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Title: Fetal%20Alcohol%20Spectrum%20Disorders:%20Thinking%20Prevention


1
Fetal Alcohol Spectrum Disorders Thinking
Prevention
  • Leslie McCrory, LPC, LCAS, CCS
  • NC Teratogen Information Service
  • Missions Fullerton Genetics Center
  • Asheville, NC
  • 828-213-0035/ leslie.mccrory_at_msj.org

2
Why are we here?
  • Primary care providers and others who care
    for children do not routinely or consistently
    identify individuals with FAS
  • --CDC, 2005

3
The Benefit of the Referral
For so many years, parents have been told by
family practitioners that there is no benefit in
getting a diagnosis because nothing can be done
about FAS anywaya medical diagnosis related to
prenatal alcohol exposure can be a pivotal
experience for children and families as far as
understanding what is going on and then finding
out how to improve their quality of
life. --Joice DeVries Parent of a child
with FASD Published in F.A.S. Times (Winter
2005/2006)
Published in F.A.S. Times (Winter 2005/2006)
4
How is this problem being addressed
  • Outreach education
  • Development of screening tools
  • Increase in referrals overall (sensitivity)
  • Improvement in the quality of referrals
    (specificity)
  • Creation of the first FASD Clinic in NC
  • Fullerton Genetics CenterMay 1, 2005
  • Asheville, NC

5
What is FAS?
  • FAS stands for Fetal Alcohol Syndrome.
  • It is one of the terms under FASD used to
    describe individuals affected by alcohol.
  • People with FAS have
  • certain facial features,
  • poor growth and/or weight gain and
  • brain damage.

6
How many children have you seen with FAS/FASD
within the last year?
7
How many children have you seen with Down
syndrome within the last year?
8
Prevalence
  • 0.2 to 1.5 cases per 1,000 births (CDC, 2004) for
    FAS
  • U.S. has about 4,100 FAS births (Lewin Group,
    2005)
  • US has about 40,000 births each year with
    FASD/ARD

9
FAS in American Indian populations
  • US Indian Reservations 1/50-1/750 live births
  • Highest incidence ever reported is 1 in 8.

Summarized in Streissguth, 1996
10
Other high-risk groups
3 hospitals - Carolinas Medical in Charlotte -
Ed Spence - Moses Cone in Greensboro - Pam
Rittenhauer - Mission Hospitals Fullerton
Genetics Center in Asheville Ellen Boyd and
William (Bill) Allen

children adopted children from Eastern Europe or
South Africas Western Cape province.
11
FAS is severely under diagnosed
  • According to the North Carolina Center for
    Health Statistic there were 120,247 live births
    in the year 2000. If the incidence of FAS is
    correct, then
  • 36-264 babies were born with FAS and in
  • North Carolina
  • (an additional 962 were born with
  • some degree of brain damage - FASD)

12
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13
Alcohol causes more damage to the developing
fetus than any other substance, including
marijuana, heroin, and cocaine.
Institute of Medicine, 1996
14
FASD and Alcohol
  • All alcoholic beverages are harmful during
    pregnancy.
  • Binge drinking is especially harmful.
  • There is no proven safe amount of alcohol use
    during pregnancy.

15
FASD and Alcohol
  • Binge 4 or more drinks on one occasion
  • Drink 12 ounces of beer, 5 ounces of wine, or
    1.5 ounce of hard liquor



16
Cost
  • FAS costs US 5.4 billion
  • An FAS birth carries lifetime health/special ed
    costs of 753,000, although can be as high as
    3.7 million
  • The estimated costs for NC is 81.4 million/year
  • FAS is among the most costly birth defect

Lewin Group, 2004
17
FASD Facts
  • 100 percent preventable
  • Leading known cause of preventable mental
    retardation
  • Not caused on purpose
  • Can occur anywhere and anytime pregnant women
    drink
  • Not caused by biologic fathers alcohol use
  • Not a new disorder



