Context Driven Assessment and Treatment of a Developmentally and Psychiatrically Complex Patient with FASD

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 childs 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
History of the Present Illness (cont.)

• 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

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!