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    Asilomar 2009

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    Assistant Clinical Professor,

    Dept of Psychiatry, University ofCalifornia at San Diego School of

    Medicine

    Faculty, Interdisciplinary Council onDevelopmental and Learning Disorders

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    The Southern CaliforniaDIR/Floortime

    Regional InstitutePasadena, Californiabegins October, 2009

    Josh Feder, MD Diane Cullinane, [email protected]

    [email protected]

    Mona Delahooke, PhD Pat Marquart, MFT [email protected] [email protected]

    mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]
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    ICDL Faculty minimal - review of clinical write ups,travel and room for meetings, token honorarium for co-writing and running Southern California Institute

    NIMH/ Duke University minimal administrative time forpharmacogenetic research

    NIH R21 grant/ San Diego BRIDGE Collaborative minimal token honorarium for ongoing consultation

    and participation

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    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 boyand a diagnostic system (20 min)

    your stories(15 min)

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    all slides will be posted on

    circlestretch.blogspot.comStop me on the blue dots!

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    Quick history: Magda Campbell: haloperidol helpssocial learning; others: methylphenidate causesside effects without benefit.

    Today: we try to treat target symptoms, carefully,based on responses in other conditions tomedications.

    Takes time to assess, and re-assess.

    Big issues: marketing, side effects, and efficacy

    studies. Efficiency study: CAPTN (Duke: John March, el al

    Im an et al).

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    Most people consider meds becausethey feel stuck, maybe desperateEmergencies: aggression, depression,

    others?Lack of progress

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    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.

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    regulatory issues/ motor and sensory areasaddressed

    engagement and reciprocity (vs. focus on

    compliance) language/ communicationcognition/ learningdaily living skills followed by broader and

    broader areas of life skills, from school andplayground to vocational skills.

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    Are we asking too much of the child?

    Of the family?Of the school?

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    Low Support - Low Expectation

    (neglect)

    Low Support - High Expectation

    (Just do it)

    High Support - Low Expectation

    (walking on eggshells, more andmore constrictede.g. gamers)

    High Support - HighExpectation

    (respectful coaching)

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    Is the program adequate?Will they change the childs brain and

    actually fix it?Will they injure the child?What should I expect?

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    Losing time while pulling the programtogetherDoing as much as possibleAwakenings should we go for a

    miracle?

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    We do not know enough to say you reallyshould medicate

    If there is no emergency, you have moretime to think about it

    When parents differ, it can be anopportunity for more thoughtful planning

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    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. alongwith complete history, physical, MSE, and collateralinformation.

    Availability - doctor MUST stay in touch with family andschool

    Rapid, large, or multiple changes are often problematic Grid target symptoms vs. possible meds and fill in possible

    +s & -s

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    Easy for the treatment team to react and overusemedications

    Side effects often create significant difficulties,e.g., behavioral activation (SSRIs), increasedperseveration (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 sideeffects.

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    elements of informed consent

    the process of informed consent nearly everything is experimental we have to track this fairly closely

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    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 USEOF MEDICATIONS IS VOLUNTARY AND I PLAN TO WORK WITH THE DOCTOR TO MAKE THE BEST USEOF THESE.

    I CONSENT TO THE TREATMENT. IF MEDICATION IS PART OF THE TREATMENT PLAN AND I WILLREQUEST 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

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    Find a doctor you like and feel you can work with Keep the doctor in the loop Dont overwhelm the doctor with data

    Think carefully before rapid, large changesin dose or before changing more thing thanone thing at a time.

    Respectfully offer resources dont expect yourdoctor will read a book for you, but do expect your

    doctor is interested in other opinions from otherdoctors

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    Look for Basic Competence: APBN Board CertifiedChild and Adolescent Psychiatrists were checkedfor competence in assessing autism, and for useof collateral information from family, school, and

    other professionals.

    Look for Honesty: AACAP = a promise to beethical and do their best

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    Helping parents determine when medication maybe 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 manageableplan

    Good Luck!

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    Can Medications Help Kids HaveBetter,

    More Productive RelationshipsWith Us?

