How treating HAE early can preserve your child’s long-term quality of life
Fact-checked by After your child’s hereditary angioedema (HAE) diagnosis, it’s important to efficiently work with their care team to develop an appropriate treatment plan. Treating HAE early in children doesn’t just help prevent and manage swelling — it also minimizes the physical, educational, social, and emotional consequences of HAE to allow your child the best possible quality of life.
Physical and emotional impact of unmanaged HAE
Uncontrolled HAE can have a wide range of physical and emotional consequences for children and parents. Without appropriate treatment, your child with HAE may experience frequent and unpredictable swelling attacks that affect the skin, abdomen, or airways. These attacks can be painful, cause gastrointestinal problems, disrupt sleep, and lead to breathing emergencies that require hospitalization.
Recurrent attacks might mean your child has to miss out on activities such as school and socializing with friends. They may feel embarrassed about swelling, frustrated or sad about not being able to participate activities, or fear and uncertainty about future attacks.
Your child’s uncontrolled HAE can also have an emotional toll on you and other family members, leading to stress, worry, and fear.
While unpredictable attacks can occur even with the best possible treatment and care, the right medications can help lower their frequency and minimize the long-term impact of pediatric HAE on your child and yourself.
How early treatment reduces attacks and severity
Treatment for HAE typically takes a two-pronged approach: prophylactic (preventive) therapies to reduce the frequency of attacks and on-demand therapies to control active swelling.
Prophylactic therapies work in different ways to control the biological processes that lead to swelling in HAE. Taken regularly, they help reduce how often attacks happen and how much they interfere with daily life. When started as early as possible after an HAE diagnosis, they may be able to minimize your child’s experience with painful or life-threatening swelling.
Even with the right preventive treatment, attacks can still happen, so it’s also important to have a plan for on-demand treatment. Administering on-demand medications as soon as you recognize an attack is starting can help stop it from progressing and becoming more serious.
Protecting school performance and social growth
Establishing an appropriate treatment plan early can make it easier for your child to participate in school and social activities.
HAE can cause your child to miss school and assignments. Discomfort related to their disease or worry about unpredictable attacks might also make it harder for them to concentrate at school. Together, these factors can interfere with their ability to learn and affect their future educational and career growth.
But with the right treatment, your child may have fewer attacks that cause them to miss school. It might also help ease your child’s feelings of uncertainty and make it easier for them to focus and participate in school activities without worrying about swelling attacks. Starting treatment early can help ensure they don’t fall behind or need to catch up because of their disease.
HAE can also interfere with your child’s ability to socialize with other children. In addition to missing social activities because of attacks, your child might feel fear, uncertainty, or embarrassment that makes them avoid social activities. Having a treatment plan in place early on can make them feel more comfortable in social situations, enabling them to bond better with their peers and form healthy relationships.
Helping your child build confidence
Early intervention in kids with HAE [kw] can help minimize the emotional toll of the disease and make them more confident participating in normal childhood activities. You can support them by doing the following:
- Help them understand their treatment plan, and that an HAE attack is something they can prepare for and manage safely.
- Talk to them about what the symptoms of an attack feel like, as well as what they should do and who they should tell if they think they’re having an attack.
- Encourage them to still participate in activities they enjoy, and talk about how they can do so safely.
- Help them practice how to talk about their HAE with their peers in a way that is comfortable for them.
Make sure all adults spending time with your child, including teachers and friends’ parents, have access to an action plan detailing how to respond to an HAE attack, as well as an emergency kit with their treatments and necessary supplies. Knowing there is a plan to protect them wherever they are can make your child feel more secure participating.
In some cases, it might also help to have your child talk with a mental healthcare professional. They can help them work through how they’re feeling and coping strategies for when life with HAE feels overwhelming.
Working with your pediatric care team
At the time of your child’s diagnosis, talk with their HAE care team about a plan for both on-demand and preventive treatment. Ask them to help you develop a written action plan for managing your child’s HAE attacks that can be given to any adult responsible for your child’s care. You can also discuss with them the best way to manage your child’s participation in school, sports, travel, or other activities.
Importantly, these discussions should be ongoing. Your child’s care needs may change over time, and their doctors may need to periodically adjust their treatment plan. By having proactive, honest conversations with your pediatric HAE care team, you can ensure your child has the best possible quality of life.
Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
