• Bruises
• Joints
• Nose 
• Mouth 
• Deep Muscle Bleeds

• Head 
• Eye 
• Neck/Throat 
• Abdominal/Stomach
• Kidney/Bladder

• Your child may develop bruises at the site of a shot. Ice helps reduce the bruising and ease the discomfort. In cases of severe hemophilia, the doctor may suggest giving some shots with a small needle under the skin or giving the child a factor treatment before the shots. Most immunizations are performed subcutaneously (beneath the skin) to avoid bleeding. You should check with your physician or HTC professional to find out whether this is possible. 

• The National Hemophilia Foundation recommends that your child receive the hepatitis B vaccine (recommended for all children) and the hepatitis A vaccine (above two years old).

• Help your child stay fit and trim. Extra weight puts stress on the joints.
• There is no evidence that any particular food will stop bleeding episodes or form blood clots.

Safety

• Tape or glue foam pads to the sharp edges of counters and coffee tables. Or better yet, remove coffee tables while your child is learning to walk. Foam padding on walkers will help protect elbows.
• Gates blocking stairs are a good way to avoid falls.
• Netted crib covers assist in avoiding falls out of bed.
• Place non-skid strips on the floor of the shower or bathtub. Help your child in and out of the tub until the child is old enough to manage without falling.
• Sew padding into the knees and seat of your toddler's pants to reduce bruising.
• Make sure your toddler wears shoes to protect his feet. High top sneakers provide good ankle support.
• Athletic elbow and knee pads also help to protect against joint bleeds caused by falls.
• Consider getting your child a Big Wheel tricycle. They are generally more stable and closer to the ground than regular tricycles.
• Make sure your child wears a helmet when skating, cycling, etc.
• Avoid physical activity that involves rough body contact such as wrestling and hockey.
• Enroll your child in the MedicAlert system. To order an emblem (bracelet or necklace for older children) or for more information call MedicAlert at (800) 432-5378.
• For more information about safety issues, request the information for parents of a child newly diagnosed with a bleeding disorder from NHF.
• Talk with other parents about their ideas about safety measures.

Dental Care

• Teach your child to floss regularly and to brush his teeth with a soft brush. Flossing may cause a small amount of blood to ooze from the gums at first, but as the gums get healthier, the oozing stops.
• Inform your dentist of your child's hemophilia. Offer to put him or her in touch with your hemophilia provider if he or she has any questions about special needs. Always question your child's dentist to make sure he or she knows about hemophilia and is willing to learn from hemophilia specialists.
• Contact your doctor or HTC before any dental procedures (e.g., fillings, tooth extractions, etc.) to coordinate treatment. If your child has severe hemophilia, the doctor may want him to have factor treatment before the dental procedure. Factor treatment is generally required for any "invasive" procedure. Sometimes extensive dental work requires a trip to the operating room for treatments under anesthesia.
• Talk to the staff at your HTC if you have specific questions about your child's dental care.

Child Raising
Raising a child is one of life's major challenges. A child with hemophilia adds even more complexity. This section answers some frequently asked questions and encourages parents to trust their instincts. For more information or to find out how to contact other parents of affected children, call NHF at 800-42-HANDI.
Always remember that "normal" is different for each child. If you have concerns about your child's development, talk with his child care providers, teachers, doctor and/or HTC.

INFANTS
Crying is one of the ways your baby communicates. Before long, you will be able to tell the difference between "hungry" cries, "sleepy" cries, "wet" cries, etc. Pay special attention to the "hurt" cries. Spontaneous bleeds are rare in infants, but when they do occur, they cause discomfort. When this happens the baby cries, is fussy, and avoids the hurt limb. If you think your baby has a bleed, consult your doctor or HTC.
During infancy, babies learn whether to trust the world. Every time he is fed when he is hungry, comforted when he is scared or hurt, and changed when he is wet, he learns the world is safe and the people around him are looking out for him. When you attend to your crying baby, you are giving him what he needs, teaching him the world-at least his little part of it-is a friendly place that hears and responds to him.

PRESCHOOLERS
Preschool children are egocentric and possess "magical thinking." In other words, they think everything happens because of them, and they think their thoughts have the power to make things happen. For instance, a preschooler may think he has to take factor treatment as punishment for being bad. He may ignore symptoms of a bleed, thinking that if he wishes hard enough, it will magically go away.
Offer your child easy-to-understand information about hemophilia and remind him that factor treatments stop the bleeding and help him feel better. Explain how the treatments make the pain go away so he can play and have fun again.

Avoid threatening your child with factor treatment, e.g. "If you don't cut that out you'll have to get a shot." Instead, help your child understand that some activities are more likely than others to cause bleeding. Even though a preschool child can tell you if he is hurting, it is still important to keep an eye on him for symptoms of bleeding such as limping, holding one limb in a "bent" position, etc.

