Behavioral Interventions in PWS

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  • 8/8/2019 Behavioral Interventions in PWS

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    Behavioral interventions inBehavioral interventions inPWSPWS

    Simona Dumitriu,

    Medic Specialist Psihiatrie Peditrica, Clinica de Psihiatrie si Neurologie

    pentru Copii si Adolescenti Timisoara

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    ChalengingChalenging behaviorbehaviorss associated with PWSassociated with PWS

    Temper outbursts (tantrums, rages)

    Food seeking and/or stealing

    Stubbornness and resistance to change,argumentativeness

    Perseveration

    Compulsive behavior and insistence on routine

    Attention-seeking and manipulative behaviour

    Skin-pickingLying and blame-shifting

    Behavioral difficulties associated with mental healthproblems.

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    QualitiesQualities

    They are known to be:

    friendly

    sociable

    kind and caring

    with a good sense of humor

    remarcable puzzle solver

    and to manifest:

    desire to please, desire to nurture

    good long-term memoryability to recognize and evaluate

    shapes and figures

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    Behaviors: Where AreBehaviors: Where Are

    TheyC

    oming From?TheyC

    oming From?

    Physicaldisturbances and

    brain changes

    naughty, bador difficult.

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    Low muscle tone

    Hypothalamus in starvation mode(feeling hunger even after a meal drivethem to eat and to seek out food)

    Sensory integration disorderLow metabolism

    Reaction to medications

    Sleep disorder

    Attachment disorder

    Perseveration, OCD

    Lack of impulse control, poor judgmentPoor body thermostat (ability to keep the body at the right temperature)

    Behaviors:Behaviors:

    Whats Really Going OnWhats Really Going On

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    Factors influencing behavior inFactors influencing behavior in

    PraderPrader--WilliWilli SyndromeSyndrome

    On a daily basis, very minor occurrences can affect behavior. For

    example:

    Proximity to meal times

    TirednessMinor change to routine

    Change in room or air temperature

    Mild teasing

    The person being unable to get their own way

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    Factors influencing behavior inFactors influencing behavior in PraderPrader--WilliWilli

    SyndromeSyndrome

    The attitudes of other people are also very important. Likely to

    have a negative effect on the person with PWSs behavior are:

    Aggressive attitudes and tones of voiceA confrontational approach

    Being overly sympathetic

    Displaying dislike of the person

    Not talking to the person

    Talking to the person too much

    Being in conflict with another parent/carer/relation -both giving different rules to the person with PWS

    Saying Dont as a means of trying to stop a person

    doing something.

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    Factors influencing behavior inFactors influencing behavior in

    PraderPrader--WilliWilli SyndromeSyndrome

    Likely to have a positive effect are:

    Firm, but loving and caring attitudesAbility to keep a sense of humor, and to see and exploit the

    funny side of a situationAbility to give clear guidelines and boundaries and stick to

    themThe maintenance of positive social contacts with the person

    Praise, and stressing the positive aspects of the personwith PWS

    Saying Do as a way of showing the person how to dosomething correctly, ( instead of saying Dont leave the door open,

    say Please shut the door)

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    Keys to Prevention ofKeys to Prevention of

    Seriou

    s Behavior Issu

    esSeriou

    s Behavior Issu

    es

    Know the warning signals

    Avoid fatigue, dehydration, hunger

    Provide healthy role modelsResolve unfair situations

    Honor commitments

    Give time countdowns and warnings

    Negotiate, use contracts and rewards

    Reasonable expectations,

    Close supervision

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    Keys to Prevention ofKeys to Prevention of

    Serious Behavior IssuesSerious Behavior Issuesy be one step ahead

    y reinforce only the good behavior

    Children act up in one environment where his or her behavior is

    rewarded and not exhibit that behavior in another environment where

    others take a firmer stance.y Keep in mind that individuals with PWS experience genuine remorse

    after an outburst of behavior, and are really sorry for what happened, but

    this does not seem to prevent them from doing it again.

    y The message shoul be broken down into small sentences or phrases to

    enable the person to absorb completely what is being saidEven those with greater intellectual ability may be unable to use theirknowledge effectively within educational, social or work situations, due to

    immature social and emotional skills

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    Temper outburstsTemper outbursts

    People with PWS are more prone to temper outbursts than people

    without PWS at similar levels of development, and that they are more

    vulnerable to having a temper outburst, as are others without PWS who

    have hypothalamic or limbic damage.

