Paula J. Lockhart, MD Child and Adolescent Psychiatrist

1. Context Driven Assessment and Treatment of a Developmentally and Psychiatrically Complex Patient with FASD Paula J. Lockhart, MD Child and Adolescent Psychiatrist FASD Diagnostic and Treatment Center Project Kennedy Krieger Institute

2. Overview • Despite the complexity of some of our patients with FASD many can achieve a certain level of stability over time when specific areas of their functioning are prioritized • In the more impaired individuals their problems are multifactorial and therefore a complex interplay between • Cognitive factors • Environmental conditions • Susceptibility to behavioral and emotional reactivity • Genetic predisposition for psychiatric disorder • Tackling these problems requires an integrated context oriented approach

3. What prevents a context driven approach? • Although we know a lot about FASD in psychiatry and other mental health disciplines there is a paucity of information about the psychiatric assessment of this disorder and how to treat it • Consequently, it is treated by “signs and symptoms” • In FASD signs and symptoms are misleading • Proof of this is the poor outcome that is so characteristic of the disorder

4. Autism is an Example of a Disorder that Requires a Context Oriented Approach

5. What are other problems interfering with Health Professionals Providing good enough services • Most mental health professionals do not understand FASD oriented cognitive disability • The disorder is not housed in the DSM • There is no where to get a consultation • There is no text where this information is easily obtained in rapid style • These patients can often look happy and healthy thereby misleading the practitioner who has to make a rapid decision about treatment

6. Challenges of Assessment and Treatment of the Developmentally and Psychiatrically Complex Child with FASD • Assessment must be comprehensive but should not add more stress to the family • Parent needs and style must be dynamically factored in • The assessor needs to understand FASD cognitive and behavioral problems “before hand” (without DSM IV criteria assessments are unfortunately usually symptom oriented rather than diagnosis driven)

7. Challenges of Assessment and Treatment of the Developmentally and Psychiatrically Complex Child with FASD • Diagnosis driven evaluation provides the context of the behavior and emotional symptoms rather than jumping to conclusion that this is straight forward ADHD, or other diagnosis in isolation (example of autism) • The cognitive disability plays an important role in driving the emotional and behavioral presentation and may change the appearance of the axis I diagnosis to a great extent

8. Challenges of Assessment and Treatment of the Developmentally and Psychiatrically Complex Child with FASD • These cognitive changes also influence medication management in that anticipation of emotional/behavioral volatility associated with this type of cognitive disability is important in prevention of “break through’ symptoms when the child is in toxic circumstances for her/him • Examples- lack of structure, bullying, seduction, being lead, overwhelming sensory situations, being angry, being threatened, being asked to perform over mental age

9. Overall summary of the case • Perinatal complications • Early deprivation • Multiple learning disabilities • Developmental delay • Psychiatric co-morbidity • Multiple foster placements for one year before adoption • Effects of child psychopathology on the parent

10. Summary (continued) • Effects of developmental disabilities on parenting ability • Effects of prenatal alcohol on cognition and behavior • Unknown genetic contribution from biological parents • Lack of external support (no respite) • Effects of unfriendly educational environment on academic achievement, development of peer interactions and self-esteem

11. Summary • Fighting educational system for appropriate services • Obtaining child services and trying to balance work responsibilities • Effect of being blamed for child’s behavior • Perceived medication resistance • Parental fear of medication • Maternal illness and not coming regularly to appointments

12. Background Information JF • Is a 9 year old African American boy • Adopted by Ms. N at 3 years of age • Was in foster care system for one year- (2-3 yrs of age) • Little information available from birth to 2 yrs of age • multiple foster placements during the one year until adopted

13. Presenting Complaints • Intermittent Insomnia (day-night reversal) • Intermittent sleeping in school • Emotionally labile, irritable • Hyperactive/restless • Impulsive • Poor eye contact • Impaired social skills • Poor school performance • Vulnerable to being victimized by peers

14. History of the Present Illness • This the second psychiatric evaluation for this 9 yr. old adopted African American boy • Presenting complaints essentially unchanged since placement with Ms. N • Most important reasons for requesting evaluation school placement issues sleep problems, hyperactivity, sadness, and impaired social skills.