During the preschool years, you can save your child and yourself a lot of frustration by avoiding questions with "yes" or "no" answers, when there is no choice. For instance, rather than asking your child, "Shall we go to the doctor for your treatment?" you might say, "We are going to the doctor to stop the bleed so you'll feel better. Which toy or lap activity would you like to take to the doctor's office?"

SCHOOL-AGED CHILDREN
By the time they reach school age, children are generally capable of thinking logically and seeing cause and effect. A school aged child will be able to report when he has a bleed. He will also start to understand that certain activities are more likely to cause bleeds than others and can be encouraged to be cautious about those activities.

At this age, the child also start to worry about adult feelings. If you react to his bleeds with anger, fear, and frustration, he may try to "protect" you by not telling you he is bleeding until the pain becomes hard to bear.
Respond to bleeds in a matter-of-fact, reassuring way. For instance, you might say to your child, "I'm sorry you're hurt, and I'm glad you told me you had a bleed. Let's get your treatment started so you can feel better soon."

During this stage, it can be especially easy for parents to set too few or too many limits. Permissive parents may feel sorry for their child and try to "make it up to him" by not setting appropriate limits. Protective parents may set too many limits and monitor their child's every move in an effort to keep him safe. School-aged children need both clear and consistent rules and the freedom to develop their own interests and abilities. For instance, establish a rule that your child and his playmates may not hit each other. As long as no one is hitting, avoid jumping in to settle every argument that comes up. Let your child experiment with different ways to resolve conflict.

School-aged children with hemophilia belong in regular classrooms and take part in almost every activity with peers.

ADOLESCENTS
By the time he is a teenager, your child will probably know almost as much about hemophilia as you do. If he is on a home treatment program, he is doing his own factor infusions. He may ask to go to doctor's appointments alone or to speak privately with the care team. If he doesn't ask, offer him the opportunity, so he learns to take increasing responsibility for his own health.

During his teenage years, your son is trying to figure out who he is and what he wants in life. The opinions of his friends are very important to him. He may be upset if his friends think the factor treatments are "gross" or tease him for choosing not to participate in some activities. Having friends his age in the hemophilia community helps him feel less different. Contact your HTC or the local chapter of the National Hemophilia Foundation to get information about activities and events for teenagers with hemophilia in your area, or ask your HTC to put you in touch with other families who have teenagers with hemophilia.

If your teenager seems unusually upset, if his behavior changes dramatically, or if he talks about wanting to hurt or kill himself or someone else, professional counseling is in order. Talk to trusted friends, the social worker at the HTC, or ask your doctor for a referral to a counselor who is skilled in working with teenagers.

Complications

INHIBITORS
In some patients with hemophilia, the immune system produces an antibody that inhibits the action of replacement blood products and prevents clot formation. This antibody is known as an inhibitor. The presence of an inhibitor makes the treatment of bleeding episodes more difficult. An inhibitor destroys the clotting factor before it has a chance to stop the bleeding. The reason inhibitors develop is unknown, but it is not related to the number of treatments your child receives. Inhibitors usually occur in the first 5-10 years of life.
For more information, please visit our inhibitors section by clicking here.

JOINT DAMAGE
One of the major complications of hemophilia is joint damage or "hemophilic arthropathy" that can occur when there is bleeding into joints. This is the most common clinical complication of hemophilia. Bleeding into knees, elbows, ankles, shoulders, and hips can lead to chronic swelling and later joint deformity. Many people with severe hemophilia can suffer from painful, debilitating joint bleeds and associated mobility issues that severely impede their quality of life.

HIV/AIDS
In the late 1970s-and 80s people with hemophilia were treated with blood products derived from thousands of donors. When the U.S. blood supply became contaminated by HIV, the products used as treatment for thousands of people with bleeding disorders also became contaminated. More than 50% of the hemophilia population became infected with HIV prior to 1985. The tremendous impact of HIV/AIDS on the hemophilia community is still with us. So many families have lost loved ones. This devastation has placed an emotional, health, ethical and financial burden on affected families and the entire community as well.
The tragedy of the HIV/AIDS crisis gave rise to heightened vigilance surrounding the safety of the nation's blood supply and blood products. HIV transmission by factor concentrates in the United States has not occurred since 1986 due to viral inactivation methods used in manufacturing blood products. While new screening methods and product processing procedures are now in place, continued improvements and steadfast oversight are needed to ensure that this tragedy is not repeated.

HEPATITIS
Hepatitis viruses were also transmitted in blood products used by persons with bleeding disorders. Today's blood products are much safer than those of the past. As of 1997, there have been no reports of hepatitis C transmission through clotting factor treated with newer processes.

There are six main hepatitis viruses, which cause problems ranging from mild chronic infections to liver failure. Almost 95% of all hepatitis cases are hepatitis A, B, or C. Some hepatitis viruses can be asymptomatic for many years and may never become chronic. Others can progress to liver cancers, end stage liver disease, and other life threatening conditions.

