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Raising a Child with A Bleeding Disorder

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Raising a Child with A Bleeding Disorder Presented by: Jim Messina, Ph.D. Licensed Psychologist St. Joseph s Children s Hospital Overview of Presentation ... – PowerPoint PPT presentation

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Title: Raising a Child with A Bleeding Disorder


1
Raising a Child with A Bleeding Disorder
  • Presented by
  • Jim Messina, Ph.D. Licensed Psychologist
  • St. Josephs Childrens Hospital

2
Overview of Presentation
  • Background on Bleeding Disorders
  • 10 Tips for Coping with your Childs Bleeding
    Disorder
  • Be Informed
  • Advocate for your child
  • Grieve and Let Go of Dream Child
  • Let go of guilt!
  • Role Model Healthy Choices
  • Empower dont Enable!
  • Avoid Entitlement
  • Learn to say NO!
  • Listen to your Child
  • Be a PATHFINDER!
  • Resources www.coping.org

3
What are the Bleeding Disorders?
  • Hemophilia A - factor VII-80 Hemophilia B -
    factor IX-15
  • Von Willebrand Disease
  • Other Clotting Disorders

4
Signs a Child has a Bleeding Disorder
  • When a baby starts to crawl the parents may
    notice bruises on stomach, chest, buttock, and
    back
  • The baby may also be fussy, not wanting to walk
    or crawl
  • Other symptoms include
  • long nosebleeds
  • excessive bleeding from biting down on the lips
    or tongue
  • excessive bleeding following a tooth extraction
  • excessive bleeding following surgery
  • blood in the urine

5
What is Hemophilia?
  • There are two types of Hemophilia, A and B
  • Both are caused by deficiencies in the amount of
    clotting factor in the blood (VIII or IX)
  • When the blood does not have enough of one of
    these or is missing one clotting factor, the
    bleeding may end very slowly or may not stop at
    all
  • The most dangerous part about having Hemophilia
    is internal bleeding - If internal bleeding is
    left untreated it can lead to deformity,
    disability or even death
  • In people with Hemophilia the bleeding continues
    until either it clots long enough for it to heal
    or the person will bleed to death

6
What is von Willebrand Disease?
  • Von Willebrand disease is caused by a deficiency
    or an abnormality in a protein called von
    Willebrand factor and is characterized by
    prolonged bleeding
  • A substance in the blood known as von Willebrand
    factor helps platelets stick to damaged blood
    vessels
  • Another function of von Willebrand factor is to
    carry the important clotting protein, called
    factor VIII, in the blood
  • People with von Willebrand disease have a problem
    with one or both of these blood components.

7
Clotting
8
Genetic Transmission of Hemophilia A B
  • Hemophilia is a genetic disease passed on by the
    X chromosome (the chromosome that carries the
    clotting factor)
  • If a boy gets the X chromosome that carries the
    hemophilia gene he will get hemophilia
  • If a girl gets the gene, she will become the
    carrier of the gene, not showing symptoms of the
    disease though she may have a long or heavy
    menstrual cycle
  • The carrier has a 50 chance of passing the gene
    on to her children every time she gets pregnant

9
(No Transcript)
10
Average Life Span of People with Hemophilia
Year Average age at the time of death Treatments available at time
Before 1938 11 none
Before 1968 20 Plasma or Whole blood transfusions
1968 Less than 40 Cryoprecipitate
1983 64 Freeze dried clotting factors
1988 40 ( impact of aids) Same
1999 and on Normal life span Factors produced by genetic engineering
11
Average life span
12
Medical Costs of Having a Child with Hemophilia
  • Because Hemophilia is a life long disease your
    child has a need for life long treatment
  • It will cost any where from 75,000 to 125,000 a
    year to treat severe hemophilia
  • That is approximately 31 times an average
    non-hemophiliac pays for health care over the
    course of a year

13
  • This is a diagram of the joints most commonly
    affected by Hemophilia. It most often occurs at
    the knees, hips, ankles, shoulders, and elbows

14
  • The most common muscles that bleed with
    Hemophilia are those in the the upper arm, upper
    leg (front and back), the calf and the front of
    the groin

15
for Parents of Children with
Bleeding Disorders
  • Be as informed and current as you can about the
    Bleeding Disorder! Know the language and issues
    involved so that you can know what to do, where
    to go, and whom to get involved. Look at
    www.coping.org for online internet resources
    available for you

16
Get Support for Yourself
  • Get involved with your local chapter of the
    Florida Hemophilia Association
  • Join a community support program either online or
    in person
  • Get involved with First Steps

17
for Parents of Children with
Bleeding Disorders
  1. Recognize you are the 24/7 expert on your child
    and advocate for your child with this
    understanding!

