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. Background on Bleeding Disorders2. 10 Tips for Coping with your Child’s Bleeding Disorder

1. Be Informed2. Advocate for your child3. Grieve and Let Go of Dream Child4. Let go of guilt!5. Role Model Healthy Choices6. Empower don’t Enable!7. Avoid Entitlement8. Learn to say NO!9. Listen to your Child10. Be a PATHFINDER!

3. 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

0

10

20

30

40

50

60

70

80

Avrageage

Before 1938

before 1968

1968

1938

1988

1999

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

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

6.6. EmpowerEmpower 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

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

10. Become a Pathfinder!

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, step- parents 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