Symptoms may include fatigue, nausea, vomiting, joint aches, liver tenderness and enlargement, and weight loss. For more information about hepatitis, call HANDI for a copy of the publication "Understanding Hepatitis".
Transmission of hepatitis A remains a risk for people with bleeding disorders who use plasma-derived products. This is because hepatitis A virus can resist the viral inactivation methods used to manufacture plasma products. Hepatitis A is preventable. MASAC recommends all patients with bleeding disorders receive a hepatitis A and B vaccination. Currently, there is no vaccination for hepatitis C.

Future Therapies
Experimental methods are currently being investigated as possible breakthroughs for curing bleeding disorders.

Researchers are working on a method to insert better functioning factor VIII or factor IX genes into the cells of people with hemophilia so their blood will clot more effectively. It is hoped that gene therapy will lead to patients having fewer bleeding episodes. Gene therapy might eventually help people with hemophilia begin producing their own clotting factor, thereby removing or at least lessening their dependence on weekly infusions. With this advance, there exists the potential for someone born with severe hemophilia to eventually have significantly milder symptoms.

Some gene therapy research trials have been performed in humans with mixed results. The future for gene therapy in hemophilia is continuing albeit at a moderate pace. There are many projects continuing in animal models. Improved long-term expression of the new genes will require the development of better vectors (the means of delivering the new genes into the cells). For more information, call NHF's toll free information number (1-800-42-HANDI) for a packet of information about gene therapy for hemophilia.

Several new technologies are also being implemented to advance hemophilia treatment. These new technologies, once used to destroy viruses in blood, have been successful in virtually eliminating the risk of contracting HIV or hepatitis C from clotting factor today. Pharmaceutical companies are continuing to investigate genetically manufactured product alternatives derived from little to no human blood products. New products have consistently been developed which have an even higher purity than have ever been available before.

• Hematologists-specialists in blood disorders.
• Pediatricians-specialists in caring for infants, young children, and teenagers.
• Nurses-medical specialists in hemophilia care. The nurse is probably the person you will see most frequently.
• Social Workers-specialists who assist you with the issues of daily living, such as adjusting to hemophilia and locating resources (e.g., insurance, transportation, housing, etc.).
• Physical therapists-specialists in activity, exercise, and rehabilitation.
• Orthopedists-specialists in disorders of the bones and joints.
• Dentists-specialists in disorders of the teeth and gums. The dentists at HTCs are experts in treating children with oral bleeding problems.
• You are also an important member of the treatment team. The staff needs your input to develop a plan of care that will ensure your remain healthy, active, and able to live successfully with added challenge of hemophilia.

Medical and Scientific Advisory Council
NHF's prestigious Medical and Scientific Advisory Council (MASAC) was formed to issue recommendations and advisories on treatment, research and other general health concerns of the coagulation disorders community. Since its inception in 1954, MASAC has issued over 400 communications covering a wide range of medical issues, from prevention and treatment to advocacy of continued research initiatives. Each year, MASAC establishes standard treatment guidelines which are often referred to by international experts, medical schools, pharmacists, emergency room personnel, insurance companies and many others.

MASAC is composed of physicians, scientists and other medical professionals with a wide range of expertise including coagulation disorders, blood safety and infectious disease. Members of the community, as well as chairs of the nursing, social work, and physical therapy working groups also serve on MASAC. MASAC usually meets three times a year to issue recommendations which are then forwarded to the NHF Board of Directors for approval.

Financial and Insurance Issues
For individuals with bleeding disorders, and especially those with hemophilia, treatment can be a tremendously heavy financial burden. In fact, the treatment of hemophilia ranks among the most expensive chronic diseases in the United States. New technology has led to remarkable advances in improving the safety of new blood products, but these technologies have come at ever-increasing costs.

It is difficult to separate these cost increases from the overall cost increase in healthcare nationwide; however, research and development for many of these specialized products come with a huge price tag. Current factor concentrates are among the most costly therapies in the world, with a total annual cost per person ranging from $60,000 to $150,000. Complications such as major surgery, undergoing immune tolerance for an inhibitor, HIV/AIDS and/or hepatitis treatments, can increase these costs exponentially.

The state of insurance reimbursement today is constantly changing to meet this competitive environment. Patients and medical professionals alike are finding the system difficult to manage, complex and often confusing. While organizations and treatment professionals can educate people to better understand insurance, it ultimately falls on individuals to manage their own healthcare reimbursement.

As a result, it has become vitally important for consumers to be well-informed about finance, reimbursement and healthcare issues. Consumers should understand their insurance policies and ask specific questions about drug coverage, drug costs, lifetime caps and exclusionary riders. People should not wait until a time of crisis before learning the rules of their health insurance policy.

DISCLAIMER
The information contained on this site is provided for your general information only. The Cascade Foundation does not give medical advice or engage in the practice of medicine. In addition, the CFSA under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

This information is provided free of charge for home care companies, manufacturers and the Hemophilia Treatment Center and members of the Arizona bleeding disorder community.  It is intended to be used as a reference guide to educate and inform.  Additional information will be added as needed.

The Board of Directors of the Cascade Foundation hope that this information will provide assistance in your research for the best possible care.