Susan M. Stephens, MD, FAAP Medical Director Comprehensive Medical and Dental Program Arizona Department of Child Safety

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1 Susan M. Stephens, MD, FAAP Medical Director Comprehensive Medical and Dental Program Arizona Department of Child Safety Tracy Sloat, RN, MN Nurse Manager Office of Family Health Maricopa County Department of Public Health

2 1. Science behind substance exposure 2. Care of the newborn 3. The Mom s Story 4. The growing child 5. Navigating the health care system 6. Navigating the education system 7. Risk and Protective Factors

5 » Polysubstance abuse is the norm» Fetal exposure to drugs/alcohol 20% At least 10% exposed throughout pregnancy Pregnant woman in substance abuse treatment using alcohol (+/- drug use) declined from 46.6% to 34.8%» Alcohol use 10.0% of pregnant women Binge drinking 4.4% Heavy alcohol use 0.8%» Illicit drugs 4.5% within past month Substance abuse admissions (drugs only) rose from 51.1% to 63.8%» Problem is under-reported 2013 SAMSHSA

8 » Impaired fetal growth» Prematurity» Neurologic deficits» Behavioral changes» Developmental Delays» SIDS» Child abuse MacMahon JR. Perinatal Substance Abuse: The Impact of Reporting Infants to Child Protective Services. Pediatrics (5)e1-9

10 Alcohol & other drugs affect whatever organ and system currently growing The brain grows and develops every day during pregnancy

11 Fetal Alcohol Spectrum Disorders

» Narcotics & pain killers Prescription medications Heroin & Methadone Craving» Brain receptors altered Cycle of drug craving and drug withdrawal»

13 » Narcotics & pain killers Prescription medications Heroin & Methadone Craving» Brain receptors altered Cycle of drug craving and drug withdrawal» Methadone/Buprenorphine Therapy + Provides safer drug substitute + Long half-life - eliminates craving and breaks cycle + Goal is rehabilitation» Do not detox during pregnancy Withdrawal

14 Nicotine Alcohol Marijuana Cocaine Opioids PCP Meth Benzos Prematurity Yes Yes No Yes Yes/No No Yes/No Yes Low Birth Weight Yes Yes No Yes Yes/No No Yes Yes Neuro - Behavioral SX Yes Yes Yes Yes Yes Yes Yes Yes NAS Yes Yes No No? Yes Yes/No Yes? Yes Congenital Malformations Yes/No Yes No? Yes/No No Yes Yes? Yes/No SIDS Yes Yes Yes Yes Yes Yes Yes Yes Child Abuse or Neglect Yes Yes Yes Yes Yes Yes Yes Yes Yes/No = both have been reported,? = controversial or unclear findings Adapted from Jansson LM, Velez ML. Peds in Review. Jan 2011

15 Pediatrics Technical Report 2013; 131:e1009-e1024

16 » The causes of most birth defects remain unknown» The causes of most cases of cognitive disabilities remain unknown» The causes of most behavior disorders are unknown» Combination of: Genetic and environmental factors Abuse of multiple substances

17 Substance Abuse is a Family Affair! Contemporary Pediatrics

18 » True withdrawal - opiates, sedative-hypnotics, & alcohol» Withdrawal-like symptoms antidepressant & antipsychotic medications & nicotine» Onset varies + Type & amount of drugs + Time of last use + Character of labor & meds used during labor + Full term vs. premature infant + Nutritional status of mother + Presence of disease in infant» Symptoms from birth to 72 hours of life» Duration of symptoms 6 days - 3 months

20 » For both the birth mother and the substanceexposed newborn, it is important to remember that it is more about support and intervention than a cure» Specific diagnosis may not be possible» Helpful guidelines: Clear understanding Realistic expectations Creative problem solving Patience

21 » Seen with all substances of abuse» Tremors» Irritability» Difficulty being consoled» Hypertonicity» Increased startle response (Moro reflex)» Respiratory, feeding, & sleeping problems

22 Baby Note pitch of cry Note muscle tone Note posture

23 » Engage mom in treatment, if possible» Allow infant to rest & don t handle excessively» Avoid overstimulation» Establish sleep & wake routines» Consistent & stable environment Non smoking environment!» Coordinate all care after infant wakes» Swaddle in blanket

25 » SENs at increased risk of SIDS» Back to Sleep AAP Program Always have infant sleep on back, unless supervised tummy time» Avoid overheating Dress appropriately» Avoid second hand smoke exposure» Safe Sleep Practices No Co-sleeping Keep infant off of soft surfaces, pillows, blankets, mattresses

27 » Small, frequent feeds» May need to try different nipples» Offer pacifier for sucking reflex» Discuss optimal caloric needs with PCP» May need to wake infant every 3-4 hours, if not meeting caloric needs» May need referral for feeding evaluation

28 » Passive range of motion» Infant massage» Supportive positioning» Tummy time (supervised)» No walkers» May need Occupational Therapy or Physical Therapy evaluation ask PCP

29 » Don t allow infant to become frantic» Control and structure environmental stimuli» Swaddle in flexed position» Vertical rocking (vs. horizontal)» Avoid eye contact» Keep at arm s length» Give pacifier

31 2009 Calendar by Ann Geddes

32 » Refer to AzEIP (0 3 years)» Head Start (preschool)» Interactive reading on a daily basis» Speech therapy referral ask PCP If early vocalizations not present Speech delay» Hearing evaluation All infants should be screened Ask PCP about evaluation, if concerns

