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Assessment & Management of FASD Speakers: Susan Adubato, Ph.D. Denise Aloisio, MD, FAAP MD Champions: Alla Gordina, MD, FAAP Uday Mehta, MD, MPH, FAAP American Academy of Pediatrics, New Jersey Chapter (http://www.aapnj.org/showcontent.aspx?MenuID=999)http://www.aapnj.org/showcontent.aspx?MenuID=999
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Disclosure Information: This activity has been jointly sponsored/ co-provided by Health and Research and Education Trust and AAP/NJ & PCORE. Disclosure Information: Neither Denise Aloisio, MD, FAAP, Susan Adubato, PhD nor HRET, AAP/NJ or PCORE has any significant financial interest or relationship with any manufacture(s) of any commercial products(s) discussed in this educational presentation. HRET-NJHA is an approved provider of continuing education by the New Jersey State Nurses Association, an accredited approver by the American Nurses Credentialing Center’s COA. P#131-5/11-14. This activity is approved for 1.25 contact hours. There is no commercial support for this activity. Accredited status does not imply endorsement by the provider or American Nurses Credentialing Center’s COA of any commercial products displayed in conjunction with an activity. Accreditation Statement: This activity has been planned and implemented in accordance with the Essential Areas and Policies of the Medical Society of New Jersey (MSNJ) through the joint sponsorship of Health Research and Educational Trust (HRET) and AAP/NJ & NJ Pediatric Council on Research and Education. HRET is accredited by MSNJ to provide continuing medical education for physicians. AMA Credit Designation Statement: HRET designates this live activity for a maximum of 1.25 AMA PRA Category 1 Credits TM. Physicians should only claim credit commensurate with the extent of their participation in this activity. 2
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Of all the substances of abuse (including cocaine, heroin and marijuana), alcohol produces, by far, the most serious neurobehavioral effects in the fetus” IOM Report to Congress, 1996 3
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Case 1: Bob 4 Bob presented at the age of 10 years. Bob presented at the age of 10 years. He was adopted from a Russian orphanage at the age of 7 months He was adopted from a Russian orphanage at the age of 7 months He likes to play with his trucks and cars. He is social and interactive and is described as having a great personality He likes to play with his trucks and cars. He is social and interactive and is described as having a great personality He has sleep difficulties, sensory issues and eats small amounts of a limited range of foods. He has sleep difficulties, sensory issues and eats small amounts of a limited range of foods.
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He has features of ADHD, a lot of worries and fears, low frustration tolerance, a high degree of reactivity He has features of ADHD, a lot of worries and fears, low frustration tolerance, a high degree of reactivity He has difficulty with problem solving and abstract concepts. He has difficulty with problem solving and abstract concepts. Prenatal is unknown. He was born at 33 weeks gestation with a birth wt. of 4lbs 6oz Prenatal is unknown. He was born at 33 weeks gestation with a birth wt. of 4lbs 6oz 5 Case 1: continued
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Medical history is unremarkable except for recurrent otitis media requiring tube placement at 18 months. Medical history is unremarkable except for recurrent otitis media requiring tube placement at 18 months. On physical exam: ht and wt both less than 5 th %tile. On physical exam: ht and wt both less than 5 th %tile. Microcephaly with head circumference less than 3 rd %tile. Microcephaly with head circumference less than 3 rd %tile. Face- flattened philtrum, thinned upper lip and small eyes. Face- flattened philtrum, thinned upper lip and small eyes. 6 Case 1: continued
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IQ testing at 7 yrs with WISC-III Verbal 74 Performance 60 Full Scale IQ 65 IQ testing at 7 yrs with WISC-III Verbal 74 Performance 60 Full Scale IQ 65 Updated IQ at 10 years with WISC-IV: verbal comprehension 73, perceptual reasoning index 51, working memory 54, processing speed 56, and full scale IQ 50 Updated IQ at 10 years with WISC-IV: verbal comprehension 73, perceptual reasoning index 51, working memory 54, processing speed 56, and full scale IQ 50 Diagnosis: FAS: alcohol exposure unknown Diagnosis: FAS: alcohol exposure unknown Intellectual DisabilityIntellectual Disability Attention Deficit Hyperactivity DisorderAttention Deficit Hyperactivity Disorder 8 Case 1: continued
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Management has included collaboration with school personnel to address difficulties in the classroom and appropriate placement Management has included collaboration with school personnel to address difficulties in the classroom and appropriate placement Medications for ADHD and Anxiety; he has had side effects to many of the stimulants and anti-anxiety medications. Medications for ADHD and Anxiety; he has had side effects to many of the stimulants and anti-anxiety medications. 9 Case 1: continued
