some parents have reported good results with a time released Melatonin (such as Melatonex) which may help the individual stay asleep. Keeping a sleep diary during dosage adjustments is helpful. Guidance from a neurologist or developmental pediatrician, particularly one interested in sleep disorders accompanying developmental disabilities, may be requested.
It is important to find a good source of Melatonin! Melatonin is not regulated as a medication by the USDA; it is considered a food supplement so there can be great variability between what the manufacturer claims is in the supplement and what is actually present. Pharmaceutical grade means each batch has the correct amount of Melatonin and is quality tested and controlled.
There are anecdotal reports that some brands of melatonin are better than others. It is worth experimenting. If you tried melatonin before and it wasn't effective, it is probably worthwhile to try it again, try a different brand, a different dosage and give it several nights to take effect before increasing the dosage.
The authors of this article have had success with their own children with these brands:
Becky's experience: World Wide Labs was recommended to us by a physician and has worked well. We like that it is a pharmaceutical grade and comes in 300mcg doses. This has worked well for our daughter from 20 to 24 lbs. We have not needed to increase her dose as of yet.
Erin's experience: Puritan Pride was the only manufacturer we found effective when Maggie was much younger and they made melatonin in tiny 200 mcg dosages. As a toddler, she seemed to have the best sleep with 400 mcgs per night until she weighed about 30 lbs, then we increased it to 600 mcgs per night when she was bigger. Around age 4, the melatonin didn't seem as effective. We found Melatonex from Sunsource, a time-released 3 mg tablet, and immediately felt Maggie's sleep improved with one 3 mg dose per day. We have increased that dose during sleep disruptions to 6 mgs but did not see improvement.
Benadryl or other over the counter antihistamines - These are relatively harmless and can cause drowsiness when taken. Some parents use these on a nightly basis to promote sleep in their children with Angleman Syndrome. Others use this on an "as needed" basis if the individual is having a particularly hard time with sleep for a brief period. Ask your health care provider if this is a reasonable strategy to take with the individual in question. Also note that some individuals will react to an antihistamine in the opposite direction and experience restlessness and hyperactivity. This paradoxical reaction is, unfortunately, not uncommon in children with developmental disabilities.
Prescription Medications - When all else fails, it is useful to consider prescription medications. Common prescription medications used to promote sleep in individuals with Angelman Syndrome include Trazadone, Clonidine, and Chloral Hydrate. While we all wish to limit the amount of medication our kids need to take, sleep is such an important aspect of health and well-being that you should not hesitate to get help if you need it. Children as young as 1 year old have been put on prescription medications to help manage a severe sleep disorder.
Finally, remember that every individual is different and strategies that work extremely well for one person may not work at all for another. It may take time to determine how to best promote sleep in any particular individual with Angelman Syndrome. Perhaps the most important thing to keep in mind is that most families report that sleep improves over time. Many parents report that by the time their child with AS is a teenager, the child loves their sleep as much as their typically developing teen peers.
TopFor useful discussions of promoting sleep, please see these books:
Durand, M. Sleep Better! A Guide to Improving Sleep in Children with Special Needs
For a discussion of sleep in the Angelman Syndrome literature, please see:
2. Breus MJ. How much sleep do children need. WebMD physician authored article.
5. Malow BA. The interaction between sleep and epilepsy. Epilepsia 2007;48 Suppl 9:36-8. Review.
TopThe Content above is for informational purposes only, it is not a substitute for professional medical and or therapeutic advice, diagnosis, and/or treatment. Do not attempt to implement therapies without first seeking the advice of a professional therapist or medical provider as treatment has many consequences that must be medically and therapeutically addressed.