18
Precautions to Take with Other Caregivers of Child
  • Be sure that anyone who is responsible for your
    child knows that he or she has a bleeding
    disorder
  • Talk with your childs babysitters, daycare
    providers, teachers, other school staff, and
    coaches or leaders of after school activities
    about when to contact you or to call 911 for
    emergency care
  • Consider having your child wear a medical ID
    bracelet or necklace. If your child is injured,
    the ID will alert anyone caring for your child
    about the condition.

19
for Parents of Children with
Bleeding Disorders
  • Grieve and let go of your dreamed for child and
    accept your child for who he or she is including
    the limitations of the bleeding disorder which is
    involved in your childs life!

20
Preventive Measures for with Bleeding Disorders
  • Learn how to examine your child for and recognize
    signs of bleeding as well as prepare for bleeding
    episodes when they do occur
  • Keep a cold pack in the freezer ready to use as
    directed or to take along with you to treat bumps
    and bruises
  • Popsicles work fine when there is minor bleeding
    in the mouth
  • You also might want to keep a bag ready to go
    with items you will need if you must take your
    child to the emergency room or elsewhere

21
for Parents of Children with
Bleeding Disorders
  • Let go of your Guilt for being the Genetic
    Transmitter of your childs condition and move on
    emotionally to be better focused on your childs
    emotional, physical, social, and interpersonal
    needs

22
What Kids with a Bleeding Disorder Need
  • In addition to treatment and regular health and
    dental care, your child needs information about
    the disorder thats at his or her level
  • Children with these disorders also need to be
    reassured that the condition isnt their fault
    and given support for having a chronic health
    problem.

23
for Parents of Children with
Bleeding Disorders
  1. Reorganize your life and interests around role
    modeling of a life which is healthy for your
    child Exercise, Athletics, Hobbies,
    Socialization, Spirituality, Community
    Involvements, Academics, and peer networks

24
Protective Measures for Kids with Hemophilia
  • Kids with hemophilia need extra protection from
    things in the home and elsewhere that could cause
    injuries and lead to bleeding
  • Protect Toddlers with kneepads, elbow pads, and
    protective helmets
  • Be sure to use the safety belts and straps in
    highchairs, car seats, and strollers to protect
    the child from falls
  • Remove furniture with sharp corners or pad them
    while the child is a toddler
  • Keep out of reach or locked away small and sharp
    objects and other items that could cause bleeding
    or harm
  • Check play equipment and outdoor play areas for
    possible hazards
  • All children should wear safety helmets when
    riding tricycles or bicycles

25
Exercises and Activities for Kids with Bleeding
Disorders
  • Some safe exercises or activities are swimming,
    baseball, track, tennis, biking, and walking
  • Football, hockey, wrestling, and weightlifting
    (heavy weights) are not safe activities if one
    has a Bleeding Disorder
  • Always check with childs doctor before starting
    any athletic program

26
for Parents of Children with
Bleeding Disorders
  • Empower your child! Do not enable your child.
    Children with Bleeding Disorders need to be
    encouraged to become all that they are capable
    of becoming and not to fall into the trap of
    feeling sorry for themselves and limiting their
    vision of whom they can become in this world!

27
Children with Bleeding Disorders Can lead Normal
Lives!
  • Aside from the precautions involved concerning
    bleeding, there is nothing else which children
    with a bleeding disorder cannot do! So encourage
    them to do so!
  • DO NOT allow your children to feel sorry for
    themselves! DO NOT fall into being over
    sympathetic with them-Push them to stay in the
    mainstream of life!
  • Require your child to become a personally
    responsible human being by being a Pathfinder to
    your child!

28
for Parents of Children with
Bleeding Disorders
  1. Do not fall into the Entitlement Trap! There
    are so many perks from provider companies these
    days like parties, dinners, get aways, camps,
    tickets to sporting events etc, that one can fall
    into the trap of expecting something every time
    there is a bleeding disorder related happening
    in your childs life Be cautious not to accept
    advice from those who indulge you with stuff

29
The Importance of Maintaining Integrity!
  • We know that it is costly to provide for the
    medical well being of your child with a bleeding
    disorder
  • We know there are many organizations out there
    wanting your business
  • You are the boss of yourself and your childs
    life and do not let others control your decisions
    about your childs needs

30
for Parents of Children with
Bleeding Disorders
  1. Learn to say NO! to your child so that limits
    and boundaries are clearly set and maintained to
    insure that your child does not become a spoiled
    brat!