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Brain Regions Affected by Alcohol 10
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Fetal Alcohol Spectrum Disorders is an umbrella term describing the range of effects that can occur in an individual whose mother drank 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. CDC July 2004 11 FASD
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Presentation at different ages- 12
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Infants Poor habituation/sleep-wake cycles Irritability/exaggerated startle Failure to thrive (poor weight gain) Chronic ear infections Difficulty nursing/poor sucking response Poor/superficial bonding with caregivers Developmental delays Speech delays; low muscle tone 13
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Toddlers Continued developmental delays; potty training Distracted easily Colds, infections, other illness Eating (small appetites or sensitivity to food texture) Fidgeting (meal time or other structured event) Often exhausted/irritable due to poor sleep Danger to self-not grasping cause and effect Usually high maintenance-24/7 14
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Pre-Schoolers Delayed speech development Altered motor skills Difficulty following directions Attention deficits/Learning deficits Exaggerated response to sensations (bump into child- she feels she was hit or shoved) Difficulty adapting to changes in environment Caregiver concerns: manipulative, does not understand cause and effect, problems with judgment and memory, disobedience 15
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School Age Bedtime Making and keeping friends Difficulties determining body language and expressions Difficulties separating fact from fantasy Boundary issues Attention problems/impulsive Easily frustrated/tantrums Difficulty understanding cause and effect Caregiver concerns: emotionally volatile, manipulative, unpredictable, increased need for stimulation and excitement, disconnected to feelings/limited empathy 16
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Adolescents Still need limits and protection due to deficits in reasoning, judgment and memory High risk of being drawn into anti social behavior e.g. stealing, lying, drugs-”thrill seekers” Unable to distinguish between friends/enemies; impaired judgment for decisions; faulty logic Struggle to accept their own disability while trying to prove ability to be independent Often obsessed by primal impulses-sex, fire setting Lacks remorse Negligent of normal hygiene Extremely vulnerable to suggestions in movies, TV High risk for school dropout; academic ceiling reached: usually 4 th grade for reading and 3 rd grade for math Unable/unwilling to take responsibility for actions; egocentric 17
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Adults* Moral chameleons Often exhausted and irritable – poor sleep Vulnerable to anti-social behavior – find structure and supervision in criminal justice system Unlikely to follow safety rules – fire hazards, vehicles, basic life needs Social/sexual/financial exploitation; social isolation Lacks ability to manage money Incapable of taking daily meds Vulnerable to panic, depression, suicide (Huggins, et.al-2008:23%), psychosis Need sheltered environment Think younger- 2/3 chronological age *Chudley, et al(2007): Adults with FASD have higher rates of social problems, executive functioning and psychopathology when compared to general population. 18
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Case 1: Ted Presented for developmental evaluation at the age of 8 years Presented for developmental evaluation at the age of 8 years History of behavioral difficulties History of behavioral difficulties Was irritable as a baby, had sleep problems, didn’t grow well and as a toddler he was very active Was irritable as a baby, had sleep problems, didn’t grow well and as a toddler he was very active He was friendly and social but often impulsive He was friendly and social but often impulsive He was asked to leave three different preschool programs because of difficulties following rules and being disruptive He was asked to leave three different preschool programs because of difficulties following rules and being disruptive He was also aggressive at times He was also aggressive at times 19
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In Kindergarten, he had difficulty learning his letters, he could not sit in group for story time and was disruptive In Kindergarten, he had difficulty learning his letters, he could not sit in group for story time and was disruptive He threw things when upset and had injured another student on the playground He threw things when upset and had injured another student on the playground His pediatrician recommended further assessment His pediatrician recommended further assessment Case 1: continued 20
