- Chronic insomnia includes difficulty with sleep initiation and/or maintenance despite adequate opportunity for sleep and reasonable sleep environment, as well as an associated impairment in daytime function (e.g., daytime behavior) that is causing distress to individual or familial function. This distress is usually focused on the potential impairment to daytime function as a consequence of insufficient sleep.
- Children with a variety of neurodevelopmental conditions, including Autism Spectrum Disorders (ASD), prenatal alcohol exposure (PAE), and attention deficit disorder (ADD) have high prevalence of chronic insomnias and sleep difficulties that cause significant stress on caregivers and families. Treatment of insomnia in those with special needs poses a particular challenge.
DeAndre's Story
DeAndre is a 14 year old who comes to clinic with his adoptive mother, Simone, whose primary concern is that DeAndre has a hard time staying asleep through the night and is tired during the day.
Simone states that DeAndre has had sleep difficulties since they adopted him at 5 years of age. Currently, she is not sure what time he actually ends up falling asleep, but suspects that it is around 1-2 AM, after she herself has gone to bed for the night. She hears him rustling around his room frequently between 3-5 AM and at least one of those times it is down in the kitchen. She wakes him at 6AM for school with great difficulty, and his behavior at home has worsened in the last year.
At school, DeAndre receives special services for autism spectrum disorder, developmental delays, and attention-deficit disorder (the latter two thought to be related to his prenatal drug and alcohol exposure). He takes daily long-acting Methylphenidate and is otherwise healthy.
Expert Insights
BEARS Screening for Pediatric Insomnia
As part of the clinic’s routine protocols all patients are screened with a BEARS assessment tool. Open the categories below to review some of the history that was obtained from DeAndre and Simone.
Bedtime Problems
- DeAndre reports that he does not have a regular bedtime routine, and states “I go to bed when I feel like it”, and states that he has difficulty getting to sleep most nights.
- Simone endorses that he has video games in his room running most of the evening.
Expert Insight: (Why is this a concern? What may be commonly seen for this issue?
- Lack of a bedtime routine in teens may reflect bigger issues with lack of household organization and structure which challenge family’s ability to prioritize sleep.
- Common causes of insomnia in this age group are poor sleep hygiene, prolonged media exposure, and circadian shifts seen in adolescence. All of these may be compounded by his developmental differences.
- The divergence of supervised sleep and teenage independence may lead to difficulty obtaining an accurate history.
Excessive Daytime Sleepiness
Even though DeAndre is not falling asleep at school, he frequently will doze while in front of the TV after school.
Expert Insights
- A critical clue suggesting that DeAndre is sleepy is his difficulty with focus. Teenagers, like younger children, will still experience more difficulty with daytime focus and attention prior to overt sleepiness.
- Daytime sleepiness may be difficult to assess in those with co-morbid neurodevelopmental differences -- in this case his Autism Spectrum Disorder, PAE, and ADD.
Awakenings
- When asked, DeAndre states that he wakes frequently throughout the night, and Simone confirms this. Neither of them are able to state why he wakes up, but both endorse that DeAndre will wander the house and eat. DeAndre states that he eats because he is bored and doesn’t know what else to do.
- Specifically, DeAndre denies any leg pains or difficulty breathing when he wakes up.
Expert Insights
- Inexplicable awakenings may be due to normal physiologic awakenings, or caused by something pathologic like obstructive sleep apnea. This may be difficult to distinguish by history alone, particularly for unwitnessed sleep.
- Children with neurodevelopmental differences may have more difficulty establishing and maintaining sleep due to primary neurologic (dys)function associated with their underlying disorder.
Regularity & Duration
DeAndre and his mom are unable to quantify how much sleep he gets on a regular basis and both admit that he does not have regular sleep hours.
Expert Insights
- This lack of regularity likely reflects inadequate sleep opportunity and perhaps primary neurologic inability to sleep well.
- Insufficient sleep is most likely involved here as well, leading the the consequences and manifestations of chronic sleep deprivation. It is important to note that that those manifestations will look slightly different in each individual, particularly in those with developmental differences.
