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Fetal Alcohol Spectrum Disorders (FASD)
Washington D.C.
Causes of Mental Retardationin the U.S.
• Prenatal Alcohol Syndrome
• Downs Syndrome
• Fragile X Syndrome
FASD in Washington D.C.
• Born each yearFAS 15
ARND 63
Total 78
Cost of FASD in Washington D.C.
• Daily cost $32,177
• Annual cost $14,520,068– Special Education
and Juvenile Justice $2,775,360
• Five year cost $58.7 million
FASD RATES IN NORTH DAKOTA
Location Population FASD Rates_________________________________________________________________
North Dakota Live Births 1.1% 1980-2003
Site 1 Prenatal care 1/17 = 6% Child tracking1984-1996
Site 2 Kindergarten students FAS = 1/98 students1992-2005 FASD = 17.6 – 22 per
1,000 children
North Dakota Statewide EPSDT 28/2,809 = 1%One year 2001
Cost of Care for FASD
Paying Upfront
On the day before the child with FASD is born, a state needs to deposit over $540,000 in the bank to cover the lifetime cost of care.
THE MOMS
Age 27.4
Education 10.6
Unmarried 63%
Smoker 82%
Alcoholic 10+ years
Heavy Drinker > 10 day +
Treatment > 3 (45%)
Minority 53%
Poor +
Poor Diet +
Parity 3
Prenatal (1st) 1
Prenatal visits <3
Maternal Deaths 2.8%
THE DADS
Age 30.8
Education 10.9
Unmarried 63%
Alcoholic 12 + years
Heavy Drinker +
Treatment > 3
Minority 60%
Poor +
THE CHILDRENAge Diagnosis 7.1 years
Older Sibs 2
Younger 2
Birth Defects 15%
Cerebral Palsy 6%
Mental Retardation 25%
ADHD 75%
Out of Home 85%
Head Injury 15%
FASD Deaths
Dead Sibling
2.4%
4.5%
Dosage Effect on Subsequent Births
1st Child 2nd Child 3rd Child 4th Child
Severity
Often unaffected
1 minor disorder or defect
FAS
FAS with Multiple Comorbidities
Severity Effect on Subsequent Births
FASD – Familial and Generational
X
X
FAS - Red
PFAS - Yellow
ARND - Green
SIDS
MATERNAL RISK SCORE SCORE____Age Over 25 years____Unmarried, Divorced, Widow, Living with Partner Check any one,____On AFDC, WIC, Social Security or Income < $16,000 Per Year Add 5____Did not Graduate From High School____Poor Diet ____Smokes More Than ½ Pack per Day
____Drinks less than 2 days/week & less than Check here, 2 drinks /drinking day Add 20
____Age First Drunk Less Than 15 years____In Treatment Over Three Times ____In Treatment in Last 12 Months Check any one,____Previous Child With FASD, Add 35 or Developmental Disability____Previous Child Died
____Children Out of Home (Foster Care or Adopted)Check any one,
____Heavy Drinker (3 or more days per week or over 3 drinks Add 45 per drinking day)____Uses Inhalants, Sniffs or Illegal Drugs
Score Risk Category Recommendations 0 None Standard Prenatal Care5 Low Standard Prenatal Care 20-40 Moderate Standard Prenatal Care and Patient Education on FAS45-50 High High Risk pregnancy, Alcohol-Drug Abuse Treatment55-85 Very High High Risk Pregnancy, Inpatient Treatment Total Score
PrenatalCopyright 2000
Exposure Assessment
When was your last drink?
D r i n k i n g D u r i n g P r e g n a n c yC u m u l a t i v e F e t a l E x p o s u r e F e t a l E x p o s u r e t o F u l l
D r i n k s P e r D a y ( D r i n k s p e r d a y x 2 7 0 ) A b s o l u t e A l c o h o l i n O z . * B a b y B o t t l e s
1 2 7 0 1 3 5 1 51 5
2 5 4 0 2 7 0 3 33 3
1 0 2 7 0 0 1 3 5 0 1 6 81 6 8
A.A. Nava-Ocampo et al./Reproductive Toxicology 18 (2004) 613-617
Time-course of maternal blood ethanol concentrations. Symbols represent the observed ethanol concentrations and lines resent the predicted values. The different shapes were used to represent the six patients; however, no specific order was used.
Diagnosis
FASD: Screening and Early Identification
• Sibling with FASD
• Mother in substance abuse treatment
• Foster care placement
• WIC clinics
• Juvenile Justice Programs
• Specialty Care Clinics
Phenotype
Detectability
Low
High
FASD Diagnostic Age in YearsBirth
2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36
Criteria are Age Dependent
0
2
4
6
8
10
12
14
16
18
3rd 5th 10th
FAS Part FAS No FAS
Percent of Children who Moved Up in Height Percentile Category from Birth to Diagnosis
%
N=232
Ikonomidou C, et al. Science 287:1056-1060, 2000.
FASD Related Impairments
• Memory
• Attention
• Adaptive behavior
• Use of social rules
• Sleep
• Behavior regulation
Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72
Small head circumference
Epicanthic folds
Short nose
Indistinct philtrum
(an underdeveloped groove in the center of the upper lip between the nose and lip edge)
Short midface
Low nasal bridge
Short palpebral fissures obscure
the canthus (the inner corner
of the eye)
a normal feature in certain species of the Mongolian
race
Thin reddish upper lip
Fetal Alcohol Screening
Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72
Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72
Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72
Exposu
re
High
LowFetal Stillbirth Infant FASD-ARNDDeath Mortality
Adverse Outcomes
FASD: Does a diagnosis make a difference?
FASD Diagnosis Related Risks
• Cardiac defects > 30 fold
• ADHD > 25 fold
• Foster care placement > 50 fold
• Substance abuse risk > 20 fold
• Mental illness > 15 fold
• Corrections placement > 10 fold
Does a diagnosis of FASD change intervention?
FASD: Diagnosis Specific Management Issues
• Mortality rate increased 3-7 fold
• Substance abuse treatment for mother
• Evaluate all siblings
• Increased risk of substance abuse
• Recurrence rate in younger siblings 75%
• Long term planning
• Prevention of secondary disabilities
Treatment of FAS
• Start early-Avoid Abuse• Avoid multiple foster homes• Treat in community• Make a place in the community• Avoid problem peers• Use legal system• Long term treatment-more than 10 years
Common Recommendations
• Annual Evaluation• Positive Behavior Management Program• Respite Care• IEP• Monitor Peers• Schedule• Plan Ahead• Evaluate All Siblings• Find the Mom
Prevention of FASD
• Prevent recurrence
• Prevent subsequent exposed pregnancies
FASD Recurrence in Washington D.C.
• Annual birth cohort: 7,893– New FASD cases: 78
• Recurrent cases: 20
• 5 will recur in families with multiple affected children.
• Start Prevention Here
Washington D.C. had 3,157women using alcohol during
pregnancy in 2006
How many are identified?
Heavy uses who drink all 40 weeks of pregnancy = 158.
In Washington D.C. on this date next year, there will be 78 more
people with FASD
Can your program prevent one case of FASD this year?