18
Of pregnant women identified having risky
behavior with alcohol
2.5 had children with full FAS
50 had children with some degree of deficits or
a birth defect that could be alcohol-related
47.5 had children with no apparent effects
19
FAS is only the tip of the iceberg!
20
Alcohol can affect the development of almost the
entire body!
Face Teeth Eyes Ears Musculoskeletal Heart,
kidney Brain
21
What is FASD?
  • Fetal Alcohol Spectrum Disorders (FASD) is an
    umbrella term describing the range of effects
    that can occur in an individual whose mother
    drank alcohol during pregnancy.
  • These effects may include physical, mental,
    behavioral, and/or learning disabilities with
    possible lifelong implications.
  • The term FASD is not intended for use as a
    clinical diagnosis.

22
Spectrum of effects
Fetal death/ SIDS
  • No effects

FAE
FAS
FASD
23
What is FAS?
  • FAS stands for Fetal Alcohol Syndrome.
  • It is one of the terms under FASD used to
    describe individuals affected by alcohol.
  • People with FAS have certain facial features,
    poor growth and/or weight gain and brain damage.

24
What is FAS?
  • There is no definitive blood or imaging test that
    can tell you if someone has FAS for sure.
  • An individual with FAS is not necessarily more
    affected than other levels of prenatal alcohol
    exposure.

25
New Diagnostic Guidelines for FAS
  • Created July 2004 by FAS Task Force
  • Available from the Centers for Disease Control
    and Prevention (www.cdc.gov/ncbddd/fas/default.htm
    )

26
Diagnostic criteria for FAS (CDC, 2004)
  • Evidence of growth retardation/restriction
  • Confirmed pre/postnatal height and/or weight at
    or below the 10th
  • Characteristic facial anomalies
  • Smooth philtrum
  • Thin vermillion border
  • Small palpebral fissures
  • Central Nervous System Abnormalities
  • Structural
  • Neurological
  • Functional

27
  • Short palpebral fissures
  • Smooth philtrum
  • Thin upper lip

28
Other FAS Facial Anomalies
Source www. niaaa.nih.gov/
Source www.come-over.to/FASCRC/
29
Characteristic FAS Facial Features
30
Measuring Palpebral Fissures
At or below the 10th for age is positive
University of Washington, FASD Diagnostic
Prevention Network, 2004
31
Rating Lip and Philtrum
A 4 or 5 on the lip OR philtrum is positive.
University of Washington, FASD Diagnostic
Prevention Network, 2004
32
Diagnostic criteria for FAS (CDC, 2004)
  • Evidence of growth retardation/restriction
  • Confirmed pre/postnatal height and/or weight at
    or below the 10th
  • Characteristic facial anomalies
  • Smooth philtrum
  • Thin vermillion border
  • Small palpebral fissures
  • Central Nervous System Abnormalities
  • Structural
  • Neurological
  • Functional

33
How alcohol affects the brain
  • Corpus callosum
  • Connects the 2 halves of the brain
  • May play a role in communication within the brain
  • Basal ganglia, especially the caudate nucleus
  • Cognition
  • Emotion
  • Motor activity

34
How alcohol affects the brain
  • Frontal lobes
  • Controls emotional responses
  • Controls expressive language
  • Assigns meanings to words
  • Processing information
  • Deciding how to act in a specific situation
  • Processing humor

35
How alcohol affects the brain
  • Hippocampus
  • Memory
  • Learning
  • Emotion
  • aggression
  • Amygdala
  • Fear
  • Anger
  • Aggression

36
Structural
  • Head circumference below the 10th
  • Clinically significant brain abnormalities

37
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38
Neurological
  • Neurological problems not due to a postnatal
    insult or fever, etc.
  • Seizures or tremors
  • Problems with coordination
  • Visual motor difficulties
  • Nystagmus (eye movement)
  • Difficulty with motor control

39
Functional
  • Global cognitive or intellectual deficits (IQ)
  • or
  • Functional deficits
  • Cognitive or developmental deficits
  • Executive functioning
  • Motor functioning
  • Problems with attention or hyperactivity
    (ADD/ADHD)
  • Social skills
  • Other (sensory problems, certain language
    problems, memory deficits, etc)