15. History of the Present Illness (cont.) • Educational concerns • Parent very concerned about school placement and feels that he is incorrectly placed. • Witnessed other students and teachers embarrassing JF because of his immature behavior in class • Ms. N realizes that teachers and school officials blame her for JF sleeping during the day • Poor academic performance • Has some good days • Needs much assistance to complete homework

16. History of the Present Illness (cont.) • Sleep Problems • Problem with sleep initiation for several days at a time • Will stay up entire night jumping on his bed • Sleepy and irritable in the morning • Will sleep through his classes • Insomnia alternating with normal sleep habits (insomnia greater than normal sleep) • No nightmares, night terrors or somnambulism • History of obstructive sleep apnea

17. History of the Present Illness (Cont.) • Hyperactivity/Inattention • Extreme levels when not in structured environment • Has trampoline that he uses daily for hours to decrease energy • Throws himself down on hard surfaces • When not sleeping in class is extremely restless • Present in all situations-school and home • Often appears not to hear or comprehend despite normal hearing • Takes longer to complete tasks than other children

18. History of the Present Illness (Cont.) • Sadness • Tearfulness alternating with normal mood • Easy demoralization • Breaks down easily and often at the slightest criticism • Walks with head down and shoulders slumped • Will cry easily when not getting what he wants • Not suicidal • Poor appetite

19. History of the Present Illness (cont.) • Impaired Social Skills • Poor eye contact • Will go with any adult • Trouble playing cooperatively • Has no friends • Social behaviors lead to victimization from peers and critical behavior from adults

20. Denies physical or sexual abuse hallucinations or delusions suicidal or homicidal ideations abnormal sexual behaviors No severe head injury or loss of consciousness Fire-setting Encopresis (occasional enuresis) aggression cruelty to animals History of the Present Illness (cont.)

21. Developmental History • Had birth complications (specifics unkn) • Length of pregnancy unkn • Weighed 6 lbs at birth (apgars unkn) • Considered small for gestational age • Prenatal exposure to alcohol and other substances • Had medical complications in the newborn period (specifics unknown) • Walked unaided at 18-24 months • First words were at 28 months

22. Social History • Biological mother was 28 years old • Biological Father 58 • Has 2 sisters (7 and 8 years of age) adopted by another family • Has one deceased sibling who passed away at 2 years of age (cause unkn)

23. Social History (cont.) • Adopted by a 49 year old single woman who works fulltime • She has Type II Diabetes with retinal and kidney changes, and lung changes secondary to exposure to asbetos • Idiopathic Alopecia, herniated disk • Worked at Bethlehem Steel • Struggling with stress of parenting (has depression) • No assistance from family or friends • Has medical issues which she was not addressing because of the needs of JF

24. Educational History • Attended Head Start • Attended preschool program • Attended kindergarten for 2 years because social skills were delayed (parent held him back) • Slower than the other children in completing assignments • Cries or puts head down on the desk when overwhelmed by the classroom activities • Periods when he can complete schoolwork • Teachers feel that he could do the work if properly motivated • Presently in 3rd grade (in special education)

25. Psychological Testing July, 1999 at 4 yrs, 11 months Visually based cognitive abilities- 3 1/2-4 yr old range Language Skills generally in the 2 ½-3 yr old range Academic Skills-3 ½-4 yr. old range PIQ-71; VIQ-62; FSIQ-63

26. Medical History • Probable early deprivation • Adenoidectomy, tonsillectomy • Chronic sinusitis and Otitis, on prophylactic antibiotics for 6 months until adopted and then treated with Vitamin C (by Ms. N) • Weight-10th percentile • Height 5th percentile • HC-50th percentile • No seizures, asthma, diabetes, severe closed head injury • Immunizations up to date • No allergies

27. Psychiatric History • No psychiatric hospitalizations • Past Psychiatric History • Outpatient Treatment • 2 stimulant trials-marginally helpful (Adderall and Ritalin)

28. Mental Status Exam JF is a 9 year old is a short and thin, mildly dysmorphic boy who appears overall less mature than his chronological age, establishes fleeting eye contact and minimal engagement. Displayed no abnormal movements, stereotypies or tics; but was perseverative with toys. He spent most of the session crashing dinosaurs into one another. Speech is normal rate and rhythm. Content of thought very preoccupied with dinosaurs. Negative for hallucinations, delusions, suicidal and homicidal ideations. He is oriented to person, place, and grossly to time. Short term memory appears intact but he refused or ignored many questions. Had much difficulty ending the play with the toys and became tearful and oppositional refusing to clean up. Not interested in art materials or puppets.

29. Preliminary Diagnosis Final Diagnosis • Axis I • ADHD possibly confirmed • Mood Disorder, NOS (r/o Bipolar disorder) Bipolar D/O • Reactive Attachment Disorder • R/O Pervasive Developmental Disorder, NOS confirmed • R/O Expressive language Disorder confirmed • R/O Receptive Language Disorder confirmed • Axis II: Probable Mild MR (no adaptive functioning) not confirmed • Axis III:Prenatal substance exposure (including alcohol) confirmed Alcohol Related Neurodevelopmental disorder (ARND) FAS H/O chronic sinusitis, and Otitis media • Axis IV:Multiple early foster placements, poor school placement, victimization by peers, adoptive parent has multiple physical illnesses • Axis V:GAF 45

