Solve Your Child’s Sleep Problems Solve Your Child’s Sleep Problems

Autism Cymru 3rd International Conference Caerdydd; April 2008Dr David Bramble MD

Consultant Child & Adolescent Learning Disability Psychiatrist

Telford & Wrekin Primary Care Trust

DisclaimerDisclaimer

““The advice provided by Dr Bramble today The advice provided by Dr Bramble today is underpinned by research findings and is underpinned by research findings and peer-evaluated practices; however, he peer-evaluated practices; however, he cannot take responsibility for parents or cannot take responsibility for parents or carers who wish to implement any of his carers who wish to implement any of his advice or suggestions provided in this advice or suggestions provided in this talk. Should parents wish to use this talk. Should parents wish to use this information they do so at their own risk.”information they do so at their own risk.”

What about your sleep?What about your sleep?1. What time do you usually get to sleep?1. What time do you usually get to sleep?

2. Do you wake during the night?2. Do you wake during the night?(a) How many times? (a) How many times? (b) For how long each time usually?(b) For how long each time usually?

3. What time do you normally get up?3. What time do you normally get up?

4. Usually, how many hours 4. Usually, how many hours undisturbedundisturbed sleep sleep do you do you get?get?

5. Do you feel refreshed in the mornings?5. Do you feel refreshed in the mornings?

6. Do you regularly feel sleepy in the day?6. Do you regularly feel sleepy in the day?

7. Have you fallen asleep during the day?7. Have you fallen asleep during the day?

8. Do you feel tense most of the day?8. Do you feel tense most of the day?

9. Do you often feel depressed?9. Do you often feel depressed?

10. Rate your overall sleep quality (0 = “very 10. Rate your overall sleep quality (0 = “very bad” to bad” to 10=”very good”): ____/1010=”very good”): ____/10

Children’s Sleep Disorders: Children’s Sleep Disorders: BACKGROUND (1)BACKGROUND (1)

● ● Children’s sleep problems common Children’s sleep problems common but poorly but poorly recognised recognised

((Stores, 1990Stores, 1990)) Most health workers receive no Most health workers receive no specific specific training in sleep medicinetraining in sleep medicine

((British Sleep Society,’97) British Sleep Society,’97) Over-reliance on old fashioned Over-reliance on old fashioned sedatives sedatives (“Vallergan”, etc.)(“Vallergan”, etc.) No evidence of efficacy in long term No evidence of efficacy in long term ((Ramchandani et al., 2000Ramchandani et al., 2000) )

Children’s Sleep Disorders: Children’s Sleep Disorders:

BACKGROUND (2)BACKGROUND (2)

Strongly associated with Strongly associated with daytime daytime behavioural problemsbehavioural problems for children and for children and high high levels of stress for parentslevels of stress for parents

Most common forms Most common forms preventablepreventable: most : most children physiologically capable of children physiologically capable of

sleeping sleeping through night from 3-6 months through night from 3-6 months of ageof age

Minority of sleep-disordered children Minority of sleep-disordered children become chronically insomniac adultsbecome chronically insomniac adults

Sleep Problems in Autism: the MythsSleep Problems in Autism: the Myths

1.1. Are not seriousAre not serious

2.2. Are inevitableAre inevitable

3.3. Are short-livedAre short-lived

4.4. Cannot be treatedCannot be treated

What are we talking about?What are we talking about?

• • Difficulty settling (falling asleep)Difficulty settling (falling asleep)

• • Staying asleep (& waking at wrong Staying asleep (& waking at wrong

times) times)

• • Strange behaviours in & around Strange behaviours in & around primary primary sleep period (eg. sleep period (eg. sleepwalking)sleepwalking)

• • Sleepy by daySleepy by day

• • Effects upon family and caregiversEffects upon family and caregivers

What are we talking about What are we talking about (really)?(really)?

"...what happens when a child doesn't sleep? "...what happens when a child doesn't sleep? When night after night, year after year, a child When night after night, year after year, a child wakes, cries and demands attention? That's wakes, cries and demands attention? That's when exhaustion takes over and life becomes a when exhaustion takes over and life becomes a grey limbo, all thoughts of the future grey limbo, all thoughts of the future forgotten, our only concern to survive another forgotten, our only concern to survive another day. It erodes the fabric of life, causing day. It erodes the fabric of life, causing depression and resentment both of which are depression and resentment both of which are closely followed by overwhelming guilt, closely followed by overwhelming guilt, especially when the child is so disabled. Most especially when the child is so disabled. Most parents who suffer this type of long- term sleep parents who suffer this type of long- term sleep deprivation must do so in silence, their deprivation must do so in silence, their optimism replaced by resignation"optimism replaced by resignation"..

