Marilyn Pierce-Bulger, ANP. Owner/Medical Manager, FASDx Services LLC Founder, Anchorage FASD Diagnostic Team

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1 Marilyn Pierce-Bulger, ANP Owner/Medical Manager, FASDx Services LLC Founder, Anchorage FASD Diagnostic Team

2 Disclosure Marilyn is: Owner/Medical Manager of FASDx Services LLC and founder of the Anchorage FASD Diagnostic Team (formerly at Assets, Inc.) Consultant and affiliate faculty for the University of Alaska, Anchorage Arctic FASD Regional Training Center

3 Presentation Objectives By the end of this session, learners will be able to: 1. Describe terminology as it relates to Fetal Alcohol Syndrome Disorders 2. Identify key physical features linked to prenatal alcohol exposure 3. Identify common primary and secondary disabilities 4. Describe indications for referral for an FASD evaluation 5. Discuss effective intervention strategies for children who have been prenatally exposed 6. Discuss possible role of the CASA

4 Quick Terms Review Fetal Alcohol Syndrome FAS Must meet very specific medical criteria Only 9-10% meet these criteria Facial features form in 3 rd week of gestation Fetal Alcohol Spectrum Disorders (FASDs) FASD is NOT a diagnosis Encompasses FAS, Partial FAS, and other diagnoses such as static encephalopathy and neurobehavioral disorder

Fetal Alcohol Syndrome Diagnostic criteria: Growth deficiency (< 3 rd %ile) Facial features of FAS Evidence of central nervous dysfunction Small head circumference (below

5 Fetal Alcohol Syndrome Diagnostic criteria: Growth deficiency (< 3 rd %ile) Facial features of FAS Evidence of central nervous dysfunction Small head circumference (below -2SD) &/or physical brain abnormalities &/or seizures/neurological findings on exam Reprinted from the 10th Special Report to Congress on Alcohol and Health, NIAAA,

6 UW Lip-Philtrum Guides Now using Facial Photo Analysis Software that allows us to use digital photos and computer curser to accurately measure eye opening and lip circumference

7 Subtle to Obvious Problems Dr. K.L. Jones, Department of Pediatrics, University Hospital. University of California at San Diego. (Reproduced by permission of Dr. Jones). Alcohol can cause physical conditions and birth defects More likely to cause Central Nervous System (CNS) problems. 7

8 Other mild malformations

9 This is a 100% PREVENTABLE disability!

10 Two Ways to Think About Reducing Alcohol-Exposed Pregnancies At risk drinking patterns and Ineffective or no contraception

11 What IS a standard drink? 12 oz size of beer or a wine cooler 8-9 oz of malt liquor 5 oz table wine 1.5oz of 80proof spirits 5% alcohol 7% alcohol 12% alcohol 40% alcohol Depending on type of spirit and recipe, one mixed drink can contain from 1-3 standard drinks Size matters glass size, bottle size, etc.

Key facts: Pre-pregnancy drinking habits are predictive Women who drink prior to pregnancy may be more likely to drink during pregnancy Many women

12 Key facts: Pre-pregnancy drinking habits are predictive Women who drink prior to pregnancy may be more likely to drink during pregnancy Many women continue to drink into the first semester before knowing they are pregnant Unintended pregnancy rate still 49% despite contraceptive option improvements

13 A woman (girl) is more likely to drink excessively if she has a: Partner who drinks heavily History of depression History of childhood physical or sexual abuse Parents & siblings (or other relatives) who have alcohol problems and/or Can "hold her liquor" more than others Begins drinking before age 14

14 Highly variable outcomes are due to these factors When and how much a mother drinks while pregnant Mother s genetic make-up (+age, gravida/parity) Baby s genetic make-up Maternal socioeconomic status (stress & nutrition) 14

15 Prenatal exposure to alcohol can create a brain that has been built differently

16 Central Nervous System Differences Usually not visible on CT or MRI Sensory system (over- or under-sensitivity to noise, light, touch, taste, etc.) Learning (math, reading, writing ) Speech and language (especially pragmatic/social) 16

17 Central Nervous System Differences (cont.) Regulatory challenges (sleeping and/or eating) Executive functions impairments (impulse and emotional control, planning and sequencing, initiation, shifting ) Visual/spatial challenges Memory impairment 17

18 Evidence by Age/Stage

19 Evidence of impact/disability in newborn: Jitteriness and/or tremors Seizures and/or EEG abnormalities Unpredictable and disruptive sleep/wake cycle Decreased vigorous bodily activity Hyperacousis (low hearing threshold) Failure to thrive (given adequate opportunity)

20 Evidence of CNS impact/disability in infants: Weak sucking response/poor feeding Fitful sleeping Irritability Hyperexcitability

21 Evidence of CNS impact/disability: Preschool Language development delays Hearing and vision anomalies are common Short term memory for simple sentences is delayed Not able to attend to multiple stimuli simultaneously and shift attention during task (cognitive flexibility)

22 Evidence of CNS impact/disability: Preschool Poor hand-eye coordination and/or balance Central auditory dysfunction Hyperactivity or impulsivity IQ range can be Intellectual Disability to Average

23 Evidence of CNS impact/disability: School-age Increased difficulty with math, time, money (abstract concepts) Around 3 rd -4 th grade more isolation due to challenges in forming successful peer relationships Difficulty with: inflexible approaches to problem solving organizational skills and task completion short term visual & verbal memory deficits