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More difficulties for Ted Ted didn’t seem to learn from common discipline techniques, and would repeat the same wrong behaviors over and over Ted didn’t seem to learn from common discipline techniques, and would repeat the same wrong behaviors over and over He had no friends and was not allowed to go on the class trip He had no friends and was not allowed to go on the class trip First grade was even worse and three months into the year he was evaluated by the school team and placed in a smaller class First grade was even worse and three months into the year he was evaluated by the school team and placed in a smaller class 21
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Ted’s Assessment Ted presented to the Developmental Pediatrician when previous history was obtained Ted presented to the Developmental Pediatrician when previous history was obtained Birth history was obtained and Ted’s mother admitted to drinking some beer regularly during pregnancy, she also smoked cigarettes and was on medication for a respiratory infection Birth history was obtained and Ted’s mother admitted to drinking some beer regularly during pregnancy, she also smoked cigarettes and was on medication for a respiratory infection Physical exam revealed some facial features including: small eyes, flat philtrum and thin upper lip. Head circumference was less than the 5% Physical exam revealed some facial features including: small eyes, flat philtrum and thin upper lip. Head circumference was less than the 5% 22
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Problem Domains of Individuals with Prenatal Alcohol Exposure Cognition/Intellectual Functioning Activity and Attention (ADHD) Hyperactivity Focusing, encoding, shifting Learning and Memory Auditory, spatial, design, and narrative memory Working memory Intrusion, perseveration, false-positive errors Comprehension, math reasoning 23
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Language Social communication Word comprehension, naming ability, articulation Expressive and receptive language skills Motor Abilities Fine and gross motor dysfunction Delayed motor development Speed/precision, grip strength Processing Abilities Spatial memory, processing of visual and auditory information Difficulties in motor control and functioning Problem Domains of Individuals with Prenatal Alcohol Exposure 24
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Other Neuropsychological Abilities/Executive Functioning Behavioral and emotional regulation-impulsivity, lability Planning/organization Abstract thinking/judgment Sensorimotor Integration Social Skills and Adaptive Behavior Mental Health Issues Problem Domains of Individuals with Prenatal Alcohol Exposure 25
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Case 2: Debbie Debbie presented at 12 years with a diagnosis of FAS, ADHD and Intellectual Disability Debbie presented at 12 years with a diagnosis of FAS, ADHD and Intellectual Disability She is rough with the family pets and even killed two of them She is rough with the family pets and even killed two of them She steals items from other children in the family and school She steals items from other children in the family and school The family has to lock all the doors to rooms in the house The family has to lock all the doors to rooms in the house 27
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Medical history significant for being born extremely prematurely at 24 weeks gestation Medical history significant for being born extremely prematurely at 24 weeks gestation There was known exposure to alcohol prenatally There was known exposure to alcohol prenatally She had an Intraventricular hemorrhage and congenital cardiac defect ASD repaired at 4 years. She had an Intraventricular hemorrhage and congenital cardiac defect ASD repaired at 4 years. She has asthma treated with medications She has asthma treated with medications There was a question of seizures but EEG was normal There was a question of seizures but EEG was normal Case 2: continued 28
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On physical exam, height and weight have been consistently below the 3 rd %tile. On physical exam, height and weight have been consistently below the 3 rd %tile. Head circumference less than 3 rd %tile Head circumference less than 3 rd %tile Facial features consistent with FAS Facial features consistent with FAS Case 2: continued 29
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IQ IQ was done at 12 years old with the WISC- IV: verbal comprehension index 59, Perceptual reasoning index 49, working memory index 65, processing speed index 70, Full Scale IQ is 51 31
