If your child has hemophilia A, you’re bound to have concerns and considerations. Keeping things in perspective can be challenging.
Follow this guide to feel more at ease, and to find out how to help your child thrive in spite of their condition.
One of the best decisions you can make for your child is to be as informed as possible about hemophilia A. This includes learning how to recognize the signs and symptoms of a bleed, researching the various treatments, and being aware of the side effects of medications.
You should learn how to treat minor bruises, injuries, and bleeds and also when to seek medical treatment. Ask your doctor for some recommended reading about raising a child with hemophilia. If you don’t understand something, ask a professional.
Work with a hemophilia treatment center
The staff members at a hemophilia treatment center (HTC) are there to provide much more than medical treatment for your child. HTC social workers and psychologists can help your entire family navigate the highs and lows of a chronic illness.
You can find a local federally funded HTC using this web-based HTC directory from The Centers for Disease Control and Prevention (CDC). Don’t hesitate to talk to the members of the hemophilia team if you have questions or concerns at any point. They’re role is to support you, guide you through the challenges, and help make sure both you and your child maintain good physical and emotional health.
Get your child’s school on board
Like most children, your kid is going to spend a large portion of their time at school. You may feel anxious from not having complete control of your child’s illness while they’re at school or daycare. It’s essential to establish ongoing, open communication with your child’s school and caregivers so that you can deal with challenges or problems as soon as they arise.
Giving people reliable information about hemophilia A is the best way to prevent misunderstanding about your child’s disorder. It can also give you peace of mind to know that the school staff is always looking out for your child.
It’s a good idea to have a nurse from your HTC meet directly with the school staff and share information about your child’s condition. Hemophilia A is a rare disease, so staff may not have ever heard about it. When you meet with them, make sure to explain what to watch out for and what to expect, such as the following:
- the cause of hemophilia A
- symptoms and signs of a bleed
- when and how to properly administer treatment
- that a medication refrigerator or storage cabinet may be needed for storing factor VIII for infusion by a parent or the child in the event of a minor bleed
- which over-the-counter medications to avoid giving your child, such as aspirin or nonsteroidal anti-inflammatory drugs
- what procedures should be in place to deal with an emergency
- activities that your child can safely participate in
- activities your child should definitely avoid
- the potential for missing class due to bleeds and doctors’ appointments, and how your child will make up the work
- how to reach you or the HTC staff
Take advantage of government programs
Federal and state programs for hemophilia have been around for decades to advocate for support, supply funding for research, and to provide other services for people with hemophilia.
Each state also has its own form of assistance programs for people with bleeding disorders. Among other things, government programs may offer the following for your child:
- 24/7 physician hotlines
- literature about hemophilia
- distribution of helmets, knee pads, and elbow pads
- home-infusion training
- assistance with insurance issues
- help with out of pocket medical expenses
- home delivery programs for medications
- summer camps for children with special conditions
Use emergency medical identification
Emergency medical identification (EMI) is typically a small bracelet that your child wears on their ankle or wrist with information about their disorder, blood type, allergies, and medications. In the case of an emergency, medical staff can use an EMI to promptly give your child the treatment they need. An EMI could save your child’s life during an emergency.
Avoid being a helicopter parent
As much as you want to protect your child from the dangers inherent in the world, being overprotective can cause more problems in the long run. While you’d want to caution your child from participating in contact sports and high-risk activities, your child needs to be free to explore the world on their own.
On top of this, physical activity is extremely beneficial for people with hemophilia A. It helps strengthen muscles, protect the joints, and keeps your child at a healthy body weight. Participation in physical activities can help improve coordination, encourage social interactions, and reduce bleeds. It can also make your child feel good about themselves, which is important for their emotional well-being.
Let your kid express their feelings without interjecting your own opinions. Over time, allow them to make their own decisions and learn from their own mistakes and experiences. Your child will need to eventually become independent and responsible for themselves, and that includes managing hemophilia on their own.
It’s normal to occasionally have negative feelings about your child’s hemophilia, but you can’t let them control your life. Dealing with your child’s illness can cause depression and even trouble with your relationships. Staying positive can be a hard task, which is why it’s a good idea to have a means for recharging your batteries and reducing your stress. Here are some ideas:
- Exercise or join a gym.
- Practice yoga or meditation.
- Join a support group.
- Find a club (such as sports, book, or art clubs).
- Keep a journal.
- Create a blog.
- Maintain a daily routine.
- Take long walks.
Try to focus on the things you can control, not the things you can’t. Finally, make sure you’re getting enough sleep.