Yasmin Suzanne N. Senturias, M.D. University of Louisville Department of Pediatrics Co-investigator, CDC Regional Traini

1. Yasmin Suzanne N. Senturias, M.D. University of Louisville Department of Pediatrics Co-investigator, CDC Regional Training Centers Grant on Fetal Alcohol Spectrum Disorders Centers for Disease Control and Prevention (CDC) - 1U84DD000443. Fetal Alcohol Spectrum Disorders (FASD) Initial Evaluation, Diagnosis and Counseling: Delivering the diagnosis and intervention plans  Thank you very much for the very kind introduction. It is an honor to be here. I am very excited to present on this very important topic to my colleagues here in UK.Thank you very much for the very kind introduction. It is an honor to be here. I am very excited to present on this very important topic to my colleagues here in UK.

2. There is nothing more powerful than an idea whose time has come. Victor Hugo Victor Hugo once said, there is nothing more powerful than an idea whose time has come. And it is time for us to talk about fetal alcohol spectrum disorders.Victor Hugo once said, there is nothing more powerful than an idea whose time has come. And it is time for us to talk about fetal alcohol spectrum disorders.

3. Objectives 1. To discuss the diagnostic criteria for fetal alcohol syndrome and discuss some features of the other fetal alcohol spectrum disorders, particularly alcohol-related neurodevelopmental disorder 2. To discuss how clinicians can apply the diagnostic criteria for FAS in the clinical setting (including how to assess growth, facial criteria and CNS abnormalities) 3. To demonstrate, using role play, how to deliver the diagnosis and discuss plans for management.

4. Fetal alcohol spectrum disorders is a term that describes 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. Fetal alcohol spectrum disorders is a term that describes 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.

5. The 4 Syndromes in FASD Fetal Alcohol Syndrome (FAS)-About 1 in 650 to 1 in 5,000 Partial FAS Alcohol-Related Neurodevelopmental Disorders Alcohol-Related Birth Defects ALL FASDs: Estimates only (About 1 per 100 live births) Fetal alcohol syndrome refers to the children who have the characteristic facial features , growth deficiency and central nervous dysfunction, in the background of alcohol use during pregnancy. Alcohol related neurodevelopmental disorder is a term that was created by the Institute of Medicine to refer to neurodevelopmental abnormalities of a complex pattern of behavior or cognitive abnormalities or a complex pattern of behavior or cognitive abnormalities that cannot be explained by family background or environment alone. Partial FAS refers to those children who have some of the facial features of FAS, with some growth retardation, neurodevelopmental abnormalities, or CNS abnormalities, without meeting full criteria. The alcohol related birth defects mentioned here include things as various as heart abnormalities, renal anomalies, ��etc��..Fetal alcohol syndrome refers to the children who have the characteristic facial features , growth deficiency and central nervous dysfunction, in the background of alcohol use during pregnancy. Alcohol related neurodevelopmental disorder is a term that was created by the Institute of Medicine to refer to neurodevelopmental abnormalities of a complex pattern of behavior or cognitive abnormalities or a complex pattern of behavior or cognitive abnormalities that cannot be explained by family background or environment alone. Partial FAS refers to those children who have some of the facial features of FAS, with some growth retardation, neurodevelopmental abnormalities, or CNS abnormalities, without meeting full criteria. The alcohol related birth defects mentioned here include things as various as heart abnormalities, renal anomalies, ��etc��..

6. FOCUS: Fetal Alcohol Syndrome Facial dysmorphia: small palpebral fissures (10th %ile or below), smooth philtrum*, thin vermilion border* Growth deficiencies: weight/length-at or below the 10th percentile (any measurement from birth to present time) CNS Abnormality: Structural, Neurological or Functional (+)/(-) Maternal alcohol use in pregnancy (history is not always available) CDC Guidelines for Referral and Diagnosis, 2004 (*Rank 4 or 5 on Univ of Washington Lip-Philtrum Guide) So what is the criteria for the diagnosis of FAS?...... When a patient does not feel full criteria for FAS, but there was significant alcohol exposure in utero, he/she may meet criteria for other FASDs.. However, for the other FASDs, there should be documentation of alcohol exposure in utero.So what is the criteria for the diagnosis of FAS?...... When a patient does not feel full criteria for FAS, but there was significant alcohol exposure in utero, he/she may meet criteria for other FASDs.. However, for the other FASDs, there should be documentation of alcohol exposure in utero.

7. Child with Fetal Alcohol Syndrome

8. Source: www.fasdpn.org

9. Palpebral Fissure Measurement

10. Growth Retardation At or below 10th percentile

11. CNS Abnormality Structural Head circumference at or below 10th percentile Clinically significant abnormalities on neuroimaging Neurological Seizures Focal deficits Functional Cognitive/developmental deficits or discrepancies Executive functioning deficits Motor functioning delays Problems with attention or hyperactivity Problems with social skills Others: Sensory problems, pragmatic language problems,memory deficits,etc.