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Management involves: Behavioral family services in home Behavioral family services in home Medications: Strattera, risperdone recently added, Buspar Medications: Strattera, risperdone recently added, Buspar Family is involved with services through their church. Family is involved with services through their church. Case 2: continued 32
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Clinical Implications of Impairments for Individuals with FAS/FASD 33
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Poor judgment and decision making, which increases susceptibility to being victimized Attention deficits, which increase distractibility and lack of focus Arithmetic disability, which leads to difficulty in handling money Memory impairment, which makes learning from experience difficult Difficulty abstracting, which makes it difficult to understand the consequences of one’s behavior Clinical Implications of Impairments for Individuals with FAS/FASD 34
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Clinical Implications of Impairments for Individuals with FAS/FASD Disorientations of time and space, which complicate accurately perceiving social cues, missing appointments Impulsivity and poor self-regulation, which decreases tolerance for frustration, and makes them quick to anger Poor habituation which results in drowning in stimulation, emotional overload, shutting down and behaving irrationally Perseveration which leads to doing the same thing over and over again Difficulty with self reflection which leads to not being able to express ones’ needs and not getting help 35
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Secondary Disabilities Resulting from the Primary Disabilities of Individuals with FAS/FASD 60% have trouble with the law 50% will be confined in prison,mental institutions, and treatment centers 35% have alcohol and/or drug problems -Streissguth 2004 36
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Secondary Disabilities Resulting from the Primary Disabilities of Individuals with FAS/FASD 61% have disrupted school experience 49% exhibit inappropriate sexual behavior Other: joblessness, homelessness, inability to demonstrate effective caretaking and parenting, and increase potential for victimization, need for lifelong supervision Streissguth 2004 37
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Universal Protective Factors Early diagnosis Early diagnosis Stable, nurturing home environment Stable, nurturing home environment No violence/victimization No violence/victimization Early intervention services Early intervention services DDD services DDD services Streissguth, 2004 Streissguth, 2004 38
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Differential Diagnosis of CNS and Behavioral Feature Found in Fetal Alcohol Syndrome Dan Dubovsky-FASD Center of Excellence, 2011 SyndromeSimilarities to FASDifferences from FAS Fragile X syndrome Attention problems, hyperactivity, speech deficits Hand flapping, poor eye contact, more severe intellectual disability, autism Williams syndrome Mild prenatal growth deficiency, microcephaly, mild intellectual disability, short palpebral fissures, upturned nose, long philtrum Aortic or pulmonary stenosis, hoarse voice, high relative language ability Noonan syndrome Short stature, mild intellectual disability, ptosis, upturned nose Webbed neck, low posterior hairline, shield chest, pulmonic stenosis, cryptorchidism 22q11 deletion syndrome Learning disabilities, IQ range from low normal to mild intellectual disability, speech deficits 10% with psychiatric disorders, strong social skills 39
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Common Disorders Identified with FASD Anxiety Asperger’s Disorder Attention Deficit Hyperactivity Disorder (ADHD) Autism Borderline Personality Disorder Conduct Disorder Depression Eating Disorders Learning Disability Oppositional-Defiant Disorder Post Traumatic Stress Disorder (PTSD) Reactive Attachment Disorders Receptive-Expressive Language Disorder 40
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Similarities Between FASD and Autism Developmental disabilities that affect normal brain function, development, and social interaction Difficulty developing peer relationships Difficulty with the give and take of social interactions Impairments in the use and understanding of body language to regulate social interaction Abnormal sensitivity to sensory stimuli, including an over- or under-sensitivity to pain 41 Dan Dubovsky-FASD Center of Excellence, 2011
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FASD Can express a range of emotion Microcephaly more common Superficially social Autism Restricted in emotional expression Macrocephaly more common Difficult or impossible to relate to others in a meaningful way Major Differences Between FASD and Autism 42 Dan Dubovsky-FASD Center of Excellence, 2011