    -find the " triggers not the reason:

    Being denied food

    Being unable to get their own way (not just over food)

    A change in routine

    Someone else using their possessions

    Attention-seekingTiredness

    Confusion or misunderstandings

    Teasing

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    Sometimes, even though every effort has been made toSometimes, even though every effort has been made to

    prevent an outburst, one will still occur. Then it really is aprevent an outburst, one will still occur. Then it really is a

    case of weathering the stormcase of weathering the storm

    Distract attention away from the subject or situation

    Praise the individual for something they have done, orremind them how well they coped in a previous, similar,situation.

    Suggest the person goes to a quiet place for a few

    minutes to listen to relaxation tapes or soothing music(especially if you suspect tiredness is a factor)

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    Sometimes, even though every effort has been made toSometimes, even though every effort has been made to

    prevent an outburst, one will still occur. Then it really is aprevent an outburst, one will still occur. Then it really is a

    case of weathering the stormcase of weathering the storm

    There are several techniques which can be tried to help the person to manage their

    outbursts. Knowledge of the person and how different things affect them is essential

    Dont wind up the situation, and dont put ideas into their head

    by saying things like, Dont you dare start screaming now! or

    Stop acting like a baby! It is often better to make a non-

    confrontational remark, or say nothing at all.

    Keep very calm and cool. If possible, bring someone else in to

    take over.

    Do not start an argument, and say as little as possible aboutthe situation which has triggered the wobble.

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    BBasicasic anger managementanger management

    techniqu

    estechniqu

    esRelaxation tehniques (tapes, walking, dancing, music,hand-held

    computers)

    Identify triggers

    Get rid of angry feelings

    Design aids such as pictures and symbols to help remind people what

    to do

    Sensations,physicalfeelings

    emotions behavior

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    Food seekingFood seeking

    In many, this seems to be an addiction to

    food, just as some people are addicted to alcohol or

    drugs, with similar outcomes if they do not get it.

    Even with the most alert parents and carers,

    many people with PWS can still manage to access

    food, sometimes in the most devious of ways

    body incorrectly interprets the absence of

    satiation as starvation, and therefore,

    paradoxically, this syndrome should be

    redefined as one of starvation that manifests as

    obesity in a food-rich environment

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    Food seekingFood seeking

    - this behavior is the consequence of a physical urge not a bad behavior

    -theft is a difficult concept for children

    ContractIf your weight goes up, you will not be able to do cooking at home/school.

    Always stick to what you have written down and agreed will be the consequence of food

    stealing

    Do not use food as a revard for good behavior

    Validate the emotion of the child

    I observed you were upset and I know that you took that chocolate.

    Can you tell me what happened?

    If the person has stolen food or money off someone else, insist it is paid back,

    and an apology is made.

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    ObsessiveObsessive--compulsivecompulsive

    behaviourbehaviour

    The source of these behaviors is the intrusion in the mind of frequent

    inacceptable thoughts

    They feel themselves responsible for a catastrophe and they act trying

    excessively to resist, to revert or to reassureIn time the solution become a problem

    It can be on a relatively minor scale, such as collecting brochures or

    doing things in a particular order, but it can become more serious if

    the obsession is centred on another person, writing and receiving

    letters, and picking at clothing.

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    I am hungry, I could takea cake. Noone will know

    This will mean that I am athief

    anxiety

    I lett know mom whatcross to my mind

    I try to eliminate thethought

    Compulsions

    ObsessiveObsessive--compulsivecompulsive

    behaviourbehaviour

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    Managing obsessive behaviourManaging obsessive behaviour

    A greater range of activities and things to do, especially social activities

    and meeting new people.

    Try to channel it into more positive activities eg weeding the garden,

    craftwork.

    With staff at schools, colleges, day centers and residential homes,change the key worker regularly, or use several people as key

    workers. Ensure the person knows you will be doing this in

    advance.

    Try not to say things like Dont spend so much time with ...

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    What I found to beuseful

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    We can have fun!We can have fun!

    Thanks you!Thanks you!