12. Major Effects of Alcohol by Trimester

13. FAS and the Brain Prenatal alcohol exposure causes brain damage. Alcohol can damage the developing brain in a number of ways. The brain may be smaller than normal or may have missing or underdeveloped portions, such as the corpus callosum. The picture on the right is an autopsy photo of an infant with FAS so severe that it was fatal. Most people with FAS do not have brains that are this dramatically affected.Prenatal alcohol exposure causes brain damage. Alcohol can damage the developing brain in a number of ways. The brain may be smaller than normal or may have missing or underdeveloped portions, such as the corpus callosum. The picture on the right is an autopsy photo of an infant with FAS so severe that it was fatal. Most people with FAS do not have brains that are this dramatically affected.

14. Areas of Brain Affected By Prenatal Alcohol Exposure Frontal Lobes impulses and judgment. The prefrontal cortex, controls what are called the Executive Functions 

15. Alcohol effects on corpus callosum

16. Alcohol�s effect on hippocampus Alcohol can change the fibers and cause cell reduction Involved in memory Deficits in spatial memory Mood control center Inappropriate responses to emotions, such as anger Source: Southeastern FAS RTC

17. Kindergarten � sixth Grade Gullible, easily influenced by others Memory loss and retrieval problems. Needs things repeated multiple times and still may not retain information. Lying, stealing, or disobedient Problems separating fantasy from reality, having a different perception of reality Temper tantrums Impulsive Delayed physical, academic, and/or social development Silence, retreating from situations Inappropriate social behavior

18. Middle School/Junior High Self-centered (act younger than stated age) Criminal activity Poor reasoning skills Cognitive problems from previous section do not improve (memory, recall, reality, etc.) Poor motivation, low self-esteem, depression Academically tops out in one or more subjects Sexually active, drug or alcohol use Lacks time management skills, no concept of time

19. A person with FASD or other brain differences may have wide variances in their abilities. This is an example from the Vineland Adaptive Behavior Scales, which is an assessment of developmental age. These scored belong to an 18 year old woman with FASD. Her expressive language is higher than her chronological age, so she speaks very well. Her reading ability is at age 16, which is close to typical. However, her comprehension level is that of a six year old. Her vocabulary is good and she can read well, but she doesn�t understand what she is reading. Her emotional maturity is also at the level of a six year old. When she responds to situations like a first-grader, that is because she is acting according to her developmental age in that area. �A person with FASD or other brain differences may have wide variances in their abilities. This is an example from the Vineland Adaptive Behavior Scales, which is an assessment of developmental age. These scored belong to an 18 year old woman with FASD. Her expressive language is higher than her chronological age, so she speaks very well. Her reading ability is at age 16, which is close to typical. However, her comprehension level is that of a six year old. Her vocabulary is good and she can read well, but she doesn�t understand what she is reading. Her emotional maturity is also at the level of a six year old. When she responds to situations like a first-grader, that is because she is acting according to her developmental age in that area. �

20. Secondary Disabilities Mental health problems-more than 90% Alcohol and other drug problems-35% of adolescents and adults Disrupted school experiences->60% Juvenile justice 60% Juvenile confinement 40% Streissguth, A. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Brookes Publishing. ISBN 1-55766-283-5 Left untreated, secondary disabilities are rampant. These are individuals whose primary brain disabilities have not been recognized, and thus no accommodations apparently have been provided.Left untreated, secondary disabilities are rampant. These are individuals whose primary brain disabilities have not been recognized, and thus no accommodations apparently have been provided.

21. Co-occuring conditions in FASD

22. Protective Factors Living in a stable and nurturing home for over 72% of life Being diagnosed with FAS before age six Never having experienced violence Remaining in each living situation for at least 2.8 years Experiencing a "good quality home" (meeting 10 or more defined qualities) from age 8 to 12 years old Having been found eligible for developmental disability (DD) services Having basic needs met for at least 13% of life Having a diagnosis of FAS (rather than another FASD condition) Streissguth, A. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Brookes Publishing. ISBN 1-55766-283-5.

23. Intervention Strategies Appropriate developmental services Appropriate educational services (8 Magic Keys, Socio-cognitive habilitation/math interactive learning experience) Neurobehavioral reframing/paradigm shift/parent coaching Advocacy in multiple settings, specifically SCHOOL and WORKPLACE Emphasizing strengths Treatment of co-occurring conditions (including medication management) Social skills training

24. Demonstration How to assess the palpebral fissures using the palpebral fissure ruler How to assess the upper lip and philtrum using the lip-philtrum guide

25. Role Play Delivery of the diagnosis and treatment plan to the family of a child with fetal alcohol syndrome

26. Conclusions Fetal alcohol syndrome is diagnosed by the triad of facial dysmorphia, growth deficiency and CNS abnormality. Facial features can be assessed objectively by measuring the palpebral fissure and lip-philtrum guide. Children who were exposed to alcohol in utero may have central nervous system abnormalities in the absence of facial dysmorphia or growth deficiency. There are strategies that can help children with fetal alcohol spectrum disorders that include environmental accommodations for brain differences/CNS dysfuncftion.

27. Acknowledgements SEFASRTC is a Centers for Disease Control and Prevention (CDC) sponsored project based at Meharry Medical College Department of Family and Community Medicine. Faculty collaborators are from Morehouse School of Medicine National Center for Primary Care, Tennessee State University Department of Physical Therapy, University of Louisville Department of Pediatrics/ Weisskopf Child Evaluation Center, and the University of Tennessee Department of Social Work.