stade 2008 fetal alcohol spectrum disorder: assessment & strategies

Stade 2008 www.faseout.ca 1

Fetal Alcohol Spectrum Disorder: Assessment & Strategies


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


Introduction

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


Introduction

• Caused by prenatal exposure to alcohol.

• FASD is the leading cause of developmental and cognitive disabilities among Canadian children.


Introduction: Fetal Alcohol

Spectrum Disorder Defined • Growth Restriction

• Facial Anomalies

• CNS Dysfunction

• Prenatal Alcohol Exposure


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).


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


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.


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.


Standard drinks = 0.5 oz alcohol12 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 )


Etiology

• No safe time to drink during pregnancy

• No known safe amount


Risk Factors

• Maternal Age and Parity

• Chronicity of Alcoholism

• Socioeconomic Status

• Polydrug Use

• Ethnicity

• Fetal Susceptibility


Diagnostic Guidelines


Important Features of Diagnostic Guidelines

• Minimize false negatives and false positives

• Precisely define diagnostic criteria

• Consider genetic and family histories

• Multidisciplinary approach


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


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.


Canadian Guidelines for Diagnosis

• Physical Exam

• General physical to rule out other disorders

• Growth (at or below 10th percentile)

• Facial features


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


Facial Features

• Short palpebral fissures

• Smooth or flat philtrum

• Thin upper lip


Facial Features


Associated Anomalies• Cardiac anomalies

• Joint and limb anomalies

• Neurotubal defects

• Anomalies of the urogenital system

• Hearing disorders

• Visual problems

• Severe dental malocclusions


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


Early Infancy

• Tremors

• Poor suck

• Hypotonic/Hypertonic

• Irritability

• Feeding problems

• Developmental delay


Early Childhood

• Cognitive Problems

• Motor Issues

• Behavioral Presentation

• Sensory Dysfunction

• Speech Delay

• Hyperactivity

• Socialization Difficulties


Canadian Guidelines for DiagnosisMaternal Alcohol History in Pregnancy

• Key to establishing an accurate diagnosis

• Require confirmation based on clinical records, self-report, reliable observation


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


Diagnostic Criteria

FAS

• Evidence of growth impairment

• 3 facial anomalies

• 3 central nervous system domains impaired

• Confirmed or unconfirmed alcohol exposure


Diagnostic Criteria

Partial FAS

• 2 facial anomalies


• Confirmed alcohol exposure.


Diagnostic Criteria

ARND


• Confirmed alcohol exposure.


Screening


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.


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.


Cognitive, Behavioral, Social Development and Nutrition of Children

from Birth to Age 6


Cognitive


Cognition

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


Cognition

• Infants and young children with FASD live with differing levels of cognitive abilities

• All programs to develop cognitive abilities should be child specific.


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).


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).



• May need to use short sentences

• Break down information and instruction

• Repetition, Repetition, Repetition

• Teach one concept at a time.



• “ 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”.



• Treasure hunts

• Problem-solving activities

• Visual-spatial games

• Story building

• Math skills: visual teaching


Cognition

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


Sensitivity


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.


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


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


Sensory Processing

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


Normal Sensory Integration

• Schwab, D. (2001).


Sensory Processing• Hypersensitive

– Touch (Touch Processing)– Noise (Auditory Processing– Visual Input (Visual Processing).

• Dysfunction in Behavioural Outcomes of Sensory Processing.


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


Sensory Processing Strategies

• Weighted Vests

• Deep Massage

• Bear Hugs

• Activities using a number of muscles groups



• Tone down the room’s effects on all senses

• Avoid decorated rooms

• Walls should be single colour and very pale

• Avoid clutter



• 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



• Group play – use little mats

• Recognize why a child may refuse to participate in a game

• Occupational Therapy


Sensory Processing

Hyposensitive

– Pain

– Hot or Cold


Strategies: Hyposensitive

• Supervision

• Avoid overdressing in summer

• Ensure dressed adequately in winter

• Ensure child monitored and receives adequate care when ill


Behaviours

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


Behaviour: Hyperactivity

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


Strategies

• Fidget Items

• Short periods of sitting still

• Hammock

• Teaching during activity

• Music


Difficult Behaviours

• What is needed is a change in thinking from discipline to redirection or re-teaching

• Prevention – sensory strategies, transitioning


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


Difficult Behaviours

Calming strategies:

– Comfort corner

– Tents and caves

– Very short time outs

– Deep pressure


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


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.


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.


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


Crying: Young Child

• Modify environment

• Ensure child can communicate needs – pictures, sign language

• Assessment by a mental health professional


Health & Illness


Health and Illness

Generally, FASD is not defined by associated physical disability or illness.


Health & Illness

Some children with FASD are born with organ anomalies.


Organ Anomalies

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


Health & Illness

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


Health & Illness

• The infant should not be exposed to environmental irritants such as tobacco smoke

• Protect the infant from exposure to viruses.


Health & Illness

• Young children with FASD are particularly prone to upper respiratory illnesses and ear infections

• Monitoring and ensure treatment as necessary


Health & Illness

Motor deficits are not uncommon in infants and young children with FASD

– Infant & Pre-school stimulation programs

– Occupational Therapy


Sleep


Sleep Disturbances

• Sleep disturbances among individuals with FASD are not uncommon

• Younger children often have trouble falling asleep and waking


Sleep Disturbances

• They may have trouble settling and wake often throughout the night

• Night terrors among individuals with FASD can continue throughout life


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


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


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


Nutrition


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)


Studies: Growth and FASDRussell (1991)

• Differences in head circumference and ht at 6 years

Sampson (1994) • No detectable differences from 8 mos to 14

years

Day (2002)• 1st trimester exposure predicted significant

reductions in wt, HC, and length• 2nd trimester exposure predicted significant

reductions in wt and skinfold thickness


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.


Essential Fatty Acids


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)


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


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)


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


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 ???


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


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)


Social Skills & Friendships


Social Skills and Friendships

• Social skill development should begin early for children with FASD

• Distractibility, aggressiveness and, and impulsivity can interfere with social development



• Social skills program– Practice, model, rehearse social skills

• Foster activities that the child likes and is good at

• Brief activities in small groups



• 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


Caregivers


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.


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


Thank-You!

stade 2008 fetal alcohol spectrum disorder: assessment & strategies

Documents

alcohol slide

etiology alcohol

prevalence slide

assessment strategies

nervous system slide

grams of absolute alcohol

introduction cost of

standard drinks