Providing information and inspiration to the hemophilia community.
Q&A: TEACHING YOUR SON TO SELF-INFUSE
Self-infusing works around your needs and your schedule.
Q: How old is your son?
A: Kevin is now 19.
Q: When did you teach him to self-infuse?
A: When he was in 6th grade, he and his brother both decided they were ready to start infusing themselves. The Home Health nurse is the one who taught Kevin—at his request! One visit and that was it.
Q: So Kevin did not learn to infuse at camp?
A: No, but helping to teach other kids to infuse at camp is a source of great happiness since he could relate to the younger kids.
Q: Do you think there's any right or best time to teach self-infusion?
A: Every child is unique with different family dynamics and support systems.
Q: What did you most hope to accomplish in teaching your son to self-infuse?
A: To try and help him become independent—kids have to learn it's their condition and they are ultimately responsible. A parent's role is to help the child get ready. We don't want to keep them dependent.
Q: Do you believe kids who have hemophilia want to keep up with their friends/peers who self-infuse?
A: At home or at school, not really; because there are so few kids who have hemophilia that they might come into contact with. But at camp, yes, that's another story—there is "good" pressure to learn to infuse.
Q: Is there any other benefit to encouraging or teaching your child to self-infuse?
A: Absolutely. Because Kevin self-infuses on demand, he would infuse at the right time rather than wait for someone else to do it—infusing sooner than later. Infusing when they need to can give them freedom to do the things they want to do and not interfere as much with their active lifestyle.
Learn more at BeneFIX.com.
What Is BeneFIX?
BeneFIX® Coagulation Factor IX (Recombinant) is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.
BeneFIX is NOT used to treat hemophilia A.
Important Safety Information for BeneFIX
- BeneFIX is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein.
- Call your health care provider right away if your bleeding is not controlled after using BeneFIX.
- Allergic reactions may occur with BeneFIX. Call your health care provider or get emergency treatment right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat, facial swelling, faintness, rash or hives.
- Your body can make antibodies, called “inhibitors,” which may interfere with the effectiveness of BeneFIX.
- If you have risk factors for developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion, BeneFIX may increase the risk of abnormal blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been established.
- Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash.
Please see full Prescribing Information for BeneFIX.
What Is XYNTHA?
Xyntha® Antihemophilic Factor (Recombinant), Plasma/Albumin-Free is indicated for the control and prevention of bleeding episodes in patients with hemophilia A (congenital factor VIII deficiency or classic hemophilia) and for surgical prophylaxis in patients with hemophilia A.
XYNTHA does not contain von Willebrand factor and, therefore, is not indicated in von Willebrand's disease.
Important Safety Information for XYNTHA
- Allergic reactions are possible with XYNTHA. Signs of an allergic reaction may include hives, rash with itching, chest tightness, difficulty breathing, faintness, or fast heartbeat. XYNTHA contains trace amounts of hamster protein. You may develop an allergic reaction to these proteins. Tell your doctor if you have had an allergic reaction to hamster protein.
- Call your doctor right away if bleeding is not controlled after using your factor VIII replacement therapy; this may be a sign of an inhibitor. Inhibitors have been observed in patients receiving factor VIII products, including XYNTHA.
- The most common adverse reaction in study 1 (safety and efficacy study) is headache (24% of subjects) and in study 2 (surgery study) is fever (41% of subjects). Other common side effects of XYNTHA include nausea, vomiting, diarrhea, or weakness.
- XYNTHA is an injectable medicine administered by intravenous (IV) infusion. Local irritation may occur when infusing XYNTHA after reconstitution in XYNTHA Solofuse.
Please see full Prescribing Information for XYNTHA.
RUS277708-01
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Camp changes kids' lives. The counselor stories describe it and the research confirms it. But there is a way that your child looks when they get home that lets you know that this has been a very powerful experience for them. They stand a little taller with a twinkle in their eye and share great adventures where they excelled and made friends. And none of this is by accident.
The camp environment is created very intentionally to help kids and teens feel capable, supported, and recognize their amazing potential. It's focused on relationship building and making healthy decisions.
One of the goals of most bleeding disorder camps is to help turn the camper's health care responsibility over to them and foster independence. These lessons become even more important when teenagers begin to struggle with the challenges of following their treatment plans while the rest of adolescence is weighing down on their shoulders. As a parent, you can help bring some of camp's most important lessons back home and support these transitional challenges.
- Camp encourages discovery. Make sure your kids understand their disorder. Encourage them to ask questions and develop a relationship with their treatment team from an early age. Make learning about their disorder fun, interesting, a puzzle to solve, and a uniqueness to appreciate.
- Camp encourages building supportive relationships. Work from an early age to develop a trusting and collaborative relationship with your child around their treatment. Challenge your child from an early age to take responsibility for as many parts of their treatment as possible. Share with them often the strengths you see in them that will allow them to overcome the challenges of managing their disorder. Encourage your child to develop friendships where they can be open about their disorder and supported in making healthy choices.
- Camp encourages learning from mistakes and perseverance. They will make mistakes as they try new things. Let them know that you'll support them no matter how their attempts turn out. When they do make a mistake, remember not to step in and save the day, but let them work through their challenges.
The structure of camp sets your child up for success. Help maintain the enthusiasm, that special camp twinkle, by continuing to build sustainable systems to support your child as they develop into confident and healthy adults.
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