40
Myth All children with FAS are mentally
retarded.

Adapted from Streissguth, 1996
41
Unfortunately, most children affected by prenatal
alcohol damage will not have the facial features
associated with FAS and may never be referred for
services.
42
Infancy to Preschool (birth to 5 years)
  • Physical symptoms
  • Behavior/ emotional symptoms

Pictures used with permission of Theresa Kellerman
43
School Age (Ages 6-11)
  • Physical symptoms
  • Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
44
Adolescence (Ages 12-17)
  • Physical symptoms
  • Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
45
Adult (Ages 18)
  • Physical symptoms
  • Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
46
John at 21
  • IQ68
  • Fine motor controlyoung child
  • Expressive languageyoung adult

Source http//come-over.to/FAS/
Pictures used with permission of Theresa Kellerman
47
Likely Co-occurring Disorders and/or Misdiagnoses
With FASD
  • Attention-Deficit/Hyperactivity Disorder
  • Substance use disorders
  • Schizophrenia
  • Delusional disorder
  • Depression
  • Bipolar disorder
  • Oppositional Defiant/Conduct Disorder
  • Reactive Attachment Disorder
  • Separation Anxiety Disorder
  • Posttraumatic Stress Disorder
  • Traumatic Brain Injury

48
Overall Difficulties for Persons With an FASD
Information
  • Taking in information
  • Storing information
  • Recalling information when necessary
  • Using information appropriately in a
    specific situation

49
Typical Difficulties for Individuals With an FASD
  • Multiple Issues
  • Cannot entertain themselves
  • Have trouble changing tasks
  • Do not accurately pick up
    social cues

50
Typical Difficulties for Persons With an FASD
  • Self-Esteem and Personal Issues
  • Function unevenly in school, work, and
    development
  • Experience multiple losses
  • Are seen as lazy, uncooperative, and unmotivated
  • Have hygiene problems

51
Typical Difficulties for Persons With an FASD
Executive Function Deficits
  • Go with strangers
  • Repeatedly break the rules
  • Do not learn from mistakes or natural
    consequences
  • Frequently do not respond to point, level, or
    sticker systems
  • Have trouble with time and money
  • Give in to peer pressure

Im late! Im late!
52
Typical Difficulties for Persons With an FASD
  • Information Processing Problems
  • Do not complete tasks or chores and may appear to
    be oppositional
  • Have trouble determining what to do in a given
    situation
  • Do not ask questions because they want to fit in

53
Typical Difficulties for Persons With an FASD
  • Information Processing Problems
  • Say they understand when
    they do not
  • Have verbal expressive skills that often exceed
    their level of understanding
  • Misinterpret others words, actions, or body
    movements
  • Have trouble following multiple directions

YES! (How do you straighten up? Make sure the
bed/chair is straight?)
Straighten up your room and put your toys away.
Do you understand?
54
Typical Difficulties for Persons With an FASD
  • Memory Problems
  • Multiplication
  • Time sequencing

?
55
Typical Difficulties for Persons With an FASD
  • Sensory Integration Issues
  • Are overly sensitive to sensory input
  • Upset by bright lights or loud noises
  • Annoyed by tags in shirts or seams in socks
  • Bothered by certain textures of food
  • Have problems sensing where their
    body is in space (i.e., clumsy)

56
Primary Disabilities in Persons With an FASD
  • Lower IQ
  • Impaired ability in reading,
    spelling, and arithmetic
  • Lower level of adaptive functioning
    more significantly impaired than IQ


Age 21 Graduation from high school Photo
courtesy of www.fasstar.com
Streissguth, et al. (1996)
57
Benefits of an early diagnosis
  • Customize developmental approaches/goals
  • Elucidates case for learning/behavior problems
  • Helps families build network of support
  • May bring about more awareness and resources
  • May prevent further alcohol-exposed pregnancies

58
Follow-up of alcohol affected individuals
Streissguth et al, 1996
59
Discussing Referral with Caregiver
  • How do you discuss referring a child for an
    evaluation for FASD with a caregiver?
  • What are the similarities/differences when
    talking to adoptive/foster parents vs. biological
    parents?