31
Spoiled Brat Prevention Strategies
  • Establish and enforce clear, mutually agreed
    upon, and recorded limits and boundaries
  • Put limits on time focused solely on kids
  • Put limits on money spent only on kids
  • Put limits on use of external resources used
    only on kids
  • Put limits on use of internal resources used only
    on kids
  • Put limits on emotions spent only on kids

32
for Parents of Children with
Bleeding Disorders
  1. Listen to your childs verbal and nonverbal
    communications about the realities of having the
    bleeding disorder and the impact it is having on
    your childs life

33
How to Listen to Bleeding Disorder Reaction
from Child
  • Listen effectively
  • Focus on feelings
  • Clarify what child is saying
  • Be rational in all discussions
  • Do not make comparisons to other kids
  • Dont jump to assumptions
  • Do not belittle or make fun of your child
  • Do not put words in your childs mouth

34
for Parents of Children with
Bleeding Disorders
  1. Become a Pathfinder!
  • P Principles
  • A Activating
  • T Tracking
  • H Hugging
  • F Formulating
  • I Intervening
  • N Negotiating
  • D Discussing
  • E Establishing
  • R Releasing

35
  • Parenting Principles
  • A
  • T
  • H
  • F
  • I
  • N
  • D
  • E
  • R

36
Pathfinders Foundational Principle
  • Be CONSISTENT! Get spouse, relatives and friends
    on board with Pathfinder Parenting Principles!
  • TEA System Based Principles
  • Thoughts - must get rational
  • Emotions - must feel more rational
  • Actions - take Actions only after Thoughts and
    Emotions are rational and in synch

37
  • P
  • Activating Self-Esteem
  • T
  • H
  • F
  • I
  • N
  • D
  • E
  • R

38
Activating Self-Esteem
  • Developmental focus over kids lifetime
  • Encourage personal responsibility taking
  • Promote productive lifestyles
  • Unconditional love and acceptance
  • Life skills training and building
  • Respect as individuals
  • Encourage self-direction

39
  • P
  • A
  • Tracking Structures
  • H
  • F
  • I
  • N
  • D
  • E
  • R

40
Tracking Structures
  • Self-care
  • Environment
  • Chores
  • Electronics
  • Family phone
  • Time management
  • Finances
  • Recreation
  • Academics
  • Outside relationships
  • Family relationships
  • Family meetings

41
  • P
  • A
  • T
  • Hugging for Bonding
  • F
  • I
  • N
  • D
  • E
  • R

42
Hugging for Bonding
  • Build sense of security
  • Give sense of being wanted
  • Establish healthy self-worth
  • Use physical touch and hugs
  • Use verbal touches and hugs
  • Transmit unconditional love
  • Create emotional connectedness

43
  • P
  • A
  • T
  • H
  • Formulating Consequences
  • I
  • N
  • D
  • E
  • R

44
Formulating Consequences
  • Natural consequences are best
  • Logical consequences next best
  • Thinking persons method of discipline
  • Enforce the consequences with no screaming,
    yelling, ranting or raving
  • Get them recognized, agreed to, contracted,
    outlined and recorded
  • Then remind and enforce them

45
  • P
  • A
  • T
  • H
  • F
  • Intervening in Kids Losses
  • N
  • D
  • E
  • R

46
Intervene in Kids Losses
  • Coping with realities of bleeding disorder
  • Coping with limitations involved
  • Coping with other losses common in childrens
    lives today divorce, step- parents and
    step-families, moving and relocating etc

47
  • P
  • A
  • T
  • H
  • F
  • I
  • Negotiating and Advocating for Kids
  • D
  • E
  • R

48
Negotiating Advocating
  • Linkage, Brokering, Mobilization, Activating
  • teachers and school officials
  • coaches and activity leaders
  • community officials
  • members of extended family
  • non-supportive, non-pathfinder parent

49
  • P
  • A
  • T
  • H
  • F
  • I
  • N
  • Discussing and Communicating
  • E
  • R

50
Discussing Communicating
  • Dont compete as to who knows more
  • Respond with understanding
  • Make time for discussions with child
  • Use I statements not You statements
  • Maintain sense of humor with child
  • Describe behaviors not the child as being
    unacceptable
  • Stay focused on the here and now
  • Control temper in discussions
  • Use open ended questions
  • Do not use door closer statements
  • Help point out when childs actions are not
    consistent with childs words

51
  • P
  • A
  • T
  • H
  • F
  • I
  • N
  • D
  • Establishing Healthy Boundaries
  • R

52
Establishing Healthy Boundaries
  • Maintain individual identity
  • Know difference between love and sympathy
  • Ignore helplessness neediness of kids
  • Get rid of need to be needed
  • Dont personalize childs problems
  • Let go of fear of negative outcomes
  • No idealism or fantasy thinking
  • Do not get emotionally hooked
  • Respect each others personal rights

53
  • P
  • A
  • T
  • H
  • F
  • I
  • N
  • D
  • E
  • Releasing Shame and Guilt

54
Releasing Shame Guilt
  • Let go of anger in healthy ways
  • Let go of need to control, fix change
  • Let go of guilt for not being perfect
  • Let go of shame for past failings
  • Self forgiveness for mistakes you have made with
    kids

55
What Next?
  • Have a look at Pathfinder Parenting and the other
    Parent Tool Box resources for you at
    www.coping.org
  • Get involved with your local chapter and support
    groups
  • Make a commitment to become the best parent you
    can become for your children!

56
Thank You for Coming
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