--- mother of a 12 year-old autistic boy (1990)--- mother of a 12 year-old autistic boy (1990)

Why Treat a Sleep Problem?Why Treat a Sleep Problem?

• Everyone benefits from a good night’s sleepEveryone benefits from a good night’s sleep

• Promotes independence and fear resiliencePromotes independence and fear resilience

• Improves daytime thinking, feeling and Improves daytime thinking, feeling and

behaviourbehaviour

• Prevents a chronic problem developingPrevents a chronic problem developing

• Prevents other problemsPrevents other problems

• Helps people to make the most of their potentialHelps people to make the most of their potential

• Keeps families happyKeeps families happy

• Prevents accidents Prevents accidents

Children’s Sleep Disorders: Children’s Sleep Disorders: Prevalence RatesPrevalence Rates

20% of pre-school children (Richman, 1977)

10% of school age children

40-50% of children with severe learning disabilities (Pahl & Quine, 1984)

Up to 2/3 of ASD children and adolescents

(Hoshino,1984)

75% of children with profound learning disabilities

(Hogg & Lambe, 1988)

25% of adults (ASDA, 1990)

Most parents of ASD/SLD children have sleep problems

Children’s Sleep Disorders:Children’s Sleep Disorders:(1) COMMONEST TYPES(1) COMMONEST TYPES

Pre-School:- “colic”, night settling, night waking and early waking; rhythmic movement disorders; bruxism.

Early School Years: -nocturnal enuresis, fear of dark; night-terrors; sleepwalking; nightmares; night-settling problems

Teenage Years: -adult-type insomnias, delayed sleep phase disorder, poor sleep hygiene.

Children’s Sleep Disorders:Children’s Sleep Disorders:(2) SOME RARER TYPES(2) SOME RARER TYPES

Obstructive Sleep Apnoea (large tonsils, Down Syndrome, storage diseases, pathological obesity).

Narcolepsy: catalepsy, cataplexy, hypogogic hallucinations (genetically determined)

Nocturnal forms of epilepsies: frontal seizures

Why do Autistic People Have High Rates of Sleep Problems?

1. Part of challenging/difficult behaviours in majority of children, ie. extrinsic factors

2. Due to factor(s) linked to the disorder, ie. intrinsic factors

3. A combination of last 2 factors (intrinsic & extrinsic factors )

The Vicious Cycle of Sleep ProblemsChildren who do not

get adequate sleep

Day time behavioural problems

Improved sleep better behaviour by day

However:Better daytime behaviour improved sleep (normally)

1.Intrinsic Factors (1)

(i) High Anxiety/Arousal

opposite to what promotes sleep

(ii) Bedtime Routines & Rituals (and Repetitive Movements)

severe or inappropriate ones can affect sleep onset and maintenance

(iii) Sensory Abnormalities

oversensitivity to sound or touch: uncomfortable bedroom and bedclothes

1.Intrinsic Factors (2)

(iv) Social & Communication Difficulties

social cues for sleep onset ignored

(v) Melatonin

abnormalities of tryptophan metabolism?

abnormalities of melatonin secretion?(vi) “Sleep Architecture”

no consistent differences compared to controls

effects of epilepsy and its treatment

Extrinsic Factors: MedicationExtrinsic Factors: Medication

SedativesSedatives (“Vallergan”, “Phenergan”) (“Vallergan”, “Phenergan”)

-daytime sedation -daytime sedation

-paradoxical excitement-paradoxical excitement

AnticonvulsantsAnticonvulsants (“Tegretol”, “Epilim”, lamotrigine) (“Tegretol”, “Epilim”, lamotrigine)

-all may produce daytime sedation and affect -all may produce daytime sedation and affect sleep sleep architecturearchitecture