60
Clinical Geneticists in NC
  • There are seven genetics centers in the state
    with Clinical Geneticists.
  • The 4 medical schools
  • -UNC-CH - Art Aylesworth and Cindy Powell
  • -Duke - Marie MacDonald and Vandaria Shashi
  • -Wake Forest, Tamison Jewett and new hire (?)
  • -East Carolina Berrin Oxturk

61
Clinical Geneticists in NC
  • 3 hospitals
  • - Carolinas Medical in Charlotte - Ed Spence
  • - Moses Cone in Greensboro - Pam Rittenhauer
  • - Mission Hospitals Fullerton Genetics Center in
    Asheville Ellen Boyd and William (Bill) Allen

62
Treatment and Intervention for Individuals with
FASD
63
Successful Intervention 8 magic keys
  1. Concrete
  2. Consistency
  3. Repetition
  4. Routine

Deb Evensen and Jan Lutke,1997
64
Successful Intervention 8 magic keys
  • Simplicity
  • Specific
  • Structure
  • Supervision

Deb Evensen and Jan Lutke,1997
65
Setting Individuals with a FASD up for Success
  • Often there is a disconnect between language and
    understanding in individuals with a FASD.
  • A child with a FASD may be able to repeat a
    direction you gave him however not follow it.
  • To be sure the child understands a direction ask
    him to show you.
  • Children who are old enough to read often do well
    with brief, specific, written instructions.

66
Remember
  • No right or wrong
  • No good or bad
  • No Judgment
  • Poor Fit equals Problem Behavior
  • Stop fighting and look at fit for individual child

67
Setting Individuals with a FASD up for Success
  • EXAMPLE Structured Free-time
  • AFTER SCHOOL
  • Put backpack in cubby
  • Snack fruit roll-up
  • Complete Math homework
  • Complete English homework
  • Complete Science homework
  • 1 hour free time (t.v. / video game)
  • 530 Dinner
  • 630 karate practice
  • 730 get ready for bed (another checklist)
  • 800 bedtime

68
Free booklet for families
  • Download at the Organization of Teratology web
    site at www.otispregnancy.org
  • Families can call 1-800-532-6302 to get a free
    hard copy

69
Summary
  • Red Flags of organic brain damage
  • small head circumference
  • seizures and tremors
  • poor hand-eye coordination
  • 3 universally accepted facial features a
    diagnosis of FAS
  • small palpebral fissures (small eye opening)
  • smooth philtrum (space under nose no ridges)
  • thin vermillion (thin upper lip)

70
Summary
  • Children with a FASD are often dually-diagnosed
    or misdiagnosed with
  • ADD/ADHD
  • Conduct or Oppositional Defiant Disorder
  • Anxiety
  • Depression
  • Sleep disorders
  • If you suspect a child has FASD, tell the parent
    you have some concerns about the possible effects
    of his development, growth, or physical
    differences and would like the child to be seen
    by a specialist (geneticist) for a more thorough
    evaluation.

71
Summary
  • Children with FASD do not always present with
    facial deformities.
  • Children with FASD usually respond best to
  • plain environments
  • Minimized stimulation
  • simple step-by-step instructions

72
Paradigm Shift
  • We must move from viewing the individual as
    failing if s/he does not do well in a program to
    viewing the program as not providing what the
    individual needs in order to succeed
  • -- Dan Dubovsky, 2000

73
References
  • National Organization for Fetal Alcohol Syndrome-
    www.nofas.org
  • National Institute on Alcohol abuse alcoholism
    www.NIAAA.nih.gov
  • Center for Disease Control www.cdc.gov
  • Substance Abuse Mental Health Services
  • Administration www.samhsa.gov
  • FAS Consultation, Education, and training
    Services - www.FASCETS.org/info
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