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UCSD RCHSD

March 24, 2009


Assistant Clinical Professor,
Dept of Psychiatry, University of
California at San Diego School of
Medicine

Faculty, Interdisciplinary Council on


Developmental and Learning
Disorders
ICDL Faculty – minimal - review of
clinical write ups, travel and room
for summer institute
NIMH/ Duke University – minimal –
administrative time for
pharmacogenetic research
a novella on the use of medication (20 min)
brief monograph:
medication from a DIR® perspective (3 min)
fantasies and nightmares
in med-land (2 min)
the story of a real boy
and a diagnostic system (20 min)
your stories…(15 min)
 all slides will be posted on
circlestretch.blogspot.com
follow the blue dot!
 Quick history: Magda Campbell: haloperidol
helps social learning; others:
methylphenidate causes side effects without
benefit.
 Today: we try to treat target symptoms,
carefully, based on responses in other
conditions to medications.
 Takes time to assess, and re-assess.
 Big issues: marketing, side effects, and
efficacy studies.
 Efficiency study: CAPTN (Duke: John March,
el al – I’m an et al…).
Most people consider meds because
they feel stuck, maybe desperate
Emergencies: aggression, depression,
others?
Lack of progress
What do we want for the child?
What is the meaning of the disability
to the family and to the child?
The usual wish: a meaningful life
(socially, emotionally, maybe
cognitively)
Requires a plan, and medication
alone is not a plan.
 regulatory issues/ motor and sensory areas
addressed
 engagement and reciprocity (vs. focus on
compliance)
 language/ communication
 cognition/ learning
 daily living skills followed by broader and
broader areas of life skills, from school and
playground to vocational skills.
Are we asking too much of the child?
Of the family?
Of the school?
Low Support - Low Expectation Low Support - High Expectation

(neglect…) (‘Just do it…’)

High Support - Low Expectation High Support - High


Expectation
(walking on eggshells, more and
more constricted…e.g. gamers) (respectful coaching)
Isthe program adequate?
Will they change the child’s brain and
actually fix it?
Will they injure the child?
What should I expect?
Losing time while pulling the program
together
Doing as much as possible
Awakenings – should we go for a
miracle?
We do not know enough to say ‘you
really should medicate’
If there is no emergency, you have
more time to think about it
When parents differ, it can be an
opportunity for more thoughtful
planning
 
 Are you trying to save a placement or make up for
a bad one?
 Are meds a last resort or is it unethical to withhold
them?
 Complete workup a must: consider EEG, labs, etc.
along with complete history, physical, MSE, and
collateral information.
 Availability - doctor MUST stay in touch with
family and school
 Rapid, large, or multiple changes are often
problematic
 Grid target symptoms vs. possible meds and fill in
possible +’s & -’s
 Easy for the treatment team to react and
overuse medications
 Side effects often create significant
difficulties, e.g., behavioral activation
(SSRIs), increased perseveration
(stimulants), sedation (some
anticonvulsants, others).
 Team treatment often becomes ‘all about
the medication’, ignoring engagement,
other factors.
 Bottom line: medication probably does not
treat core symptoms, but might create more
affective availability, if you can avoid
significant side effects.
elements of informed consent
the process of informed consent
‘nearly everything is experimental’
‘we have to track this fairly closely’
NAME: DOB: DATE:
 
DIAGNOSIS:
 
TARGET SYMPTOMS:
 
TREATMENT PROTOCOL:
  
ALTERNATIVE TREATMENTS DISCUSSED:
POSSIBLE RESULTS OF NO TREATMENT:
SIDE EFFECTS DISCUSSED:
FDA LABELING DISCUSSED:
CONSENT AND ASSENT DISCUSSED:
 
COMMENTS/QUESTIONS/CONCERNS:
 
 
I UNDERSTAND THIS CONSENT AND ALL HAS BEEN EXPLAINED TO ME. TREATMENT, INCLUDING USE
OF MEDICATIONS IS VOLUNTARY AND I PLAN TO WORK WITH THE DOCTOR TO MAKE THE BEST USE
OF THESE.
I CONSENT TO THE TREATMENT. IF MEDICATION IS PART OF THE TREATMENT PLAN AND I WILL
REQUEST THE PRODUCT INFORMATION INSERT AT THE TIME A PRESCRIPTION IS FILLED.
 