24 Evidence of impact/disability: School-age Hyperactive and/or impulsive Distractible (maybe due to sensory issue) Inattentive (~80% have ADHD diagnosis first) Uncooperative Exotropia abnormal turning of one or both eyes outward

25 Evidence of impact/disability: Adolescents & Adults After the onset of puberty, facial malformations may not be as distinctive (if has full FAS) Cognitive deficits persist long term Inattention still a problem Poor judgment Distractibility and impulsivity may persist

26 Evidence of impact/disability: Adolescents & Adults Difficulty with identifying and understanding social norms May not understand verbal or nonverbal cues May not have many same age friends; connect better with younger/older age group Most common adaptive behavior problems Failure to consider the consequences of one s own actions Failure often due to bad environmental match at school/work

27 Evidence of impact/disability: Adolescents & Adults Other areas of difficulty include: Self-direction Decision-making Pursuit of goals Financial management Attainment of independence

28 Independence May have life-long needs for support and supervision. Good resource for older students/families is content/uploads/supporting-success-for-adults-with- FASD.pdf 28

29 Important Protective Factors!!! These factors DECREASE the incidence of secondary disabilities: Living in a stable nurturing home for most of one s life - i.e. over 72% of the time Early identification of FASD, especially before the age of 6 Not being a victim of violence Being found eligible for DD services (Streissguth, Barr, Kogan and Bookstein, 1996) 29

30 Secondary Behavioral Symptoms Tires easily, Over activity, Irritability, tantrums Anxious &/or depressed Lonely, isolated Easily manipulated by others Self-harming behaviors Shuts down, flat affect Fearful, withdrawn Avoidant, runs away Frustrated short, fuse, angry Aggressiveness Destructive Talks back, argumentative Remarkable sexual activity Diane Malbin, FASCETS

31 Secondary Disabilities Mental health issues 90% Disrupted school experience 60% Trouble with the law 60% Confinement 50% Inappropriate sexual behavior 50% Alcohol and drug problems 30% (Streissguth, Barr, Kogan and Bookstein, 1996) 31

32 Common Diagnoses that kids have at FASD referral intake Failure to Thrive ADHD Speech & Language Disorder Learning Disabled Reactive Attachment Disorder Posttraumatic Stress Disorder Seriously Emotionally Disturbed Conduct Disorder Oppositional Defiant Disorder Autism/Aspergers Bipolar Borderline Personality Disorder Pervasive Developmental Disorder (no longer used in DSM 5)

33 Quality Diagnosis The first step to success. Early diagnosis helps individual obtain the services they need to succeed. (Alcoholism: Clinical & Experimental Research, May 2007) 33

34 Diagnostic code example 34

35 Potential CASA Role Identification of behaviors or other manifestations of FASD Encourage early referral for diagnosis as indicated Support a foster or birth family with the diagnostic appointment process Assist with follow through on FASD evaluation recommendations Help an older child understand their disability- they are not bad All of our brains work differently

36 FASD Specific Resources: FASDx Services LLC Dylan Conduzzi, Team Coordinator, 907/ Stone Soup Group 907/ NOFAS SAMSHA FASD Center for Excellence CDC

37 Great Online links: Guidance for protecting kids online All About Me book that is available for download at This booklet can then be used to share their story (i.e. strengths and challenges) with teachers, coaches, etc. as desired. What Do I Do? Helping Your Kids Understand Their Siblings FASD My Sibling Has an FASD Can I Catch It?

38 Great Online Links: 8 Magic Keys produced by ASD to help teachers accommodate for the special needs of students with FASD go to anchsch&eid=161 DVD First Impressions as a means to gain a clear understanding of the long term effects of exposure to neglect and domestic violence. Adverse Childhood Experiences (ACES) have long term consequences

39 Only IF time.hot off the Press!

40 Maternal Stress+ Alcohol Alcohol stimulates maternal HPA axis- increased glucocorticoid/cortisol release High maternal cortisol levels exceed the placenta s ability to filter.therefore, fetus also has higher cortisol that influences the fetal brain development Prenatally exposed mouse pups demonstrate a higher and longer cortisol response to stress long term Prenatal alcohol exposed mice + adversity (less nesting materials)=increased negative maternal behaviors Increased depression/anxiety in offspring long term

41 Alcohol-Immune Function-Mental Health Disorder Links Mice who received higher doses of alcohol prenatally have larger spleens (organ involved in immune function) Maternal alcohol shifts balance of cytokines (hormones of the immune system) to PRO inflammatory types Hippocampus has highest # receptors for cytokines in brain (this region associated with learning, memory, stress management) Alcohol is influencing wiring of this area and heightens chronic inflammation effect Increased CNS cytokines activate microglia in brain leading to more mental health disorders in offspring

42 Early Origins of Stress Regulation Looked at effects of antidepressant use in pregnancy HPA axis critical to development of appetite and mood Prenatal alcohol exposure alters HPA axis function throughout the day SSRI exposure appears to increase internalizing behaviors and anxiety NOTE- effects of untreated depression significant so researchers NOT suggesting not treating women who need it

American Academy of Pediatrics 2014 Educational Webinar Series Monday, July 28, 3:00 3:30 pm ET

American Academy of Pediatrics 2014 Educational Webinar Series Monday, July 28, 3:00 3:30 pm ET FETAL ALCOHOL SPECTRUM DISORDERS (FASDS): DETECTION, DISCOVERY, AND DIAGNOSIS PRESENTED BY YASMIN SENTURIAS,