Download Raising a Child with A Bleeding Disorder

Raising a Child with
A Bleeding Disorder
Presented by:
Jim Messina, Ph.D.
Licensed Psychologist
St. Joseph’s Children’s Hospital
Overview of
Presentation
1.
2.
3.
Background on Bleeding Disorders
10 Tips for Coping with your Child’s Bleeding Disorder
1.
Be Informed
2.
Advocate for your child
3.
Grieve and Let Go of Dream Child
4.
Let go of guilt!
5.
Role Model Healthy Choices
6.
Empower don’t Enable!
7.
Avoid Entitlement
8.
Learn to say NO!
9.
Listen to your Child
10. Be a PATHFINDER!
Resources: www.coping.org
What are the Bleeding
Disorders?
Hemophilia A - factor VII-80%
Hemophilia B - factor IX-15%
 Von Willebrand Disease
 Other Clotting Disorders

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
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
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.
Clotting
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
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
Average life span
80
70
60
Before 1938
before 1968
1968
1938
1988
1999
50
40
30
20
10
0
Avrage
age
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 nonhemophiliac pays for health care over the
course of a year
This is a diagram of the joints
most commonly affected by
Hemophilia. It most often
occurs at the knees, hips,
ankles, shoulders, and
elbows
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
for Parents of Children
with Bleeding Disorders
1.
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
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
for Parents of Children
with Bleeding Disorders
2.
Recognize you are the 24/7
expert on your child and
advocate for your child with this
understanding!
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 child’s babysitters, daycare
providers, teachers, other school staff, and
coaches or leaders of after school activities
about when to contact you or to call 9–1–1
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.
for Parents of Children
with Bleeding Disorders
3.
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 child’s life!
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
for Parents of Children
with Bleeding Disorders
4.
Let go of your Guilt for being the
Genetic Transmitter of your child’s
condition and move on emotionally to
be better focused on your child’s
emotional, physical, social, and
interpersonal needs
What Kids with a Bleeding
Disorder Need
In addition to treatment and regular
health and dental care, your child needs
information about the disorder that’s at
his or her level
 Children with these disorders also need
to be reassured that the condition isn’t
their fault and given support for having a
chronic health problem.

for Parents of Children
with Bleeding Disorders
5.
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
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
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 child’s doctor before
starting any athletic program

for Parents of Children
with Bleeding Disorders
6.
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!
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!
for Parents of Children
with Bleeding Disorders
7.
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 child’s life – Be cautious not to
accept advice from those who indulge
you with “stuff”
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
child’s life and do not let others control
your decisions about your child’s needs

for Parents of Children
with Bleeding Disorders
8.
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!”
“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

for Parents of Children
with Bleeding Disorders
9.
Listen to your child’s verbal and
nonverbal communications about the
realities of having the bleeding
disorder and the impact it is having on
your child’s life
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
 Don’t jump to assumptions
 Do not belittle or make fun of your child
 Do not put words in your child’s mouth

for Parents of Children
with Bleeding Disorders
10.
Become a Pathfinder!










P
A
T
H
F
I
N
D
E
R
Principles
Activating
Tracking
Hugging
Formulating
Intervening
Negotiating
Discussing
Establishing
Releasing










Parenting Principles
A
T
H
F
I
N
D
E
R
Pathfinder’s
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











P
Activating Self-Esteem
T
H
F
I
N
D
E
R
Activating Self-Esteem
Developmental focus over kid’s lifetime
 Encourage personal responsibility taking
 Promote productive lifestyles
 Unconditional love and acceptance
 Life skills training and building
 Respect as individuals
 Encourage self-direction











P
A
Tracking Structures
H
F
I
N
D
E
R
Tracking Structures






Self-care
Environment
Chores
Electronics
Family phone
Time management






Finances
Recreation
Academics
Outside relationships
Family relationships
Family meetings










P
A
T
Hugging for Bonding
F
I
N
D
E
R
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











P
A
T
H
Formulating Consequences
I
N
D
E
R
Formulating Consequences
Natural consequences are best
 Logical consequences next best
 Thinking person’s 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











P
A
T
H
F
Intervening in Kids’ Losses
N
D
E
R
Intervene in Kids’ Losses
Coping with realities of bleeding
disorder
 Coping with limitations involved
 Coping with other losses common in
children’s lives today: divorce, stepparents and step-families, moving and
relocating etc











P
A
T
H
F
I
Negotiating and Advocating for Kids
D
E
R
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










P
A
T
H
F
I
N
Discussing and Communicating
E
R
Discussing & Communicating











Don’t 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 child’s actions are not
consistent with child’s words










P
A
T
H
F
I
N
D
Establishing Healthy Boundaries
R
Establishing Healthy
Boundaries









Maintain individual identity
Know difference between love and sympathy
Ignore helplessness & neediness of kids
Get rid of need to be needed
Don’t personalize child’s problems
Let go of fear of negative outcomes
No idealism or fantasy thinking
Do not get emotionally hooked
Respect each other’s personal rights










P
A
T
H
F
I
N
D
E
Releasing Shame and Guilt
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

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!

Thank You for Coming