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8/8/2019 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!