Stade Fetal Alcohol Spectrum Disorder: Assessment & Strategies

Stade 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

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

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

Stade Introduction: Fetal Alcohol Spectrum Disorder Defined Growth Restriction Facial Anomalies CNS Dysfunction Prenatal Alcohol Exposure

Stade 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).

Stade 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

Stade 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):

Stade 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.

Stade 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 )

Stade Etiology No safe time to drink during pregnancy No known safe amount

Stade Risk Factors Maternal Age and Parity Chronicity of Alcoholism Socioeconomic Status Polydrug Use Ethnicity Fetal Susceptibility

Stade Diagnostic Guidelines

Stade Important Features of Diagnostic Guidelines Minimize false negatives and false positives Precisely define diagnostic criteria Consider genetic and family histories Multidisciplinary approach

Stade 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

Stade 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.

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

Stade 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

Stade Facial Features Short palpebral fissures Smooth or flat philtrum Thin upper lip

Stade Facial Features

Stade Associated Anomalies Cardiac anomalies Joint and limb anomalies Neurotubal defects Anomalies of the urogenital system Hearing disorders Visual problems Severe dental malocclusions

Stade 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

Stade Early Infancy Tremors Poor suck Hypotonic/Hypertonic Irritability Feeding problems Developmental delay

Stade Early Childhood Cognitive Problems Motor Issues Behavioral Presentation Sensory Dysfunction Speech Delay Hyperactivity Socialization Difficulties

Stade 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

Stade 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

Stade Diagnostic Criteria FAS Evidence of growth impairment 3 facial anomalies 3 central nervous system domains impaired Confirmed or unconfirmed alcohol exposure

Stade Diagnostic Criteria Partial FAS 2 facial anomalies 3 central nervous system domains impaired Confirmed alcohol exposure.

Stade Diagnostic Criteria ARND 3 central nervous system domains impaired Confirmed alcohol exposure.

Stade Screening

Stade 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.

Stade 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.

Stade Cognitive, Behavioral, Social Development and Nutrition of Children from Birth to Age 6

Stade Cognitive

Stade Cognition Attention problems and memory deficits often make learning difficult in the young child.

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

Stade 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).

Stade 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).

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

Stade 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”.

Stade Cognition: Strategies Treasure hunts Problem-solving activities Visual-spatial games Story building Math skills: visual teaching

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

Stade Sensitivity

Stade 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.

Stade 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

Stade 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

Stade Sensory Processing How does sensory processing abilities impact on day-to-day life of a child with FASD?

Stade Normal Sensory Integration Schwab, D. (2001).

Stade Sensory Processing Hypersensitive –Touch (Touch Processing) –Noise (Auditory Processing –Visual Input (Visual Processing). Dysfunction in Behavioural Outcomes of Sensory Processing.

Stade 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

Stade Sensory Processing Strategies Weighted Vests Deep Massage Bear Hugs Activities using a number of muscles groups

Stade 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

Stade 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

Stade Sensory Processing Strategies Group play – use little mats Recognize why a child may refuse to participate in a game Occupational Therapy

Stade Sensory Processing Hyposensitive –Pain –Hot or Cold

Stade Strategies: Hyposensitive Supervision Avoid overdressing in summer Ensure dressed adequately in winter Ensure child monitored and receives adequate care when ill

Stade Behaviours Behavioural and Emotional Responses may reflect the child’s outcomes of sensory processing.

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

Stade Strategies Fidget Items Short periods of sitting still Hammock Teaching during activity Music

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

Stade 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

Stade Difficult Behaviours Calming strategies: –Comfort corner –Tents and caves –Very short time outs –Deep pressure

Stade 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

Stade 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.

Stade 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.

Stade 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

Stade Crying: Young Child Modify environment Ensure child can communicate needs – pictures, sign language Assessment by a mental health professional

Stade Health & Illness

Stade Health and Illness Generally, FASD is not defined by associated physical disability or illness.

Stade Health & Illness Some children with FASD are born with organ anomalies.

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

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

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

Stade Health & Illness Young children with FASD are particularly prone to upper respiratory illnesses and ear infections Monitoring and ensure treatment as necessary

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

Stade Sleep

Stade Sleep Disturbances Sleep disturbances among individuals with FASD are not uncommon Younger children often have trouble falling asleep and waking

Stade Sleep Disturbances They may have trouble settling and wake often throughout the night Night terrors among individuals with FASD can continue throughout life

Stade 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

Stade 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

Stade 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

Stade Nutrition

Stade 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)

Stade 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

Stade 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.

Stade Essential Fatty Acids

Stade 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)

Stade 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

Stade 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)

Stade 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

Stade 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 ???

Stade 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

Stade 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)

Stade Social Skills & Friendships

Stade Social Skills and Friendships Social skill development should begin early for children with FASD Distractibility, aggressiveness and, and impulsivity can interfere with social development

Stade 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

Stade 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

Stade Caregivers

Stade 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.

Stade 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

Stade Thank-You!