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. Josephs Childrens Hospital

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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
• Treat siblings with equal attention and concern
• Involve Both Parents in All Aspects of Childs
  Life!
• Be a PATHFINDER!
• Resources www.coping.org

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What are the Bleeding Disorders?

• Hemophilia A - factor VIII-80 Hemophilia B -
  factor IX-15
• Von Willebrand Disease
• Other Clotting Disorders

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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

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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

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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.

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Clotting
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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

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Average Life Span of People with Hemophilia
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Average life span
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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

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

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• 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

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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

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Get Support for Yourself

• Get involved with your local chapter of the
  National Hemophilia Association, Florida
  Hemophilia Association Hemophilia Foundation of
  Greater Florida
• Join a community support program either online or
  in person
• Get involved with First Steps

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for Parents of Children with
Bleeding Disorders

• Recognize you are the 24/7 expert on your child
  and advocate for your child with this
  understanding!

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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
• Get your child to wear a medical ID bracelet or
  necklace. If your child is injured, the ID will
  alert anyone caring for your child about the
  condition.

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Use the IDEA to assist your child!

• Children with bleeding disorders are eligible for
  assistance with their educational program through
  an IEP (Individual Education Plan) according to
  the IDEA (Individuals with Disabilities Education
  Act)
• Accommodation for Physical Education to keep out
  of excessive physical contact sports
• Accommodation if a bleed occurs and need to icing
  of spot and getting the child infused with
  relevant factor
• Recognize that through a good education is your
  childs future best served

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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!

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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

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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

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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.

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for Parents of Children with
Bleeding Disorders

• 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

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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

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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

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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!

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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!

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for Parents of Children with
Bleeding Disorders

• 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
  

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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

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for Parents of Children with
Bleeding Disorders

• 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!

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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

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for Parents of Children with
Bleeding Disorders

• 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

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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

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for Parents of Children with
Bleeding Disorders

• Do not forget to give equal treatment to siblings
  so that no one feels left out! Too often siblings
  get ignored in the rush to care for and take care
  of child with the bleeding disorder. Make sure
  all children are equally attended to!

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for Parents of Children with
Bleeding Disorders

• Share parental responsibilities between the
  Mother and Father and never leave one or the
  other parents out of the decision making and
  discipline processes involved with their children

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for Parents of Children with
Bleeding Disorders

• Become a Pathfinder!

• P Principles
• A Activating
• T Tracking
• H Hugging
• F Formulating
• I Intervening
• N Negotiating
• D Discussing
• E Establishing
• R Releasing

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

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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

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

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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

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

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Tracking Structures

• Self-care
• Environment
• Chores
• Electronics
• Family phone
• Time management

• Finances
• Recreation
• Academics
• Outside relationships
• Family relationships
• Family meetings

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

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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

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

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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

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

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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

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

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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

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

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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

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

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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

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

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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

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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!

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Thank You for Coming