Asilomar 2009
Assistant Clinical Professor, Dept of Psychiatry, University of California at San Diego School of Medicine Faculty, Interdisciplinary Council on Developmental and Learning Disorders
The Southern California DIR®/Floortime™ Regional Institute Pasadena, California begins October, 2009 Josh Feder, MD
[email protected] [email protected] Mona Delahooke, PhD
[email protected]
Diane Cullinane, MD
Pat Marquart, MFT
[email protected]
ICDL Faculty – minimal - review of clinical write ups, travel and room for meetings, token honorarium for cowriting and running Southern California Institute NIMH/ Duke University – minimal – administrative time for pharmacogenetic research NIH R21 grant/ San Diego BRIDGE Collaborative – minimal – token honorarium for ongoing consultation and participation
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 Stop me on the blue dots!
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)
Is
the 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.
Find
a 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
Medications: Trileptal, EEG improved; Spring 08 Citalopram at 10 mg helps anxiety; Fall 08 Metadate CD 15 mg.
Mar 08: ‘break the door’ MOV00732.MPG (0:10) Sept 08: Malingo Toya ‘song and dance’ (0:55) Mar 09: This Little Piggy (4:50) May 09: Play with Dad (0:20) May 09: Play wither Feder (1:09) July 09: Play with sister (0:28)
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 there
Barely
Coregulate Engage
Islands
3/08
9/08
3/08
Circles
3/08
Flow
3/08
Symbolic
3/08
Logical
3/08,3/07,3/08
Multicaus al Grey area
3/08,3/07,3/08
Reflective
3/08,3/07,3/08
3/08,3/07,3/08
9/08, 3/09
3/09
9/08 9/08
9/08
Expand s
3/09 3/09
3/09
Comes back
Ok if not stress ed
Ok for age
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 (before this he was seizing…)
09/08 - join and shift
the OC on AC to ram into couch;
shift OC on AC to blanket fan; fishing for feet – toya – making a song – somewhat symbolic
3/09
flow; malingo
– 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. (After this we add dad, sis, and dad ‘coaching’)
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 y
Postural
Sensory seeking, distractible Auditory Visual Tactile Vestibular Proprioceptive Taste Odor
Best when core is supported 1 indicate desires ----3/08---2. mirror gestures 3. imitate gesture 4. Imitate with purpose. ----9/08---5. Obtain desires 6. interact: - exploration -purposeful ----3/09---- self help -interactions
Response to Communicatio n
Cues into important words 1.Orient ----3/08---2. key tones 3. key gestures 4. key words ----9/08---5. Switch auditory attention back and forth 6. Follow directions 7. Understand W ?’s ----3/09---8.abstract conversation.
Intent to Communica te
Visual Exploration
Spots fans at distance; fingers in eyes; rare gleam 2.focus on object 3.Mirror ----3/08---vocalizations 2. Alternate gaze ----3/08---3. Follow 2.. Mirror gestures another’s gaze to 3. gestures determine intent. 4. sounds 3. Switch visual 5.words attention ----9/08-------9/08---6. two –word 4. visual figure ground 7. Sentences 5. search for ----3/09---object 8. logical flow. ----3/09---6. search two areas of room 7. assess space, shape and materials. Often unintelligible
Praxis Perseverative ideas; can expand w/ support Ideation ----3/08---Planning (including sensory knowledge to do this) ----9/08---Sequencing ----3/09---Execution Adaptation
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
Patterns AxisVII‐Stress
and Family
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
300.2 Type II:
rapid progress
in a comprehensive program
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 and perseverative
Sept
08:
crisis
– dysregulated
with meds and direction to the intervention, he
collaborative interaction Mar 09: we are confident that with coaching his capacities will expand can be ‘entrained’ into
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?