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Major Differences Between FASD and Autism FASD Difficulty in verbal receptive language; expressive language is more intact as the person ages Difficulty in verbal receptive language; expressive language is more intact as the person ages Repetitive body movements not seen; may have fine and gross motor coordination and/or balance problems Repetitive body movements not seen; may have fine and gross motor coordination and/or balance problems Autism Difficulty in both expressive and receptive language Difficulty in both expressive and receptive language Repetitive body movements e.g., hand flapping, and/or abnormal posture e.g., toe walking Repetitive body movements e.g., hand flapping, and/or abnormal posture e.g., toe walking 43 Dan Dubovsky-FASD Center of Excellence, 2011
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Possible Misdiagnoses and/or Co-occurring Disorders for Individuals with FASD ADHD ADHD Oppositional Defiant Disorder Oppositional Defiant Disorder Depression Depression Bipolar Bipolar 44 Dan Dubovsky-FASD Center of Excellence, 2011
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Comparing FASD, ADHD, & ODD FASDADHDODD Behavior Underlying cause for the behavior May or may not take in the information Cannot recall the information when needed Cannot remember what to do Takes in the information Can recall the information when needed Gets distracted Takes in the information Can recall the information when needed Chooses not to do what they are told Intervention for the behavior Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control, limits, and consequences 45 Dan Dubovsky-FASD Center of Excellence, 2011
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Comparing FASD, Adolescent Depression and Adolescent Bipolar Disorder FASD Adolescent Depression Adolescent Bipolar Disorder Acting out, antisocial behavior Misreading social cues; difficulty communicating thoughts and feelings Depression Mania or hypomania Provide a mentor to model positive behaviors; utilize a lot of role playing Psychotherapy to address issues; protect from harm; medication (antidepressants) with careful monitoring Psychotherapy to address issues; protect from harm; medication (mood stabilizer) 46 Dan Dubovsky-FASD Center of Excellence, 2011
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Managing Co-existing Disorders ADHD ADHD Mood Disorders Mood Disorders Oppositional Defiant Disorder Oppositional Defiant Disorder The role of medications The role of medications Start low, go slowStart low, go slow Monitor closelyMonitor closely May have opposite effectMay have opposite effect 47
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Reconceptualizing the Behavior of the Individual with FAS Professionals, family members, and caretakers need to reconceptualize how we view the behavior of an individual with FAS/FASD From seeing To understanding Won’t Can’t Lazy Tries hard Lies Fills in Doesn’t try Exhausted or can’t start Doesn’t care Can’t show feelings Refuses to sit still Over stimulated Fussy, demanding Oversensitive Resisting Doesn’t “get it” 48
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You Can Make A Difference ! Think:“Stretched Toddler”. Remember: “Individuals with FASD will always need an external brain.” Acknowledge: Interventions must be useful to, and usable by the individual in order to be an intervention. Foster: Inter-dependence. Reflect: Respect. Promote: Self-worth. 49
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Support:Self-esteem. Understand:That FASD is not “Chicken Pox.” You can’t catch it and it never goes away. Shift:From a “non-compliance” model to a “non- competence” model. Accept: Individuals with FASD do the best they can with what they’ve got at that time. Believe:You can make a difference. You Can Make A Difference ! 50
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Best Practice One prevention model contains seven basic components, form the acronym SCREAMS: Structure: a regular routine with simple rules and concrete, one step instruction, paired with examples Cues: verbal, visual, or symbolic reminders can counter the memory deficits Role models: family, friends, TV shows, movies that show healthy behavior and life styles Environment: minimized chaos, low sensory stimulation, modified to meet individual needs. Attitude: understanding that behavior problems are primarily due to brain dysfunction Medications: most often the right combination of meds can increase control over behavior Supervision: 24/7 monitoring may be needed for life due to poor judgment, impulse control. Teresa Kellerman, Director of the FAS Community Resource Center, Tucson Arizona 51
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New Jersey Regional Diagnostic Centers Six Regional Diagnostic treatment and educational centers were established in New Jersey in 2002. Six Regional Diagnostic treatment and educational centers were established in New Jersey in 2002. Identify Screen Diagnose Case Management Referral Education Outreach Beintheknownj.org 52
