1. Stade 2008 www.faseout.ca1 Fetal Alcohol Spectrum Disorder: Assessment & Strategies

2. Stade 2008 www.faseout.ca2 Outline Introduction Early Identification and Assessment –Diagnostic guidelines and assessment –Screening –Rational for early diagnosis Cognitive, Behavioral, Social Development and Nutrition of Children, Birth to Age 6 years –Issues and Strategies –Focus on Families

3. Stade 2008 www.faseout.ca3 Introduction In Canada the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 in 100 live births.

4. Stade 2008 www.faseout.ca4 Introduction Caused by prenatal exposure to alcohol. FASD is the leading cause of developmental and cognitive disabilities among Canadian children.

5. Stade 2008 www.faseout.ca5 Introduction: Fetal Alcohol Spectrum Disorder Defined Growth Restriction Facial Anomalies CNS Dysfunction Prenatal Alcohol Exposure

6. Stade 2008 www.faseout.ca6 Introduction Cost of FASD annually to Canada of those 1 to 21 years old, was $344,208,000 (95% CI $311,664,000; $376,752,000). (Stade, 2004).

7. Stade 2008 www.faseout.ca7 Introduction: Etiology Alcohol readily crosses the placenta and results in similar levels in the mother and fetus Rate of elimination is slower in the fetus Most teratogenic effect during organogenesis and development of the nervous system

8. Stade 2008 www.faseout.ca8 Etiology When neuronal activity is abnormally suppressed during the developmental period, the timing and sequence of synaptic connections is disrupted, and this causes nerve cells to receive an internal signal to commit suicide, a form of cell death known as "apoptosis". Addiction Biology 2004 Jun;9(2):137-49.

9. Stade 2008 www.faseout.ca9 Etiology Teratogenesis is grossly dose related, although the threshold dose is still unknown and related to maternal/fetal susceptibility. Risk to fetus greatest with more than 7 standard drinks per week (1 standard drink = 13.6 grams of absolute alcohol). Binge drinking of more than 5 ounces (142 grams) per occasion vs. 4 or more drinks per occasion.

10. Stade 2008 www.faseout.ca10 Standard drinks = 0.5 oz alcohol 12 oz (341 mL) can of beer (5% alcohol) 12 oz (341 mL) bottle of cooler (5% alcohol) 5 oz (142 mL) glass of wine (12% alcohol) 1.5 oz (43 mL) distilled spirits (40% alcohol) 3 oz (85 mL) fortified wine e.g. sherry or port (18% alcohol )

11. Stade 2008 www.faseout.ca11 Etiology No safe time to drink during pregnancy No known safe amount

12. Stade 2008 www.faseout.ca12 Risk Factors Maternal Age and Parity Chronicity of Alcoholism Socioeconomic Status Polydrug Use Ethnicity Fetal Susceptibility

13. Stade 2008 www.faseout.ca13 Diagnostic Guidelines

14. Stade 2008 www.faseout.ca14 Important Features of Diagnostic Guidelines Minimize false negatives and false positives Precisely define diagnostic criteria Consider genetic and family histories Multidisciplinary approach

15. Stade 2008 www.faseout.ca15 Rational for Early Diagnosis Accurate and timely diagnosis is essential: –to improve outcomes –decrease risk of secondary disabilities –increase opportunities for prevention –ensure more accurate estimates of incidence and prevalence

16. Stade 2008 www.faseout.ca16 Canadian Guidelines for Diagnosis CMAJ, March 2005 The Diagnostic Process –Screening and referral –Physical exam and differential diagnosis –Neurobehavioural assessment –Treatment and follow-up Team members –Program director/Co-ordinator –Physician (trained in diagnosis) –Psychologist –Social worker –OT, Speech, psychiatrist, geneticist, addiction worker, community support workers, teachers etc.