_____________________ _________ ___________________
PATIENT SIGNATURE DATE PHYSICIAN
 
_____________________ __________________________
PARENT/GUARDIAN (IF APPLICABLE) RELATIONSHSIP TO PATIENT
……………………………………………………………………………………………….
update to plan: date initial of responsible party
 Find a doctor you like and feel you can
work with
 Keep the doctor in the loop
 Don’t overwhelm the doctor with data
 Think carefully before rapid, large
changes in dose or before changing
more thing than one thing at a time.
 Respectfully offer resources – don’t expect
your doctor will read a book for you, but do
expect your doctor is interested in other
opinions from other doctors
Look for Basic Competence: APBN
Board Certified Child and Adolescent
Psychiatrists were checked for
competence in assessing autism, and
for use of collateral information from
family, school, and other
professionals.
Look for Honesty: AACAP = a
promise to be ethical and do their
best
Helping parents determine when
medication may be worth considering
Helping families navigate well to
utilize their doctors and other
providers
Helping families orchestrate the
whole set of interventions into a
coherent and manageable plan
Good Luck!
 
Can Medications Help Kids Have
Better,
More Productive Relationships
With Us?
 Co-regulation
 Engagement
 Circles
 Flow
 Symbolic thinking
 Logical social problem solving
 Multi-causal thinking
 Grey area thinking
 Reflective thinking, stable sense of self,
internal standard
Sensory processing
Postural control/ motor planning
Receptive communication
Expressive communication
Visual-spatial function
Praxis: ideation, planning,
sequencing, execution, adaptation
 Support regulation and co-regulation by
treating symptoms that get in the way,
e.g., impulsivity, inattention, anxiety,
rigid thinking, perseveration.
 Widen tolerance of affective experience
so the person is less likely to become
overwhelmed.
 Treat co-morbid conditions, e.g.,
depression.
 Possibly: allow for or promote improved
ability for abstract reasoning and
thinking.
DIR® is the main course
Meds are the pickles…
A Good Enough Wizard
Unpredictable Potions
Nefarious Forces:
syndromes & systems
(affecting schools, social services, and industry)
and
transferences & countertransferences
(invisible and everpresent)
Peace, from nearly anything that ails
you
Rare Miraculous Awakenings
Seizures
Weight gain
Insulin resistance
Tardive Dyskinesia
Neuroleptic Malignant Syndrome
perseveration, anxiety, depression
may improve
often the benefits are outweighed by
overactivity, inattention, or even
mania, rarely seizures, and sweating
as a precursor to serotonin syndrome
 For mood stabilization, oh, and fewer seizures
 “Well Mrs Farkel…” Liver, pancreas, weight gain,
sedation, incontinence, drooling, and if you ever
want to have babies beware of PCOS, loss of white
cells, bleeding problemss
 Tegretol’s blood and cardiac problems
 Lamictal’s scathing rash, and unweildy interaction
with Depakote
 Topamax: wt loss, but language loss; unreliability,
decreased sweating
 Others…
‘The plan that lived’, due to better
focus and less overactivity
Ragged sleep, ratty moods, thin waifs
with sunken eyes, stupors, tics, and
occasional paranoia; cardiac and
growth issues
Reliable anxiolytic, helpful for
seizures
Reliable loss of memory and motor
control, with inability to benefit from
learning and high risk of falling and
automobile accidents
Addiction is rampant
ALL MEMBERS OF THIS CLASS
(BENZODIAZEPINES) ARE
PROBLEMATIC
 The number one cause of death by
antidepressants due to overdose in the
days before SSRIs –
CARDIOTOXIC: have people LOCK THEM
UP! and get serial EKGs w/ Cardiologist
readings
 Still,
they are as effective or more effective
than any other antidepressants we have,
and clomipramine is more effective,
generally than SSRIs for OCD.
Finda good enough Wizard, one who
knows the stories, good and bad, and
who listens to you and your people
case synopsis
video clips
analysis
discussion
K Searcy - ?Meds for anxiety in
autism, Jan 2008
Failure to make gains despite
massive services
 Autism
 SAFETY – fingers in eyes
 extremely perseverative (fans)
 anxiety
 over-activity
 tantrums
 language
 hard to take him out, (esp. dad)
 ?seizures.
 planned C/S at 39 wk., mild jaundice, WBC up but ok.
 constantly nursing, mom w/o sleep.
 crawled 9 mo, walked 11 mo
 words at 12 mo but slow to gain new ones and they didn’t
stick well
 13 mo: sudden stimming, classic ASD,
but still cuddling
 FH: sister PDDNOS now ‘better’, cousin ASD; others:
anxiety, OCD
 Sp Ed PK and CARES then ACES, Crimson, etc.
 medical: ?Sz, allergies to eggs, peanuts, amox, eczema
 Medicationss: Trileptal, EEG improved;
Spring 08 Citalopram at 10 mg helps
anxiety; Fall 08 Metadate CD 15 mg.
‘break the door’ MOV00732.MPG
(0:10)
Malingo Toya ‘song and dance’ (0:55)
This Little Piggy (4:50)
 Axis I – Primary Diagnosis
 Axis II - Functional Emotional
Developmental Capacities
 Axis III‐Regulatory‐Sensory Processing
Capacities
 AxisIV‐Language Capacities
 AxisV‐Visuospatial Capacities
 AxisVI‐Child‐Caregiver and Family Patterns
 AxisVII‐Stress
 Axis I – Primary Diagnosis
Axis II - Functional Emotional
Developmental Capacities
 Axis III‐Regulatory‐Sensory Processing Capacities
 AxisIV‐Language Capacities
 AxisV‐Visuospatial Capacities
 AxisVI‐Child‐Caregiver and Family Patterns
 AxisVII‐Stress
Not Barely Islands Expand Comes Ok if Ok for
there s back not age
Co- 3/08 9/08 3/09 stress
regulate ed

