FASD: A Disorder Pediatricians can Diagnosis and Prevent!

Transcription

1 FASD: A Disorder Pediatricians can Diagnosis and Prevent! Kathleen Tavenner Mitchell, MHS, LCADC Vice President and National Spokesperson National Organization on Fetal Alcohol Syndrome

2 Faculty/Presenter Disclosure Kathleen Tavenner Mitchell has no financial relationships with the manufacturer(s) of commercial services discussed in this CME activity No unapproved/investigative use of a commercial product/device in this presentation.

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4 Prenatal Alcohol Exposure: Relevance to Pediatric Practice Most common preventable cause of intellectual disability and behavior problems likely seen in most practices. Effects can be lifelong. Alcohol is a teratogen. Of all the substances of abuse, including cocaine, heroin, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus. Institute of Medicine, 1996 Can an contribute to a range of growth deficits and structural anomalies (FASD) *AAP Webinar, 2017

5 Lifetime Cognitive, Behavioral, Emotional and other Problems Appear Across a Continuum of Severity Cognition Behavior Social Skills Speech and Language Mild Mild Mild Mild Reduced IQ, Learning Disabilities, poor insight and judgment, executive functioning, attention, short term memory and processing speed Aggression, temper outbursts, impulsivity Poor boundaries, difficulty reading facial expressions or body language Pragmatic speech, receptive and expressive language Severe Severe Severe Severe Emotion Mild Anxiety, depression, mood disorders Severe Motor Skills Mild Fine, gross motor skills impairment Severe Lockhart, P. 2006

6 Preventing FASD may prevent many other health consequences 35 Year Old Woman (PAE) Systemic lupus Idiopathic thrombocytopenia purpura Chronic migraine Antiphospholipid syndrome Fibromyalgia Hiatial hernia Pituitary microdenoma Hysterectomy Prolapsed bladder Depression Anxiety Learning disabilities Poor executive functioning

7 Alcohol & Sudden Infant Death Syndrome (SIDS) Alcohol use while pregnant is a leading causal factor in both fetal and infant death. Ken Warren, PhD, Acting Director, NIAAA NOFAS interview,

8 About NOFAS Mission: NOFAS prevents FASD, raises awareness about the risk of prenatal alcohol exposure, and supports individuals, families, and communities living with FASD. Vision: The vision of NOFAS is a global community free of alcohol-exposed pregnancies and a society supportive of individuals already living with FASD.

9 NOFAS Clearinghouse YouTube Videos crisis calls & questions Media Outreach Training Requests and Curriculum Development & Dissemination Students and professionals International and State Resource Directory Policy and Advocacy Alcoholfreepregnancy YouTube Channel 200 interviews

10 More than fifteen tribal leaders and respected elders have served on the NOFAS Board of Directors since Public awareness campaigns, teen peer to peer projects, NOFAS CAP (curricula for addictions professionals), Circle of Hope, Women in Recovery Summits National Indian Health Board, National Congress of American Indians and National Indian Gaming Association Navajo Nation, Cherokee Nation, Standing Rock Sioux Tribe, Oneida Nation, Mississippi Choctaw, Nez Perce, Minnesota Ojibwa

11 2013 NOFAS Report: Implementing CHOICES (CDC Screening/BI) in clinical settings that serve American Indian and Alaska Native women of childbearing age CHOICES has proven effective in reducing alcoholexposed pregnancies: Screening Brief intervention Motivational interviewing Preconception health counseling

12 American Indian Healthcare Clinics Focus Groups: What is your sense of the problem of FASDs in Indian country or among specific tribes or tribal populations? FASDs are an overwhelming problem that is being lost among competing priorities and lack of funding. FASDs are not on the radar as much as they should be. Some communities are not ready to talk about FASDs. Discussing FASDs is a complicated issue: there is no cure, people are overwhelmed with competing issues, shame, denial, and guilt are involved Prevention of and issues related to FASDs need to be addressed in a model that provides care at appropriate frequencies and for the needed duration. The Collaborative Circle of Care model has worked well in tribal settings. Transition from disease intervention to disease prevention focused care is evolving, but slowly. Changing behavior around alcohol consumption is among the most challenging, if not the most challenging, of prevention objectives, making FASDs a lower priority. Varies widely among tribes in part based on resources. Lack of diagnostic practices makes scope of problem unknown. Some tribes resist diagnosis of FAS because they are lacking services to deal with the needs revealed by the diagnosis.