17. Stade 2008 www.faseout.ca17 Canadian Guidelines for Diagnosis Physical Exam General physical to rule out other disorders Growth (at or below 10 th percentile) Facial features

18. Stade 2008 www.faseout.ca18 Growth Restriction Growth restriction is demonstrated by height and weight at or below the tenth (10th) percentile Growth restriction may be apparent prenatally and/or postnatally

19. Stade 2008 www.faseout.ca19 Facial Features Short palpebral fissures Smooth or flat philtrum Thin upper lip

20. Stade 2008 www.faseout.ca20 Facial Features

21. Stade 2008 www.faseout.ca21 Associated Anomalies Cardiac anomalies Joint and limb anomalies Neurotubal defects Anomalies of the urogenital system Hearing disorders Visual problems Severe dental malocclusions

22. Stade 2008 www.faseout.ca22 Canadian Guidelines for Diagnosis -Neuro-behavioural Assessment Domains to be assessed by psychologist or team: Hard and soft neurological signs Brain structure Cognition (IQ) Communication Academic achievement Memory Executive functioning Attention deficit/hyperactivity Adaptive behaviour, social skills, social communication

23. Stade 2008 www.faseout.ca23 Early Infancy Tremors Poor suck Hypotonic/Hypertonic Irritability Feeding problems Developmental delay

24. Stade 2008 www.faseout.ca24 Early Childhood Cognitive Problems Motor Issues Behavioral Presentation Sensory Dysfunction Speech Delay Hyperactivity Socialization Difficulties

25. Stade 2008 www.faseout.ca25 Canadian Guidelines for Diagnosis Maternal Alcohol History in Pregnancy Key to establishing an accurate diagnosis Require confirmation based on clinical records, self-report, reliable observation

26. Stade 2008 www.faseout.ca26 Classification of FASD Fetal Alcohol Syndrome (FAS) Partial Fetal Alcohol Syndrome (PFAS) with confirmed maternal alcohol exposure Alcohol-Related Neuro-Developmental Disorder (ARND) with confirmed maternal alcohol exposure

27. Stade 2008 www.faseout.ca27 Diagnostic Criteria FAS Evidence of growth impairment 3 facial anomalies 3 central nervous system domains impaired Confirmed or unconfirmed alcohol exposure

28. Stade 2008 www.faseout.ca28 Diagnostic Criteria Partial FAS 2 facial anomalies 3 central nervous system domains impaired Confirmed alcohol exposure.

29. Stade 2008 www.faseout.ca29 Diagnostic Criteria ARND 3 central nervous system domains impaired Confirmed alcohol exposure.

30. Stade 2008 www.faseout.ca30 Screening

31. Stade 2008 www.faseout.ca31 Screening and Primary Care Referral Referral of individuals to FASD diagnostic clinics: Evidence of prenatal exposure to alcohol (or probable) with suspected or confirmed CNS dysfunction or Presence of 3 characteristic facial features with growth deficits with or without known prenatal alcohol exposure.

32. Stade 2008 www.faseout.ca32 Conclusion Diagnosis requires a multi-disciplinary approach Diagnosis is complex and guidelines are well defined and cannot be a gestalt approach Confirmed prenatal alcohol exposure is required for a diagnosis of Partial FAS and ARND Screening does not equate to diagnosis.

33. Stade 2008 www.faseout.ca33 Cognitive, Behavioral, Social Development and Nutrition of Children from Birth to Age 6

34. Stade 2008 www.faseout.ca34 Cognitive

35. Stade 2008 www.faseout.ca35 Cognition Attention problems and memory deficits often make learning difficult in the young child.

36. Stade 2008 www.faseout.ca36 Cognition Infants and young children with FASD live with differing levels of cognitive abilities All programs to develop cognitive abilities should be child specific.

37. Stade 2008 www.faseout.ca37 Cognition How does the individual child with FASD learn? Some are primarily visual learners, some are tactile learners, some kinesthetic, and some learn best by listening. (Mountford,A. The Golden Hoop of Life).

38. Stade 2008 www.faseout.ca38 Cognition: Strategies If a child learns best through music … If a child learns through body movement … If a child learns best through listening … If a child is a tactile learner … (Mountford, A. The Golden Hoop of Life).

