If your child has a bleeding disorder, it's important to know that treatment options have significantly improved over the past several decades. Thanks to these advances, people with bleeding disorders can now live long, healthy, active, and fulfilling lives.
Regardless of the type of treatment your child is receiving, following the treatment plan is crucial. Whether it's medication, regular check-ups, physical therapy, or a combination of treatments, sticking to the plan can help manage the condition and prevent complications.
This section of Staying on Treatment covers:
Your Role
Helping your child become independent and be able to care for themselves is important. The first step is for you to know your child’s diagnosis and its treatment thoroughly.
Not only must you understand your child’s disorder fully, but you must also educate your child and their other caregivers. Now that your child can communicate, you must be certain that they understand their condition and can explain it to someone, if necessary.
It is also important to know your child’s treatment plan, including:
- The type and severity of bleeding disorder
- The type of product used to treat the bleeding disorder
- How it is administered
- How much is administered (called the dosage)
- How often it is administered
To successfully manage your child’s blood or bleeding disorder, it’s critical to recognize your responsibility to be your child’s health advocate. Your Hemophilia Treatment Center (HTC) team and health care providers will discuss their expert opinions about treatment for your child with you. However, you are responsible for the final decisions about your child’s health needs and following their treatment plan. While you are at your HTC, ask questions about your child’s treatment. Make sure that you understand how often and when to treat before you leave your child’s appointment.
Getting Your Child Involved
A parent or caregiver’s goal is to raise a child who is independent, healthy, well-adjusted, and happy. While it may take a bit more work, a child with a bleeding disorder can be all those things. It is never too early to begin to think of little ways to involve your child in their own care. Learning the basics early will help your child be ready to take on full management of their care in late adolescence.
Ways to include your child in their care:
- Educational events through your Hemophilia Treatment Center (HTC) or local bleeding disorder organization
- Have age-appropriate discussions about your child’s bleeding disorder and treatment plan
- Increasing your child’s responsibility as they age
- Age-appropriate discussions with the medical team
If you want more information about Hemophilia Treatment Centers, please go to Hemophilia Treatment Centers.
Impacts of Delaying Treatment
Treating bleeds early is very important, but what happens if you delay your child’s treatment? There are many ways your child’s body and health can be impacted by delaying treatment when they have a bleed:
Many people with bleeding experience joint bleeds throughout their lives. When a bleed occurs in the joints (called hemarthrosis), it can cause damage that can have long-term impacts, including:
Cartilage Damage: Joints are lined with a strong, flexible connective tissue called cartilage. Cartilage helps your child’s joints to absorb shock and decrease friction. Frequent bleeds can break down the cartilage. This can cause increased friction between the bones. Increased friction can cause pain, impact mobility, and ultimately will lead to damage and deformity of the bones.
Arthropathy: Repetitive bleeding episodes into the joints will lead to damage (called hemarthropathy). This can even happen in young people with bleeding disorders. Hemarthropathy may affect your child’s physical and emotional health. It can cause pain, deformity, and loss of function.
Permanent damage to your child's joints can prevent them from doing what they want and need to do. Your child may not be able to walk without pain. In some cases, they may need to use assistive devices, such as crutches or a wheelchair. Limited mobility can make your child's day-to-day activities difficult. This can include attending school, riding a bike, playing sports, and doing activities with their friends and family.
If you want more information about joint protection, please go to Joint Protection.
Acute pain is short-term pain. People with bleeding disorders usually experience acute pain when they have bleeding into a joint or muscle. Pain becomes chronic when it lasts longer than 3 months and impacts a person’s daily life. Damage to the joints caused by repetitive joint bleeds can result in chronic pain, even in a child. It’s important to manage pain early to prevent chronic effects.
Chronic pain, limited mobility, and an impaired lifestyle can increase a person’s susceptibility to mental health and emotional problems, including anxiety and depression. If you want more information about mental health issues and how to manage these, please go to Emotional Health.
Without prompt treatment, extra blood can pool in the joint or soft tissue and cause pain and swelling that takes longer to go away. The longer it takes for a bleed to heal, the longer it will be before your child can get back to their routine and the activities they enjoy.
With prompt treatment, a bleed can likely be managed without a trip to the emergency room or your child’s HTC. However, if treatment is delayed and the bleed becomes more serious, your child may need to see a health care provider. This can result in extra medical bills for you and can cause you to take time away from other important things like work to care for your child.
Joint damage, pain, and longer recovery periods can disrupt your child’s life. It can cause stress and fatigue. It can keep your child from having fun with family and friends, learning in school, participating in sports or activities they enjoy, and getting a good night’s sleep. It can have an emotional, financial, academic, and spiritual impact on everyone involved and can lead to feelings of helplessness and hopelessness.
Causes of Poor Adherence
Most people with bleeding disorders lead busy, active lives. This can make following a treatment plan difficult. If your child has a mild bleeding disorder, they may find treatment even more challenging. In fact, parents or caregivers of children with mild hemophilia have been found to be significantly less likely to treat a bleeding episode.
Lack of adherence is a common pattern seen in people with chronic medical conditions that don’t always have a visible impact on daily health (such as high blood pressure, high cholesterol, or depression).
The most common reasons for poor adherence to treatment in individuals with bleeding disorders are:
- A decrease, change, or disappearance of symptoms
- Forgetting treatment
- Lack of time for treatment
- Inconvenience of treatment
- Lack of understanding of the long-term impact of delaying treatment on your child’s health
Improving Adherence
Regardless of the severity or type of bleeding disorder your child has, you should remember that decisions you make today can have a big impact on how your child’s bleeding disorder affects them in the future. This is true regardless of their age or current health. Preventing bleeds and treating bleeds quickly and correctly is critical to protecting your child’s health.
If you find that it’s difficult to adhere to your child’s treatment plan for any reason, talk with your child’s health care provider or HTC team as soon as possible. Together, you will create a treatment plan that will work for you and your child.
- Recognizing signs and symptoms of bleeds.
- Understanding your child’s treatment protocol.
- Changing the frequency of treatment.
- Changing the time of day that your child receives treatment.
- Keeping a treatment log.
- Identifying ways to remind yourself when it’s time for your child’s treatment.
- Keeping enough medication and supplies available for treatment.
When you adhere to your child’s treatment plan, you’re making an important choice. You’re choosing to take charge of your child’s bleeding disorder so that you can protect their health over the long term.
If you want more information about talking to your child’s health care provider, please go to Talking to Your Health Care Provider.