Engage 3/08 9/08 3/09

Circles 3/08 9/08 3/09

Flow 3/08 9/08 3/09

Symbolic 3/08 9/08, 3/09

Logical 3/08,3/07,3/08

Multicaus 3/08,3/07,3/08

al
Grey area 3/08,3/07,3/08

Reflective 3/08,3/07,3/08
03/08 – moments of gleam and a couple of circles
when I get playfully in his way unplug the fan or
stop him from crawling under my desk
09/08 - join and shift the OC on AC to ram into
couch; shift OC on AC to blanket fan; fishing for feet –
flow; malingo toya – making a song – somewhat symbolic
3/09 – calmer and able to cuddle nearly the whole session
with mom, makes possible coaching mom for more
elaboration of circles and some flow with her; can talk about
toes, but not really more symbolic per se.
 Axis I – Primary Diagnosis
 Axis II - Functional Emotional Developmental Capacities
Axis III‐Regulatory‐Sensory
Processing Capacities
Axis IV‐Language Capacities
Axis V‐Visuospatial Capacities
 AxisVI‐Child‐Caregiver and Family Patterns
 AxisVII‐Stress
Sensor Postural Response to Intent to Visual Praxis -
y Communicatio Communica Exploration
n te
Sensory Best when core is Cues into important Often Spots fans at distance;  Perseverative
seeking, supported words unintelligible ideas; can
fingers in eyes; rare 
distractible expand w/
gleam support