39. Stade 2008 www.faseout.ca39 Cognition: Strategies May need to use short sentences Break down information and instruction Repetition, Repetition, Repetition Teach one concept at a time.

40. Stade 2008 www.faseout.ca40 Cognition: Strategies “ It took him four weeks at age four to learn the colour red. We decided in February he was going to learn his colours. So everyday of the month I dressed him in red. The teacher had to say ‘X you’re wearing a red shirt today. Show me your shirt. It’s red’. ‘X you’re wearing red pants today’. Something had to be red”.

41. Stade 2008 www.faseout.ca41 Cognition: Strategies Treasure hunts Problem-solving activities Visual-spatial games Story building Math skills: visual teaching

42. Stade 2008 www.faseout.ca42 Cognition Impacting on the development of cognitive skills is the child’s ability to process their sensory world.

43. Stade 2008 www.faseout.ca43 Sensitivity

44. Stade 2008 www.faseout.ca44 Sensory Processing Many infants and young children with FASD have difficulty processing and organizing sensory information they receive from their own bodies and the outside world.

45. Stade 2008 www.faseout.ca45 Sensory Processing Sensory processing is a developmental process Takes place in the central nervous system Involves ability to take in information through the senses, organize it in our brains and use it to respond appropriately

46. Stade 2008 www.faseout.ca46 Sensory Processing The brain must properly process information from the senses to develop: –concentration –organization –learning ability –specialization of each side of the body and brain –self-esteem –self-control

47. Stade 2008 www.faseout.ca47 Sensory Processing How does sensory processing abilities impact on day-to-day life of a child with FASD?

48. Stade 2008 www.faseout.ca48 Normal Sensory Integration Schwab, D. (2001).

49. Stade 2008 www.faseout.ca49 Sensory Processing Hypersensitive –Touch (Touch Processing) –Noise (Auditory Processing –Visual Input (Visual Processing). Dysfunction in Behavioural Outcomes of Sensory Processing.

50. Stade 2008 www.faseout.ca50 Sensory Processing Strategies Place your child first or last in line Wash clothes a couple of times before wearing Use soft bedding Remove tags from clothes Avoid: –ties under the chin –thick seams in clothing –clothes that are scratchy Avoid tickling

51. Stade 2008 www.faseout.ca51 Sensory Processing Strategies Weighted Vests Deep Massage Bear Hugs Activities using a number of muscles groups

52. Stade 2008 www.faseout.ca52 Sensory Processing Strategies Tone down the room’s effects on all senses Avoid decorated rooms Walls should be single colour and very pale Avoid clutter

53. Stade 2008 www.faseout.ca53 Sensory Processing Strategies Provide a place/space where the child can have a “quiet place” to be Avoid crowds and places with many people, lots of noise and high activity level At daycare, preschool, and school group activity should avoid large groups

54. Stade 2008 www.faseout.ca54 Sensory Processing Strategies Group play – use little mats Recognize why a child may refuse to participate in a game Occupational Therapy

55. Stade 2008 www.faseout.ca55 Sensory Processing Hyposensitive –Pain –Hot or Cold

56. Stade 2008 www.faseout.ca56 Strategies: Hyposensitive Supervision Avoid overdressing in summer Ensure dressed adequately in winter Ensure child monitored and receives adequate care when ill

57. Stade 2008 www.faseout.ca57 Behaviours Behavioural and Emotional Responses may reflect the child’s outcomes of sensory processing.

58. Stade 2008 www.faseout.ca58 Behaviour: Hyperactivity Due to the child’s sensory processing difficulties he or she may have a constant need for activity.