Sleep-Disordered Breathing / Snoring
- DeAndre denies snoring, difficulty breathing, or congestion at night.
- Simone does not believe that he snores.
Expert Insights
- Parental report of absence of snoring is not reliable when not habitually co-sleeping.
- Many of his daytime manifestations though may be associated with untreated OSA.
DeAndre's Evaluation & Diagnosis
What evaluation & diagnostic protocol should be used diagnose DeAndre?
Check all that apply:
The evaluation protocol strategies we recommend for DeAndre's case are:
- Determine child's sleep history
- Perform physical exam
- Complete a Sleep Diary
- Refer to a Specialist
Elements of DeAndre's Sleep History
| Sleep History | Case Specific Information | DeAndre's Evaluation Results |
|---|---|---|
What the child does at night? |
When DeAndre wakes up during the night, Simone is unaware of what exactly is he doing. Discussing this with DeAndre outside Simone’s presence, given that he is an adolescent, is beneficial to getting more detailed answers. |
DeAndre states, when his mother is outside the exam room, that he gets bored being awake at night, and will play video games or look at social media. |
Review timing of events at night (bedtime/wake time) |
What time would DeAndre go to sleep and wake up if without school/social obligations then next day, and if Simone did not have him on a schedule? (e.g., weekends) When he does wake at night time, are there usual times that these occur and how does it take him to fall back asleep? |
Simone states she suspects that he would go to bed at 3-4 AM and wake up at 1-2 PM if allowed. DeAndre agrees but states he knows that he should be going to be earlier. DeAndre states that he doesn’t sleep longer than 1-2 hour stretches before waking up. The time it takes him to fall back asleep vary greatly, between 5 minutes and 2 hours. He knows because he has a clock in his room and if more than a few minutes have passed by he will start playing video games because "well, I’m not going to be able to fall asleep anyway." |
Safety concerns |
Does Simone have concerns about DeAndre’s safety at night? |
They live in an apartment in a large complex on the 4th floor. The door to their apartment is locked at all times. Windows have locks on them. Simone states that DeAndre has not attempted to leave the apartment at night, and believes that he is fully awake and cognizant during these awakenings. DeAndre states that when he does wake in the middle of the night he remembers these events. |
Review of medications (antidepressants, seizure medications, and antihistamines all have impacts on sleep) |
Given DeAndre’s co-morbid conditions, what medications have been tried in the past for his sleep and behavior issues? |
DeAndre is currently on long acting methylphenidate but has been on a variety of medications for daytime behavior including Risperidone in the past. He was weaned off of this due to weight gain. For sleep, he has tried melatonin erratically in the past, and has also in the distant history been on clonidine. Simone does not believe that any sleep medications have been successful. She also does not believe that sleep has been impacted by daytime medications with the exception of Risperdal, which made him quite groggy. SImone is unaware what medications he was on as a younger child, but recalls being told that “no medicine helped” with his nighttime sleep or daytime behavior. |
Assess for family history of sleep disorders |
|
Unclear as he is adopted. |
Perform a Physical Exam
| Information to obtain includes: | Case Evaluation Results |
|---|---|
A physical exam should include height, weight, BMI, cardiovascular exam, HEENT, respiratory and neurological exam. |
DeAndre is anxious appearing, occasionally pacing the room. He has poor eye contact and is difficult to engage. He frequently looks to his mother for answers. His BMI is at the 85th% for age, which is improved from the past after having weaned off Risperidone. Oropharyngeal exam notable for a Mallampati score of 3, with poorly visualized tonsils though he does have some mouth breathing. Rest of exam was unremarkable. |
Sleep/Other Diary
| Information to obtain includes: | Case Evaluation Results |
|---|---|
For DeAndre, tracking timing of sleep onset, offset (wake time) and awakenings would help to establish patterns if present. This can be done manually via a sleep diary, with further consideration for actigraphy should manual entry be unreliable. |
DeAndre was unable to fill out the diary on his own. Simone helped, but because he was in his own room, she was still unaware of exact timing of awakenings. |
Refer to a Specialist
| Information to obtain includes: | Case Evaluation Results |
|---|---|
For DeAndre, evaluation by behaviorists and psychologists would be beneficial. Also, given duration of symptoms and lack of readily available or telling objective data, referral to a sleep specialist for actigraphy and more thorough evaluation may be beneficial. |
He was referred to a sleep specialist for actigraphy, which revealed very poor sleep efficiency with frequent arousals, and only about 5-6 hours of sleep on a given night. |
Options that are Not Recommended
Order Labs/Other Diagnostic Tests
There is no need to order other labs or diagnostic tests.