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    Co-regulation Engagement Circles Flow

    Symbolic thinking Logical social problem solvingMulti-causal thinking Grey area thinking Reflective thinking, stable sense of self, internal

    standard

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    Sensory processingPostural control/ motor planningReceptive communication

    Expressive communicationVisual-spatial functionPraxis: ideation, planning, sequencing,

    execution, adaptation

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    DIR is the main courseMeds are the pickles

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    A Good Enough WizardUnpredictable PotionsNefarious Forces:

    syndromes & systems(affecting schools, social services, and industry)

    andtransferences & countertransferences

    (invisible and everpresent)

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    Peace, from nearly anything that ailsyouRare Miraculous Awakenings

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    SeizuresWeight gainInsulin resistanceTardive DyskinesiaNeuroleptic Malignant Syndrome

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    perseveration, anxiety, depression mayimprove

    often the benefits are outweighed by

    overactivity, inattention, or even mania,rarely seizures, and sweating as aprecursor to serotonin syndrome

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    For mood stabilization, oh, and fewer seizures Well Mrs Farkel Liver, pancreas, weight gain,

    sedation, incontinence, drooling, and if you everwant to have babies beware of PCOS, loss of white

    cells, bleeding problemssTegretols blood and cardiac problems Lamictals scathing rash, and unweildy interaction

    with DepakoteTopamax: wt loss, but language loss; unreliability,

    decreased sweating Others

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    The plan that lived, due to better focusand less overactivity

    Ragged sleep, ratty moods, thin waifs with

    sunken eyes, stupors, tics, and occasionalparanoia; cardiac and growth issues

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    Reliable anxiolytic, helpful for seizuresReliable loss of memory and motor control,

    with inability to benefit from learning and

    high risk of falling and automobileaccidents

    Addiction is rampantALL MEMBERS OF THIS CLASS

    (BENZODIAZEPINES) ARE PROBLEMATIC

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    The number one cause of death byantidepressants due to overdose in the daysbefore SSRIs

    CARDIOTOXIC: have people LOCK THEM UP!

    and get serial EKGs w/ Cardiologist readings

    Still, they are as effective or more effective thanany other antidepressants we have, and

    clomipramine is more effective, generally thanSSRIs for OCD.

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    Find a good enough Wizard, one whoknows the stories, good and bad, and who

    listens to you and your people

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    case synopsisvideo clipsanalysisdiscussion

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    K Searcy - ?Meds for anxiety in autism, Jan2008

    Failure to make gains despite massiveservices

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    Autism SAFETY fingers in eyes extremely perseverative (fans) anxiety

    over-activity tantrums language hard to take him out, (esp. dad)

    ?seizures.

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    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 didnt stick

    well

    13 mo: sudden stimming, classic ASD, but stillcuddling

    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 helpsanxiety; Fall 08 Metadate CD 15 mg.

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    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)

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    Axis I Primary Diagnosis Axis II - Functional Emotional Developmental

    Capacities Axis IIIRegulatorySensory Processing Capacities

    AxisIVLanguage Capacities AxisVVisuospatial Capacities AxisVIChildCaregiver and Family Patterns AxisVIIStress

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    Axis I Primary Diagnosis

    Axis II - Functional EmotionalDevelopmental Capacities

    Axis IIIRegulatorySensory Processing Capacities AxisIVLanguage Capacities AxisVVisuospatial Capacities AxisVIChildCaregiver and Family Patterns AxisVIIStress

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    Notthere

    Barely Islands Expands

    Comesback

    Ok ifnotstressed

    Ok forage

    Co-regulate

    3/08 9/08 3/09

    Engage 3/08 9/08 3/09

    Circles3/08 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

    Multicausal

    3/08,3/07,3/08

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

    Reflective 3/08,3/07,3/08

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    03/08 moments ofgleamand a couple of circles when I getplayfully in his way unplug the fan or stop him fromcrawling 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 flow; malingotoya making a song somewhat symbolic