59. Stade 2008 www.faseout.ca59 Strategies Fidget Items Short periods of sitting still Hammock Teaching during activity Music

60. Stade 2008 www.faseout.ca60 Difficult Behaviours What is needed is a change in thinking from discipline to redirection or re-teaching Prevention – sensory strategies, transitioning

61. Stade 2008 www.faseout.ca61 Strategies Be firm but supportive Choose one or two critical behaviors at a time to work on Ignore minor negative behaviour Keep the mood positive. Give five times more praise to every one correction. Identify warning signs re: “melt down” Teach child to self-monitor

62. Stade 2008 www.faseout.ca62 Difficult Behaviours Calming strategies: –Comfort corner –Tents and caves –Very short time outs –Deep pressure

63. Stade 2008 www.faseout.ca63 Crying: Infancy Crying is an infant’s way of expressing his/her needs Infants prenatally exposed to alcohol may seem like they are crying constantly

64. Stade 2008 www.faseout.ca64 Crying: Infancy Avoid, if you can, letting a baby get to a state of frantic crying Get to know strategies that work best, and tell other caregivers how the baby likes to be handled.

65. Stade 2008 www.faseout.ca65 Crying: Infancy Wrap the infant snugly in a receiving blanket – when not sleeping Use a soother Bathing may settle some, quiet music may help others Rocking the infant up and down rather than back and forth has been found to be soothing for some infants.

66. Stade 2008 www.faseout.ca66 Crying: Young Child Crying is a method of communication for all young children In the child with FASD be alert for: sensory overload inability to communicate mood problems

67. Stade 2008 www.faseout.ca67 Crying: Young Child Modify environment Ensure child can communicate needs – pictures, sign language Assessment by a mental health professional

68. Stade 2008 www.faseout.ca68 Health & Illness

69. Stade 2008 www.faseout.ca69 Health and Illness Generally, FASD is not defined by associated physical disability or illness.

70. Stade 2008 www.faseout.ca70 Health & Illness Some children with FASD are born with organ anomalies.

71. Stade 2008 www.faseout.ca71 Organ Anomalies Cardiac anomalies Joint and limb anomalies Neurotubal defects Anomalies of the urogenital system. Hearing disorders Visual problems Severe dental malocclusions

72. Stade 2008 www.faseout.ca72 Health & Illness Zhang and others (2005) demonstrate the adverse effects of alcohol on immune competence and the increased vulnerability of ethanol-exposed offspring.

73. Stade 2008 www.faseout.ca73 Health & Illness The infant should not be exposed to environmental irritants such as tobacco smoke Protect the infant from exposure to viruses.

74. Stade 2008 www.faseout.ca74 Health & Illness Young children with FASD are particularly prone to upper respiratory illnesses and ear infections Monitoring and ensure treatment as necessary

75. Stade 2008 www.faseout.ca75 Health & Illness Motor deficits are not uncommon in infants and young children with FASD –Infant & Pre-school stimulation programs –Occupational Therapy

76. Stade 2008 www.faseout.ca76 Sleep

77. Stade 2008 www.faseout.ca77 Sleep Disturbances Sleep disturbances among individuals with FASD are not uncommon Younger children often have trouble falling asleep and waking

78. Stade 2008 www.faseout.ca78 Sleep Disturbances They may have trouble settling and wake often throughout the night Night terrors among individuals with FASD can continue throughout life

79. Stade 2008 www.faseout.ca79 Sleep Strategies Establish rituals for saying good night Start a calming bedtime routine an hour before bedtime A light snack before bed may be beneficial for some children

80. Stade 2008 www.faseout.ca80 Sleep Strategies Decrease sensory stimulation in the bedroom White noise when the child is in bed may be calming to some but distracting to others Night-lights help some young children but for some can lead to night terrors

81. Stade 2008 www.faseout.ca81 Sleep Strategies Start young to promote the child sleeping in his or her own bed Melatonin may be beneficial Childproof the house for night wanderers As much as possible wake the child in the same predictable way every morning

82. Stade 2008 www.faseout.ca82 Nutrition

83. Stade 2008 www.faseout.ca83 Growth and FAS Unsure of the effect of alcohol on growth parameters later on in life. Substantial literature on the association between maternal alcohol consumption during pregnancy and decreased neonatal weight, length and head circumference McFadyen, K. (2005)