Others:Others:

thyroxine - stimulates in higher dosesthyroxine - stimulates in higher doses

b-blockers - nightmaresb-blockers - nightmares

diuretics - bedwettingdiuretics - bedwetting

salbutmol inhaler - stimulatessalbutmol inhaler - stimulates

Children’s Sleep Disorders: Children’s Sleep Disorders: AssessmentAssessment

1.1. General assessment inc. physical General assessment inc. physical examexam

2.2. Mental State (Mental State (anxious, depressed, anxious, depressed, etcetc?)?)

3.3. Sleep historySleep history + diary data + diary data

4.4. Sleep habits of family (sleep Sleep habits of family (sleep hygiene)hygiene)

5.5. Sleep environment (inc. type of Sleep environment (inc. type of bed)bed)

6.6. Special investigationsSpecial investigationsEg: Eg: Polysomnography for OSA and nocturnal Polysomnography for OSA and nocturnal epilepsies, genetic tests for narcolepsy, epilepsies, genetic tests for narcolepsy, overnight videotaping for parasomniasovernight videotaping for parasomnias

““There never was a child more deeply loved than when he There never was a child more deeply loved than when he was asleep” was asleep” (R.W.Emerson)(R.W.Emerson)

TREATMENT: TREATMENT:

1.1. Behavioural ModificationBehavioural Modification

•Many research studies support this general approach(Richman et al. 1985)• Works for LD children (Quine & Wade, 1991)

•Few studies directly involving ASD children

•Involves: use of “sleep diaries”, extinction, cueing, sleep hygiene, rewards• Efficacy: 75% plus!•Parents/carers: implement therapy •Treatment of choice for most childhood sleep problems (especially night settling and night waking problems)

Sleep Diary : A Practical Record for Parents

Name/Age: Week commencing:

Monday Tuesday Wednesday Thursday Friday Saturday Sunday

Time woke in morning

Mood on waking

Time of nap(s) in day

Time went to bed in evening

Time went to sleep in evening

Time(s) woke in night

What you did?

Time(s) went to sleep again

Time you went to bed

TREATMENT (contd.)TREATMENT (contd.)

2.2. MedicationMedication Stimulants and anti-depressants for Stimulants and anti-depressants for

narcolepsynarcolepsy

Sedative hypnotics for short-term Sedative hypnotics for short-term insomnias of adolescents insomnias of adolescents

(NB:(NB: sedatives are contra-indicated in infantssedatives are contra-indicated in infants)) MelatoninMelatonin in in severe, refactorysevere, refactory cases cases

3.3. SurgerySurgery Adeno-tonsilectomy for OSAAdeno-tonsilectomy for OSA

Dr Bramble’s Dr Bramble’s

“Ten Steps to a Quiet Night”“Ten Steps to a Quiet Night”1. Make bedroom safe, secure and unstimulating.

2. Set regular bedtime and waking time and stick to it.

3. Avoid stimulating activities (rough play, loud music, TV) in the hour before bedtime.

4. Pre-bedtime settling routine (use symbols and other aids).

5. Rapid settling in bedroom (less than four minutes); use your “magic phrase”; leave bedroom; lights off; door closed.

6. Ignore thereafter (unless physically unwell). Put back without fuss if he/she gets up during the night.

7. Don’t give in - you will only train your child to get worse if you do!

8. Praise and cuddles (if tolerated) once awake in the morning following a good night

9. Initial worsening of the problem means it is working

10. Stick to this and your child (children) will learn not to disturb you during the night.

““Ten Steps to a Quiet Night”Ten Steps to a Quiet Night”

CAVEATS:CAVEATS:

1.1. Chose a good time (ie. no holidays or special events Chose a good time (ie. no holidays or special events pending)pending)

2.2. Child and parents must be in optimal healthChild and parents must be in optimal health

3.3. Move bedroom furniture around or change Move bedroom furniture around or change bedroomsbedrooms

4.4. Support and encourage other childrenSupport and encourage other children

5.5. Discuss progress with a friend, Health visitor &/or Discuss progress with a friend, Health visitor &/or teacherteacher

6.6. Warn the neighbours of risk temporary disruptionWarn the neighbours of risk temporary disruption

7.7. If possible, brief child thoroughly before and If possible, brief child thoroughly before and throughout treatment throughout treatment

8.8. Wavering parents need to back one another upWavering parents need to back one another up

9.9. If illness suspected pause until physically well If illness suspected pause until physically well againagain

10.10.Persist and it stands a good chance of working in:Persist and it stands a good chance of working in:

3 to 4 nights!3 to 4 nights!