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Comprehensive Assessment and Management of Individuals with FAS/FASD Team approach: Multi-disciplinary assessment Psychosocial history Physician Disciplines (Mental health, speech, OT/PT, LD) Parents/caregivers Social service agencies (DDD, SS, Child protective, drug treatment centers) Case management Diagnosis Early intervention and tracking Stable home environment Medication Case manager/mentor in school/home/communities Support services-family community, educational, vocational Supervised housing/residential facility Special education and vocational rehabilitation 53
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POLICY STATEMENTS Since 1966, AMA and APA have recognized alcoholism as disease AMA, AAP, ACOG, CDC, NIAAA, March of Dimes, and NOFAS all have policies regarding drinking during pregnancy AMA urges physicians to be alert to possible alcohol related problems in women and to screen all patients for possible alcohol abuse and dependence. 55
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Be good to me... Stay alcohol free! A few drinks can Last forever No safe time. No safe amount. No safe alcohol. Period …. NIAAA/NOFAS 56
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Astley, S., Aylward, E., Carmichael-Olson, H., et. al. (2009). Magnetic resonance imaging outcomes from a comprehensive magnetic resonance study of children with Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental research, 33 (10): 1671-1689. Hellemans, KS, Silwowska, JH, Verma, P., and Weinburg, J. (2010). Prenatal alcohol exposure : fetal programming and later life vulnerability to stress, depression, and anxiety disorders. Neuroscience Biobehavior Review, 34, (6),791-807 Larkby, CA, Goldschmidt, L, Hanusa, BH and Day, N. (2011). Prenatal alcohol exposure is associated with conduct disorder in adolescence: Findings from a birth cohort. Journal of the Academy of Child & Adolescent Psychiatry, 50(3),March: 262-271. Li, L Coles, CD., Lynch, ME, et al.,(2009). Voxelwise and skeleton-based region of interest analysis of fetal alcohol syndrome and fetal alcohol spectrum disorders in young adults. Human Brain Mapping, PMID: 19278010. Mattson, S, and Riley, E. (2011). The quest for a neurodevelopmental profile of heavy prenatal alcohol exposure. Research & Health, 34 (1), 51-56. Wetherill, L and Foroud, T (2011). Understanding the effects of prenatal alcohol exposure using three dimensional Facial Imaging. Alcohol Research & Health, 34 (1),38-42. Feldman, HS, Jones, KL, Lindsay,S, Slyman,D., Klonoff-Cohen H, Kao,K., Rao, Chambers,C. (2012). Patterns of prenatal alcohol exposure and associated non-characteristic minor structural malformations: A prospective study. Already on-line. To be published: Am J Med Part A 155: 2949-2955 (April) WHO Factsheet #349 (2011). References 57
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American Academy of Pediatrics, New Jersey Chapter: http://www.aapnj.org/ http://www.aapnj.org/ National Organization on Fetal Alcohol Syndrome: http://www.nofas.org/ http://www.nofas.org/ Fetal Alcohol Spectrum Disorder Center of Excellence: http://www.fasdcenter.samhsa.gov/ http://www.fasdcenter.samhsa.gov/ Centers for Disease Control –National Center on Birth Defects and DDs: http://www.cdc.gov/ncbddd/features/birthdefects-dd-keyfindings.html http://www.cdc.gov/ncbddd/features/birthdefects-dd-keyfindings.html Fetal Alcohol Disorders Society: http://www.faslink.org/ http://www.faslink.org/ Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc.: http://www.fascets.org/ http://www.fascets.org/ Be In The Know NJ: http://beintheknownj.org/ http://beintheknownj.org/ Article: “Researchers quantify the damage of alcohol by timing and exposure during pregnancy” http://www.eurekalert.org/pub_releases/2012-01/ace-rqt010812.php http://www.eurekalert.org/pub_releases/2012-01/ace-rqt010812.php Websites 58
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Alcohol Research and Health, Volume 34(1), 2011-FASD Journal of Psychiatry and Law, Volume 38(4), Winter 20120 (one of 2 volumes on FASD) 59 Full Journals Books Prenatal alcohol use and FASD: Diagnosis, assessment and new directions in research and multimodal treatment- Bentham Science E book edited by Adubato and Cohen- September, 2011 Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD (sic) – edited by Riley, et.al., 2011 Wiley-Blackwell Publishers Prevalence of Fetal Alcohol Spectrum Disorders (sic) FASD: Who is Responsible? – edited by Clarrin, et.al., 2011; Wiley-Blackwell Publishers
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60 Contact Information: Speakers- Susan Adubato, PhD - adubatsu@umdnj.eduadubatsu@umdnj.edu Denise Aloisio, MD, FAAP - DAloisio@meridianhealth.comDAloisio@meridianhealth.com MD Champions- Alla Gordina, MD, FAAP- drgordina@globalpediatrics.netdrgordina@globalpediatrics.net Uday Mehta, MD, MPH, FAAP- UMehta@childrens-specialized.orgUMehta@childrens-specialized.org
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Thank you! An evaluation will be sent to all participants on Wednesday, March 21, 2012. Please fill out the entire evaluation for CME/CNE credits. 61
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