34 » Recognize the birth mom s story» The gift of acceptance» Examine our own biases

35 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 No safe TIME. No safe TYPE. No safe known AMOUNT

36 Neuro - Behavioral Symptoms Nicotine Alcohol Marijuana Cocaine Opioids PCP Meth Benzos Yes Yes Yes Yes Yes Yes Yes Yes Yes/No = both have been reported,? = controversial or unclear findings Adapted from Jansson LM, Velez ML. Peds in Review. Jan 2011

38 Attention Deficit Hyperactivity Disorder Oppositional Defiance Disorder Anxiety Post-traumatic Stress Disorder Conduct Disorder Reactive Attachment Disorder Mood Disorder Emotional Disability Behavioral Disorder Bipolar Disorder Obsessive Compulsive Disorder Autism Spectrum Disorder Asperger s Disorder Fetal Alcohol Spectrum Disorder Fetal Alcohol Syndrome

..thinks in a disorganized way...thinks like the brain of someone much younger.

39 Alcohol and Other Drugs During Pregnancy Can Create a Lifelong Brain That:...can t read the emotions or body language of other people responds slowly...can t link cause and effect...thinks in a disorganized way...thinks like the brain of someone much younger...has trouble moving information from one situation to another...forgets information...has difficulty with time and money uses poor judgment The Invisible Disability Brain Fatigue

41 Neuro-developmental Disorder Slow cognitive pace (10 sec) Act younger than age Difficulty transitioning Need more time Multi-sensory learners Concrete learners Memory deficits Our Environmental Demands Rapid response Children are grouped by age Multiple, quick transitions One timeline for everyone One Instructional style Abstract learning - Inference Memory testing

42 Try differently rather than harder Trying Differently Rather Than Harder: Fetal Alcohol Spectrum Disorders Diane Malbin,

44 If behaviors are believed to be willful, intentional, or the result of emotional problems, interventions typically focus on changing the behaviors. If behaviors are understood as reflecting brain differences, interventions focus on changing environments in order to prevent frustration and provide support p. 25

45 FROM Annoying Lazy, unmotivated Lies Fussy Acting younger, babied Trying to get attention Inappropriate TO Frustrated, challenged Tried hard, tired of failing Confabulates, fills in blanks Hyper-sensitive Displays behaviors of younger children Needs contact, support Displays behaviors of younger children

46 FROM Hopelessness Fear Chaos, confusion Power struggles Isolation TO Hope Understanding Organization, comprehension Working together Networking, collaboration

47 FROM TO Stopping behaviors Preventing problems Behavior modification Changing people Modeling, using visual cues Changing environments Trying Differently Rather than Harder, Diane Malbin 2002

50 Arizona s Pediatric Programs DES *Division of Child Safety (DCS) *ADHS OCSHCN AHCCCS (Medicaid) Medical Health Needs *AzEIP Early Intervention *DDD Child Welfare *CMDP *ADBHS Behavioral Health VFC ASIIS WIC *Agencies who might be engaged by those children with special healthcare needs *RBHAs; MMIC, NARBHA, CPSA, Cenpatico *ALTCS *CRS Title XIX & V *AHCCCS Acute Health Plans

51 » Establish a PCP and Medical Home 10 EPSDTs (well child visits) in 1 st 2 years of life + Developmental & Behavioral Health Screening Annual EPSDT after age 2» Establish a Dental Home No referrals needed for dental care Dental care begins at age one (1)!! Routine preventative visits twice/year» Ensure RBHA (behavioral health) services ASAP Urgent Response Assessment starts at 7 days Do NOT take wait and see attitude RBHAs must keep children in out of home care open for services for a minimum of 6 months

52 Division for Developmental Disabilities (DDD) DDD/ALTCS (Az Long Term Care Services) AZ. Early Intervention Program (AzEIP) Behavioral Health Children s Rehabilitative Services (CRS)

53 1235AHBPNA.pdf

54 »Start with your Pediatrician»504 Plan verses IEP»YOU are your child s best advocate

55 » Prohibits discrimination on the basis of disability» Accommodations related to the child s disability so that he or she may participate in the general classroom setting» Fewer procedural safeguards than the IEP

56 » The Individuals With Disability Education Act (IDEA)» Qualifying diagnosis» Measurable goals and quarterly documentation» Processes and Procedures for Developing IEPS:

57 » Autism» Blindness» Deafness» Emotional Disability» Hearing Impairment» Mental Retardation» Intellectual Disability» Multiple Disabilities» Orthopedic Impairment» Other Health Impairment» Developmental Delay» Specific Learning Disability» Speech or Language Impairment» Traumatic Brain Injury» Visual Impairment

64 Drug(s) Medical Complications Postnatal Caregiving Environment Other Factors: Mom and Child

65 » Parental Resilience» Social Connections» Knowledge of Parenting and Child Development» Concrete Support in Times of Need» Social-Emotional Competence of Children

67 67

The Substance Exposed Newborn Alphabet Soup

The Substance Exposed Newborn Alphabet Soup SEN, NAS, NOWS, OUD, SUD & MAT Sara Park MD Chief Medical Officer Comprehensive Medical and Dental Program Department of Child Safety CAP conference, July 2017