Refer to a Specialist
A referral to a specialist is not recommended in this case.
Red Flags
- When an accurate history is truly not available from the patient or parent, referral for objective testing may be necessary to help rule out any other comorbid sleep issues.
When evaluating a child for possible insomnia, consider how other health care providers may also need to be involved.
Expert Insights: Triggers for Insomnia
- Poor sleep hygiene will set up attempts at restorative sleep for failure.
- Persistent and prolonged light exposure, including from screen devices, will delay naturally occurring melatonin release, resulting in further delayed onset of sleep.
- Acquired anxiety of not being able to fall asleep when attempted will further increase arousal levels, leading to even less ability to establish restorative sleep.
- Those with comorbid neurodevelopmental differences require particular expertise in accounting for different response than typical to behavioral interventions and medication trials.
Evaluation & Diagnosis
What factors are contributing to DeAndre's insomnia?
Check all that apply:
- Poor sleep hygiene
- Insufficient sleep syndrome
- Insomnia due to a neurologic condition
- Delayed sleep phase syndrome
All of the above factors are contirubuing to DeAndre's insomnia.
DeAndre’s signs and symptoms are consistent with a predisposition to fragmented sleep due to his neurodevelopmental conditions, superimposed by poor sleep hygiene and resultant inadequate sleep time.
DeAndre's Treatment & Referrals
Now it’s time to recommend treatment options for DeAndre's insomnia.
Check all that apply:
The following treatment strategies are recommended for poor sleep hygiene, insufficient sleep syndrome, and delayed sleep phase syndrome:
- Optimize sleep hygiene
- Increase total sleep time
When to consult a sleep specialist or refer to another discipline:
- Once sleep hygiene and insufficient sleep have been adequately addressed, if delayed sleep phase still is present and/or awakenings continue to persist, then referral to a sleep specialist to further address underlying sleep disruption is appropriate.
Interdisciplinary Treatment Components
DeAndre's Results:
Good news! DeAndre and Simone decided to really try and prioritize DeAndre’s sleep health.
Treatment strategies include:
- Optimize sleep hygiene. First, Simone created a bedtime routine for DeAndre which included a list of tasks he needed to complete starting at the same time every night, which included taking a shower, brushing his teeth, and listening to some music. Simone created a small chair and desk in the living room where his computer and phone were stationed after 9PM. Although they tried to enforce a 2 hour media curfew prior to bedtime, this was quite difficult for Simone to enforce so they compromised on simply having media out of his bedroom after the bedtime routine started. She moved an inexpensive fan into his room each night to help provide white noise. She tried to have him wake up at about the same time each morning.
- Increase total sleep time. Once DeAndre did not have media in his room when he woke at night, he played many fewer video games and not surprisingly ended up falling back asleep after arousals much quicker. Simone was much more aggressive about having him stay in his room and not go to the kitchen to eat. She hung a bell on his doorknob and when he would open his door, she would hear it and call out to him to stay in his room which he would do. However, he continued to have several arousals per night of unclear etiology.
- DeAndre’s delayed sleep phase improved significantly with sleep hygiene and increased sleep time measures. This was no longer felt to be his primary problem after the above measures were taken.
Despite DeAndre’s marked improvement in sleep routine and sleep hours, he still was waking frequently at night time for unclear reasons, and still tired during the day with difficulty focusing on school work. Simone noted that he was not as “crabby” but still tired.
- At this point, referral to a sleep specialist should be considered to evaluate further for primary sleep disorders, such as sleep fragmentation related to his underlying comorbidities, or consideration for a trial of medications under careful supervision.