84. Stade 2008 www.faseout.ca84 Studies: Growth and FASD Russell (1991) Differences in head circumference and ht at 6 years Sampson (1994) No detectable differences from 8 mos to 14 years Day (2002) 1 st trimester exposure predicted significant reductions in wt, HC, and length 2 nd trimester exposure predicted significant reductions in wt and skinfold thickness

85. Stade 2008 www.faseout.ca85 Nutrition and FASD Infants and young children with FASD must have there growth followed regularly Those with poor growth/growth restriction should be followed by a dietician Motor dysfunction resulting in poor suck and swallow requires OT intervention “Picky eaters” requires patience, persistence, and imagination.

86. Stade 2008 www.faseout.ca86 Essential Fatty Acids

87. Stade 2008 www.faseout.ca87 What we know…. Essential fatty acids (EFA) are necessary for the formation of healthy cell membranes, proper development and function of the brain and nervous system – Omega 3 and Omega 6 fatty acids must be provided from food as they cannot be synthesized by the body. McFadyen, K. (2005)

88. Stade 2008 www.faseout.ca88 ESSENTIAL FATTY ACIDS OMEGA 3 FATTY ACIDS OMEGA 6 FATTY ACIDS Green leafy vegetables, flax, flaxseed oil, canola oil, walnuts, Brazil nuts, fish oil, fish, tofu, and eggs Vegetable oils (soybean, safflower, and corn oil), nuts and seeds

89. Stade 2008 www.faseout.ca89 What we know continued… Some evidence indicates that fatty acid deficiencies or imbalances may contribute to the negative sequelae of some childhood neuro-developmental disorders. McFadyen, K. (2005)

90. Stade 2008 www.faseout.ca90 EFA Supplementation 1.There have been no studies to date looking at EFA supplementation and children with FASD 2.Some studies have demonstrated the benefits of EFA in children with other neuro- developmental disorders – but other research have found no effect

91. Stade 2008 www.faseout.ca91 Thoughts ….. 1.Pregnancy stresses maternal EFA status because the mother must supply fatty acids needed for fetal and placental growth. 2.Alcohol can disturb placental transport. 3.Alcohol increases fatty acid catabolism – resulting in ???

92. Stade 2008 www.faseout.ca92 What we do not know…. 1.Whether supplementation of essential fatty acids may benefit in children with FASD 2.Optimal dosage of fatty acids 3.Optimal composition (Omega 3 and Omega 6 fatty acids) 4.Dose – response relationship 5.Duration or treatment

93. Stade 2008 www.faseout.ca93 In the End…… Encourage the young child with FASD to eat a variety of foods from the four food groups To increase intake of EFA’s offer fish, eggs, nuts, seeds and use vegetable oils Monitor growth McFadyen, K. (2005)

94. Stade 2008 www.faseout.ca94 Social Skills & Friendships

95. Stade 2008 www.faseout.ca95 Social Skills and Friendships Social skill development should begin early for children with FASD Distractibility, aggressiveness and, and impulsivity can interfere with social development

96. Stade 2008 www.faseout.ca96 Social Skills and Friendships Social skills program –Practice, model, rehearse social skills Foster activities that the child likes and is good at Brief activities in small groups

97. Stade 2008 www.faseout.ca97 Social Skills and Friendships Invite other children to the home and adapt the situation so it is fun for the other children Educate young children that they may learn or respond to situations or stimuli somewhat differently than others

98. Stade 2008 www.faseout.ca98 Caregivers

99. Stade 2008 www.faseout.ca99 Strategies for Caregivers Keep remembering they are not willfully trying to make you exhausted or crazy Forgive yourself when you lose your temper Allow yourself to grieve Advocate for their needs It will make you feel better about them and yourself.

100. Stade 2008 www.faseout.ca100 Strategies for Caregivers Do something for yourself every day Find someone you can talk to Try to get in as many breaks as possible – friends, family, respite Monitor yourself for signs of increased stress and depression

101. Stade 2008 www.faseout.ca101 Thank-You!