Auditory 1 indicate desires •Orient •Mirror


vocalizations •focus on object Ideation
Visual ----3/08---- ----3/08---- ----3/08----
----3/08---- ----3/08----
Tactile 2. mirror gestures 2. key tones 2.. Mirror
gestures 2. Alternate gaze Planning
3. imitate gesture 3. key gestures 3. Follow (including
Vestibular another’s gaze
3. gestures sensory
4. Imitate with 4. key words to determine knowledge to do
Proprio- intent.
purpose. 4. sounds this)
ceptive 3. Switch visual
----9/08---- ----9/08---- ----9/08----
5. Obtain desires 5. Switch auditory 5.words attention
Taste 6. interact: attention back and ----9/08---- ----9/08---- Sequencing
- exploration forth 4. visual figure ----3/09----
Odor -purposeful 6. Follow directions 6. two –word ground
----3/09---- 7. Understand W ?’s 5. search for Execution
----3/09---- 7. Sentences object
- self help 8.abstract ----3/09---- ----3/09---- Adaptation
-interactions conversation. 8. logical flow. 6. search two
areas of room

7. assess space,
shape and
materials.
 Axis I – Primary Diagnosis
 Axis II - Functional Emotional Developmental Capacities
 Axis III‐Regulatory‐Sensory Processing Capacities
 AxisIV‐Language Capacities
 AxisV‐Visuospatial Capacities
AxisVI‐Child‐Caregiver and Family
Patterns
AxisVII‐Stress
 Learned to quiz him, and quizzing him
 Can engage in some back and forth, coachable
 Discomfort with him in public –so different from
other kids - improving
 Stress: eye issue harrowing, but improving as he
becomes more connected.
 MANY OF OUR FAMILIES HAVE A FORM OF PTSD!
Axis I – Primary Diagnosis
 Axis II - Functional Emotional Developmental Capacities
 Axis III‐Regulatory‐Sensory Processing Capacities
 AxisIV‐Language Capacities
 AxisV‐Visuospatial Capacities
 AxisVI‐Child‐Caregiver and Family Patterns
 AxisVII‐Stress
 100. Interactive Disorders
 200. Regulatory Sensory Processing Disorders
300. Neurodevelopmental
Disorders of Relating and
Communicating
 400. Language Disorders
 500. Learning Challenges
 300.1 Type I: Early Symbolic, with Constrictions ; intermittent capacity for attending,
relating, reciprocal social interaction, including social problem solving, and beginning use of

meaningful ideas‐makes rapid progress in a comprehensive program

 300.2 Type II: Purposeful Problem Solving, with Constrictions; as above but only
fleeting social problem solving‐tend to make steady, methodical

progress
 300.3 Type III: Intermittantly Engaged and Purposeful; only fleeting attention and
engagement, occasional reciprocal social interaction with lots of support ‐ slow,

steady progress possible, maybe with gradual use of words or phrases


 300.4 Type IV: Aimless and Unpurposful; multiple regressions, maybe more
neurologic challenges, very very slow progress
 ICDL DIR DMIC AXIS I 300.3 NDRC level III:

slow progress
when he has lots of support.
 What works: early on getting in the way, modifying
perseveration, getting him on his back, fanning him,
gradually more able to follow his lead, extending
interactions.
 What doesn’t work: didactics, adding ideas too
quickly
 Why: early on we used the drive of his perseveration to
power interaction, now can often engage him over less
intense things or using shared experiences (little piggies);
position and physical support are still key to his ability to
sustain interaction.
 Medications have been very helpful to this child,
allowing him to respond to developmentally supportive
intervention.
Mar 08: we are in a dangerous crisis – dysregulated
and perseverative
Sept 08: with meds and direction to the intervention,
he can be ‘entrained’ into collaborative
interaction
Mar 09: we are confident that with coaching
his capacities will expand
Medication management, and more…
Guiding the whole team, once and
twice removed.
As the prescribing physician I have
responsibility, accountability, and
leverage - they come back
Will you be careful with the meds?
Will you look at the whole picture?
Will you continue to learn and
explore?

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