    3/09 calmer and able to cuddle nearly the whole session with

    mom, makes possible coaching mom for more elaborationof circles and some flow with her; can talk about toes, but notreally more symbolic per se. (After this we add dad, sis, anddad coaching)

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    Axis I Primary Diagnosis Axis II - Functional Emotional Developmental Capacities

    Axis IIIRegulatorySensory ProcessingCapacities

    Axis IVLanguage CapacitiesAxis VVisuospatial Capacities AxisVIChildCaregiver and Family Patterns AxisVIIStress

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    Sensory

    Postural Response toCommunication

    Intent toCommunicate

    VisualExploration

    Praxis -

    Sensory

    seeking,

    distractible

    Auditory

    Visual

    Tactile

    Vestibular

    Proprio-

    ceptive

    TasteOdor

    Best when core is

    supported

    1 indicate desires

    ----3/08----

    2. mirror gestures

    3. imitate gesture

    4. Imitate with

    purpose.

    ----9/08----

    5. Obtain desires6. interact:

    - exploration

    -purposeful

    ----3/09----

    - self help

    -interactions

    Cues into important

    words1.Orient

    ----3/08----2. key tones3. key gestures4. key words

    ----9/08----5. Switch auditoryattention back and

    forth6. Follow directions7. Understand W ?s ----3/09----8.abstractconversation.

    Often

    unintelligible

    3.Mirror

    vocalizations

    ----3/08----

    2.. Mirror gestures

    3. gestures

    4. sounds

    5.words----9/08----

    6. two word

    7. Sentences

    ----3/09----

    8. logical flow.

    Spots fans at

    distance; fingersin eyes; rare gleam2.focus on object

    ----3/08----2. Alternate gaze3. Followanothers gaze todetermine intent.3. Switch visual

    attention----9/08----4. visual figureground5. search forobject----3/09----

    6. search twoareas of room7. assess space,

    shape andmaterials.

    Perseverative

    ideas; can expand

    w/ support

    Ideation

    ----3/08----

    Planning

    (including sensory

    knowledge to do

    this)

    ----9/08----Sequencing

    ----3/09----

    Execution

    Adaptation

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    Axis I Primary Diagnosis Axis II - Functional Emotional Developmental Capacities Axis IIIRegulatorySensory Processing Capacities AxisIVLanguage Capacities AxisVVisuospatial Capacities

    AxisVIChildCaregiver and FamilyPatternsAxisVIIStress

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    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 becomesmore connected.

    MANY OF OUR FAMILIES HAVE A FORM OF PTSD!

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    Axis I Primary Diagnosis Axis II - Functional Emotional Developmental Capacities Axis IIIRegulatorySensory Processing Capacities AxisIVLanguage Capacities AxisVVisuospatial Capacities AxisVIChildCaregiver and Family Patterns AxisVIIStress

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    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 ideasmakesrapid progress in a comprehensive program

    300.2 Type II: Purposeful Problem Solving, with Constrictions; as above but only fleetingsocial problem solvingtend 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, steadyprogress possible, maybe with gradual use of words or phrases

    300.4 Type IV: Aimless and Unpurposful;multiple regressions, maybe more neurologicchallenges, very very slow progress

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    ICDL DIR DMIC AXIS I 300.3 NDRC level III:

    slow progress

    when he has lots of support.

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    What works: early on getting in the way, modifyingperseveration, getting him on his back, fanning him, graduallymore able to follow his lead, extending interactions.

    What doesnt 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 orusing shared experiences (little piggies); position and physicalsupport are still key to his ability to sustain interaction.

    Medications have been very helpful to this child, allowing himto respond to developmentally supportive intervention.

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    Mar 08: we are in a dangerous crisis dysregulatedand perseverative

    Sept 08: with meds and direction to the intervention, hecan be entrained into

    collaborative interactionMar 09: we are confident that with coaching hiscapacities will expand

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    Medication management, and more

    Guiding the whole team, once and twiceremoved.

    As the prescribing physician I haveresponsibility, accountability, and leverage- they come back

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    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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