Graded WithdrawalGraded Withdrawal(For children who insist on parent’s presence at night)(For children who insist on parent’s presence at night)

1.1. Place mattress on floor next to bed and switch Place mattress on floor next to bed and switch

bedroom light offbedroom light off

2.2. Lie next to child on bed for 3 nightsLie next to child on bed for 3 nights

3.3. Lie on mattress next to bed for 3 nightsLie on mattress next to bed for 3 nights

4.4. Move mattress by two feet closer to door every 3 Move mattress by two feet closer to door every 3 nightsnights

5.5. When at the door sit on a chair in the bedroom with When at the door sit on a chair in the bedroom with door open for 3 nightsdoor open for 3 nights

6. 6. Sit on a chair outside the bedroom but visible to Sit on a chair outside the bedroom but visible to child with door open for 3 nightschild with door open for 3 nights

7.7. Sit on a chair outside the bedroom not visible to Sit on a chair outside the bedroom not visible to child with door open for 3 nightschild with door open for 3 nights

8.8. Sit on a chair outside the bedroom with door Sit on a chair outside the bedroom with door closed for 3 nightsclosed for 3 nights

NB: If child tries to join you, return to bed with no NB: If child tries to join you, return to bed with no fuss, no eye contactfuss, no eye contact

Controlled CryingControlled Crying(For children who wake and cry but (For children who wake and cry but parent parent cannot cannot

ignore)ignore)

1. Discover whether there is anything worrying 1. Discover whether there is anything worrying him/herhim/her

2.2. Establish how much crying and distress you can Establish how much crying and distress you can tolerate (eg. 10 mins).tolerate (eg. 10 mins).

3.3. When child awakes and cries, wait 10 mins and go When child awakes and cries, wait 10 mins and go in. in.

4.4. Instruct to return to bed (if necessary) in emphatic Instruct to return to bed (if necessary) in emphatic manner manner

5.5. No cuddles, food eye contact, etc.)No cuddles, food eye contact, etc.)

6.6. Reassure simply and leave after 15 secs Reassure simply and leave after 15 secs

7.7. Wait for 10 mins and repeat (if necessary)Wait for 10 mins and repeat (if necessary)

8.8. Extend by a set number of minutes on subsequent Extend by a set number of minutes on subsequent nights.nights.

Scheduled AwakeningScheduled Awakening(Another way of addressing (Another way of addressing night wakingnight waking problems) problems)

1. Discover from sleep diary data when 1. Discover from sleep diary data when exactlyexactly your child habitually first wakes up during the your child habitually first wakes up during the nightnight

2.2. Set your alarm clock (or stay up!) for 30 mins Set your alarm clock (or stay up!) for 30 mins

before this timebefore this time

3.3. Wake your child up by gently touching him; Wake your child up by gently touching him;

when he opens his eyes let him fall back to when he opens his eyes let him fall back to

sleepsleep

4.4. If your child does not fall back to sleep, try 45 If your child does not fall back to sleep, try 45

mins the following night and, by trial and error, mins the following night and, by trial and error,

you will find the best time to wake and fall back you will find the best time to wake and fall back

to sleep quickly.to sleep quickly.

Restricting SleepRestricting Sleep(Another way of ensuring that a child is sleepy at (Another way of ensuring that a child is sleepy at

bedtime*) bedtime*) 1. Discover from sleep diary data how much sleep 1. Discover from sleep diary data how much sleep

he/she is having each night (av. per night in he/she is having each night (av. per night in hours)hours)

2.2. Calculate 90% of this and make this the new Calculate 90% of this and make this the new sleeping time (delay bedtime &/or waking time)sleeping time (delay bedtime &/or waking time)

3.3. If lying awake quietly occupy in another room If lying awake quietly occupy in another room until sleepy and return to beduntil sleepy and return to bed

4.4. Avoid naps during the day and oversleeping at Avoid naps during the day and oversleeping at weekendsweekends

5.5. Never restrict below 5 hoursNever restrict below 5 hours6.6. After a week move settling/waking time by 15 After a week move settling/waking time by 15

minsmins7.7. Continue until desired pattern is acquiredContinue until desired pattern is acquired*as long as he/she isn’t sleepy by day*as long as he/she isn’t sleepy by day

Melatonin Melatonin (1)

• Growing use in UK practice

• Most generic C&A specialists now prescribe

• Increasing evidence base for use with learning disabled, ASD and visually impaired

• Established treatment of “jet lag”

• Safe agent? (Probably)• Overall efficacy c. 75% (Smits et al. ‘01; Ross et al. ‘02)