30. Recommendations • Neuropsychology testing • Psychopharmacology clinic • Referred for psychotherapy and parenting support • Speech and Language Testing • Occupational therapy evaluation • Behavior checklists from home and school (evaluate for ADHD) • Obtain previous medical records (about sleep apnea, chronic infections) • Consider EEG/MRI • Urine for organic and amino acids, lead level, R/O fragile X, obtain Thyroid functions

31. Course of Treatment • Psychotherapy • Psychopharmacology • Follow up medical evaluation of sinus infections and hearing (CT scan, sleep study) • Occupational therapy evaluation and treatment • Speech and language evaluation and treatment • Evaluation in the Autism and Related Disorders Clinic (CARD) • School Intervention • Social Service Involvement • Temporary Foster care placement • Court • IEP Meeting

32. Neuropsychological Testing • Auditory Attention within normal limits • Overall intellectual abilities in borderline range (WISC VIQ-83; PIQ-79; FSIQ-79 (improved since 1999) • Verbal and Non-verbal problem solving skills in low average range (when there were less demands on working memory and processing speeds were reduced) • Screen of academic abilities ranged from borderline (math) to low average (word reading and spelling) • Overall adaptive behavior scores fell below age level (4 yrs. 9 month old)

33. Neuropsychological Testing (cont.) • Executive dysfunction-inattention, poor behavioral and emotional inhibition • Receptive, expressive language and pragmatic language skills were below age level • Motor Functioning-Showed signs of neurologic dysfunction, suggested disruption of subcortical and cerebellar systems • Emotional Functioning-Intermittent incidents of crying and emotional lability Recommendation: Change federal handicapping code status to multiply handicapped to account for language, emotional and attentional difficulties in his cognitive and his behavioral presentation

34. Occupational Therapy Evaluation • Fine Motor Deficits • Visual Motor Deficits • Sensorimotor Deficits • Decreased attention • Probable Auditory Processing difficulties • Decreased Self Help skills • Sensory processing and modulation deficits “These impairments limit functional performance and participation in age appropriate developmental activities and adversely affect performance with school tasks…. and self esteem”

35. Speech and Language Evaluation • Well below average receptive/expressive language skills with respect to chronological age and below measures of cognitive abilities • Pragmatic language disorder

36. CARD Evaluation Was administered: Autism Diagnostic Observation Scale (ADOS) Autism Diagnostic Observation Schedule Independent Evaluation Findings Consistent with: Pervasive Developmental Disorder, NOS

37. Psychotherapy • Weekly appointments with clinical psychologist • Behaviorally focused • Other emphasis on parent support around home behaviors and school issues • Parent education • Advocacy of parent and child

38. Medication Management • Dexedrine • Dexedrine SR and Risperdal • Wellbutrin Tabs and Risperdal • Concerta and Risperdal • Straterra • Trileptal and Straterra • Trileptal and Ritalin LA-final

39. Other Medical Follow up • CT scan showed continued mild sinus membrane engorgement but no other abnormalities • Sleep study was negative for apneic episodes • Hearing exam unremarkable • Lead level unremarkable • Other labs within normal limits

40. Context Driven Treatment Interventions • educational setting improved for a short time • made great progress in speech and language group treatments • updated Neuropsychological testing indicates solidly average IQ but the time it took to determine this would indicate that he can not ever show this in the classroom without accommodations • OT interventions is helping with gross motor skills and they have determined ways to help him sleep at night using a swing. • Mood is improved on the trileptal, there are fewer day night reversals, less tearfulness, and reduction in inattention, and hyperactivity and impulsivity on the Ritalin LA compared with the other stimulants. • Medical work up removed doubt about some presenting problems

41. New Issues • Mother moved to the county • Her health has improved some but then she developed new condition • Lawyers helping her finally gave up the fight to obtain non-public level 5 • Some alienation from family for unknown reasons • School took away special education support because he was doing well

42. Personal Challenges of the Professional • Patiently letting all the information unfold • Being non-judgmental • Avoiding demoralization • Being a friendly supporter and objective at the same time • Being able to step back from the situation • Allowing the parent and patient to teach us • Maintaining energy level in the face of disaster • Knowing how to ask for help from colleagues • Being consistent • Being kind when under stress

43. Conclusions • We often cannot see the light at the end of the tunnel until we are a couple of inches from the light • Trying to maintain the structure of treatment that works is absolutely essential to success • Avoiding demoralization and exhaustion in the parent/guardian and ourselves is so important to success • Transitioning to other practitioners, losing mentors because of financial problems or losing special education services can be deadly to the progress of these youngsters and can lead to extreme outcomes like prison or residential treatment

44. Closing Remarks Psychiatric treatment research is needed Context driven Assessment and Treatment can occur more readily with FASD in the DSM V However until then educating health professionals so that they understand the cognitive profile of the child should improve the outcome of the treatment There needs to be an acceptance that the more severely affected individuals with FASD will require long term intense care The system therefore needs to make huge adjustments to accommodate to the long term needs of these individuals so that their outcome is maximized

45. Thank you!