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

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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

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Why are we here?

• Primary care providers and others who care
  for children do not routinely or consistently
  identify individuals with FAS
• --CDC, 2005

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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)
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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

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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.

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How many children have you seen with FAS/FASD
within the last year?
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How many children have you seen with Down
syndrome within the last year?
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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

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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
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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.
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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)

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Alcohol causes more damage to the developing
fetus than any other substance, including
marijuana, heroin, and cocaine.
Institute of Medicine, 1996
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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.

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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

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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
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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

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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
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FAS is only the tip of the iceberg!
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Alcohol can affect the development of almost the
entire body!
Face Teeth Eyes Ears Musculoskeletal Heart,
kidney Brain
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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.

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Spectrum of effects
Fetal death/ SIDS

• No effects

FAE
FAS
FASD
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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.
  

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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.

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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
  )

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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

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• Short palpebral fissures
• Smooth philtrum
• Thin upper lip

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Other FAS Facial Anomalies
Source www. niaaa.nih.gov/
Source www.come-over.to/FASCRC/
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Characteristic FAS Facial Features
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Measuring Palpebral Fissures
At or below the 10th for age is positive
University of Washington, FASD Diagnostic
Prevention Network, 2004
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Rating Lip and Philtrum
A 4 or 5 on the lip OR philtrum is positive.
University of Washington, FASD Diagnostic
Prevention Network, 2004
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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

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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

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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

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How alcohol affects the brain

• Hippocampus
• Memory
• Learning
• Emotion
• aggression
• Amygdala
• Fear
• Anger
• Aggression

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Structural

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

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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

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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)

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Myth All children with FAS are mentally
retarded.

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

• Physical symptoms
• Behavior/ emotional symptoms

Pictures used with permission of Theresa Kellerman
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School Age (Ages 6-11)

• Physical symptoms
• Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
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Adolescence (Ages 12-17)

• Physical symptoms
• Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
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Adult (Ages 18)

• Physical symptoms
• Behavior/emotional symptoms

Pictures used with permission of Theresa Kellerman
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John at 21

• IQ68
• Fine motor controlyoung child
• Expressive languageyoung adult

Source http//come-over.to/FAS/
Pictures used with permission of Theresa Kellerman
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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

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Overall Difficulties for Persons With an FASD
Information

• Taking in information
• Storing information
• Recalling information when necessary
• Using information appropriately in a
  specific situation

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Typical Difficulties for Individuals With an FASD

• Multiple Issues
• Cannot entertain themselves
• Have trouble changing tasks
• Do not accurately pick up
  social cues

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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

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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!
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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

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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?
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Typical Difficulties for Persons With an FASD

• Memory Problems
• Multiplication
• Time sequencing

?
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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)

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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)
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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

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Follow-up of alcohol affected individuals
Streissguth et al, 1996
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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?

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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

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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

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Treatment and Intervention for Individuals with
FASD
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Successful Intervention 8 magic keys

1. Concrete
2. Consistency
3. Repetition
4. Routine

Deb Evensen and Jan Lutke,1997
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Successful Intervention 8 magic keys

• Simplicity
• Specific
• Structure
• Supervision

Deb Evensen and Jan Lutke,1997
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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.

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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

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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

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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

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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)

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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.

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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

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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

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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