• Problems with prescription and supplies

• GPs unfamiliar with or wary of agent

Melatonin (2)Melatonin (2)Natural Sources1. Exposure to sunlight in mornings2. Foods that contain melatonin: oats, sweetcorn, rice, ginger, tomatoes, barley.3. Foods containing tryptophan: cottage cheese, instant breakfast cereals, poultry, milk, nuts (esp. almonds & peanuts)4. Vitamins (B6, nicotinamide) and minerals (calcium & magnesium): these promote melatonin production

Avoid Melatonin Depleting Agents1. Caffeine (coffee, tea, cola drinks, chocolate)2. Drugs: aspirin, steroids3. Strong electromagnetic fields: TVs, clocks, baby monitors, electric blankets within 1.5 metres (~4 feet) of bed

Melatonin (3)Melatonin (3)• Use only for refractory cases or for crises

• Discussion of its unlicensed status and safety profile

• Start at 2 to 5mg nocte (immediate-release formulation), and may be increased up to 12 to 15mg nocte

• Regular monitoring of response (by phone)

• Slow- or controlled-release preparations and alternate-night, PRN or tapering doses can be used

• Trial withdrawal for a night or so in order to test ongoing need.

• Some patients may require long-term treatment (growth and other developmental parameters should be measured)

• Patient information leaflets, treatment advice summaries and blank sleep diary sheets should be provided.

• Melatonin therapy should be under specialist review but care may also be shared with GPs

Miscellaneous Other TechniquesMiscellaneous Other Techniques• “Social stories”, “PECS” or other symbolic

communication system

• Bedroom door “modifications”

• Spy holes or CCTV

• Lock up other rooms, cupboards and ‘fridges

• Sleep suits

• Sleep systems (“Safe Space”)

If all else fails:If all else fails:1. Stop, have a break, and try again

2. Reflect upon how and, possible, why the treatment didn’t work

3. Respite care (for LD children)

4. Major tranquiliser drugs (short-term only)

5. Request a second opinion

6. Refer to Sleep Disorder Centre

Prevaricating PennyPrevaricating PennyPenny is five years-old and attends mainstream Penny is five years-old and attends mainstream school. At her home, every evening she has to watch school. At her home, every evening she has to watch her favourite “Thomas” video three times (~4 hours) her favourite “Thomas” video three times (~4 hours) before falling asleep on the settee in front of the TV. before falling asleep on the settee in front of the TV. Her father carries her upstairs at 11pm, gently Her father carries her upstairs at 11pm, gently dresses her in her “Thomas” pyjamas (specially dresses her in her “Thomas” pyjamas (specially warmed up by her mother), puts her favourite warmed up by her mother), puts her favourite “Thomas” tape, reads her favourite “Thomas” book “Thomas” tape, reads her favourite “Thomas” book to her on and then lies with her until she is asleep to her on and then lies with her until she is asleep again (< 60 mins). Usually, she sleeps through again (< 60 mins). Usually, she sleeps through (usually) until 6 am when she gets up and watches (usually) until 6 am when she gets up and watches her video again (once). Should anything interrupt her video again (once). Should anything interrupt this routine she will become extremely upset, scream this routine she will become extremely upset, scream and lash out at her family. She manages to settle to and lash out at her family. She manages to settle to sleep at her grandparents’ house by herself and sleep at her grandparents’ house by herself and without “Thomas’s” help! His teachers have without “Thomas’s” help! His teachers have commented upon her particularly difficult behaviour commented upon her particularly difficult behaviour in the afternoons. in the afternoons.

Q1. What’s the sleep problem?Q1. What’s the sleep problem?

Q2. Who’s affected?Q2. Who’s affected?

Q3. How would you help Penny?Q3. How would you help Penny?

References

Specific advice for parents:Specific advice for parents:

1.1. Confederation of Service Providers for People Confederation of Service Providers for People with Autism. (2002) Learning to sleep. In: “with Autism. (2002) Learning to sleep. In: “Living Living with autism – learning to managewith autism – learning to manage”. CoSPPA ”. CoSPPA (tel/fax: 01569 763309)(tel/fax: 01569 763309)

2.2. Dr. John Pearce (2000) Dr. John Pearce (2000) “The new baby and “The new baby and toddler sleep programme”toddler sleep programme”. Vermillon. Vermillon

Children’s Sleep DisordersChildren’s Sleep Disorders

SLEEP

AWAKEAWAKE