13 Utilize a state-of-the-art, multidisciplinary, multisite, international approach to: Develop better ways to recognize and detect the full range of effects from prenatal exposure to large or moderate amounts of alcohol SCIENCE to PRACTICE: NOFAS is the education arm of CIFASD Research

14 Why I do what I domeet Karli

15 1977 Karli, Danny and Erin A Happy Little Hippy Family

16 The BLESSING: 100% Alcohol B Free!!

17 My Child has FAS: The Scarlet Letter A lifetime of public shaming, judgment and blaming: (individuals living with FASD, mother, father, sisters, brothers, grandmother, grandfather, granddaughters, grandsons, nieces, nephews, aunts, cousins, son-in-laws, daughter-in-laws, their in-laws, etc.) Mitchell, K. 2009

18 NOFAS Circle of Hope International Groups Peer mentoring Support Speakers Bureau Newsletters Private Facebook site for birth moms Webinars

19 Circle of Hope: Birth Mothers Pregnancies Average Number of Pregnancies: 3 (2.72) Pregnancies Average Number of Living Children: 2 (2.24) Children Average Age of Mother When She Was Pregnant with Her 1 st Child: 22 (21.77) Years Old Her 2 nd Child: 25 (25.43) Years Old Her 3 rd Child: 28 (28.47) Years Old The NOFAS 2012 BMN Survey/ n=93

20 Why? I am a social drinker, drank before I knew I was pregnant and stopped when I found out. 28.1% I knew I shouldn t have but I couldn t stop. 21.9% Doctor never said I shouldn't t drink. 21.9% I was an addict in active addiction. 18.8% Doctor said I should drink. 9.4% I was an addict and ashamed. 9.4% I am an alcoholic, drank before I knew I was pregnant, and stopped when I found out. 6.3% Thought it was ok to drink, just not excessively. 3.1% I was an addict and could not get into treatment. 3.1%

21 FASD can happen to anyone-but- a woman with a substance use disorder (SUD) is at higher risk for having a child with an FASD Women that use other drugs (prescription or illegal) often use alcohol Women do not cause addiction to alcohol or other drugs (genetic susceptibility/metabolic) Women with SUD often grew up in addicted households and as a result have a characteristic behavioral profile. Women that grew up in families with addiction are fearful of authority figures (pediatricians) Women that smoke cigarettes during pregnancy often use alcohol as well

22 Mothers care about what you think of them. They want you to like them. The fear of judgment or perception of being devalued is one of the reasons that women may not disclose that they drank during their pregnancy. Having an empathic approach that encourages trust can put a mother at ease. Self-disclosure (when appropriate) or telling stories about others that have dealt with FASD in successful ways can help break down shame and barriers to disclosure.

23 Conversations with Mothers Be non-judgmental in approaching topic of alcohol/drug abuse or dependency. Stick to the facts and provide information and education in a matter of fact manner. Inform her that in order for you to provide the best care possible for her child, you must know all of the facts about the pregnancy and possible exposures. Remind her that you care about her child and HER and want the best health possible for the entire family.

24 It s Not the End of the World to have a Child with an FASD Words matter: carefully select your words and your tone Don t use wording like FASD Kid (rather child with an FASD) Help the parents to understand the importance of an early diagnosis and intervention Inform the parents about resources and supports available in their community (nofas.org)

25 Practice Compassion They are doing the best that they can, with the tools they have been given. Be Gentle * Ask, then listen to their story You may be the only person that CAN help move them to change Never under estimate the power of giving just 2 minutes of your time ~ let them know they matter

26 Stamp Out Stigma Campaign Join the campaign! Join NOFAS and the NOFAS Circle of Hope to stop the stigma of birth mothers of children with FASD and the stigma of all individuals and families living with the disorders.

27 De stigmatizing FASD Public Health Messages 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. Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual who was exposed to alcohol before birth. FASDs are caused by a woman drinking alcohol during pregnancy. FASDs can occur in an individual who was exposed to alcohol before birth.

28 FASD Prevention and Identification Resources ACOG: CDC: AAP: PediaLink online training course AAP FASD Toolkit

29 Acknowledgments The slides referenced *AAP Webinar were used with permission from the AAP and the Improving Fetal Alcohol Spectrum Disorders Prevention and Practice through National Partnerships collaborative. The following experts helped in developing those slides: David Wargowski, MD, Kenneth L Jones, MD, Prachi Shah, MD, Yasmin Senturias, MD, Vincent C Smith, MD, MPH FAAP, H. Eugene Hoyme, MD, and Miguel Del Campo, MD (Screening, Assessment, and Diagnosis) Yasmin Senturias, MD, FAAP (ND PAE) Yasmin Senturias, MD, FAAP, Vincent C Smith, MD MPH FAAP, and Prachi Shah, MD (Treatment Across the Lifespan for Person with FASD) Funded by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention : U38OT0001, U84DD0011 & U84DD0010

30 Contact me ANYTIME! Thank You! Kathy Mitchell NOFAS.org Washington, DC