If your child has hereditary angioedema (HAE), it’s important to work alongside your child’s doctor. This rare genetic disease can cause episodes of severe swelling of the skin, airway, and gastrointestinal tract. The attacks are unpredictable and fluctuate throughout a person’s life. If not treated, HAE attacks occur more often.
Read on for tips on how to develop a plan for preventing and managing your child’s HAE attacks.
Know all the symptoms
There are many different symptoms to be aware of as you track your child’s condition. The faster you recognize the symptoms, the faster your child can receive treatment.
Your child may not be good at communicating their symptoms, or they may try to hide symptoms because they don’t want to upset you. Teach your child the importance of telling you right away when something’s up. Look out for the following symptoms:
- swollen feet and hands
- severe abdominal pain
- throat swelling
- a non-itchy, red rash (roughly 25 percent of people with HAE experience this)
Recognize the triggers
After an attack, it’s useful to keep a record of what your child was doing before the attack, such as what they ate. Keep track of anything your child may have been stressing about too. Make sure to also take note of the severity of each attack and the specific symptoms your child experienced.
If you can learn which events set off your child’s HAE attacks, you can teach your child to avoid them. At the very least, it can help you and your child expect an attack and undergo short-term preventive treatment before it becomes a problem.
Common HAE triggers include:
- stress and anxiety
- dental appointments
- certain medications, like antibiotics
- certain foods, such as nuts, eggs, seafood, and milk
- physical activity, especially repetitive activities like typing on a keyboard
- illness or infections
- environmental factors, such as excessive sun exposure, insect bites, animal dander, and very cold weather
Have enough on-demand medication on hand
The U.S. Food and Drug Administration has approved six medications to treat HAE attacks, but only some can be used to treat both adolescents and adults.
If you’re trained in self-treating your child, your plan should include knowing where to keep your child’s medication and how to store it. The US Hereditary Angioedema Association (HAEA) Medical Advisory Board recommends you have two or more standard doses of medication on hand at all times. After an attack, make sure you refill the prescription right away.
Contact your insurance company well in advance to make sure the medication is covered. If you don’t have insurance or you’re unsure about your benefits, the HAEA’s health team can help.
Learn how to use the medication
Learning how to administer medication to your child at home is an important tool in your child’s treatment plan. It not only gives you more control over your child’s treatment, but also allows them to receive on-demand treatment faster. If you aren’t already treating your child at home, your doctor can give you more information about how to do so.
You should know what to do if an on-demand treatment fails or your child has an adverse reaction to the medication. Speak with your doctor about this.
Know when and how to get to the emergency room
Even if you’re trained to administer treatment to your child at home, you should still seek emergency medical care in these cases:
- The attack involves the airway.
- The treatment didn’t work as expected.
- The attack was unusual.
- The attack leads to throat swelling.
Have the nearest emergency room mapped out with the most direct route. As an extra step, have your child’s electronic medical records flagged so it’s clear to the hospital staff that your child has HAE.
Given that infections can trigger an HAE attack, you should make sure your child is up to date on their vaccinations to avoid getting sick, including getting the flu vaccine every year.
Both you and your child are going to have to learn how to manage stress to prevent attacks. If your home environment is stressful, your child can easily become stressed as well. Yoga, breathing, exercising, and meditation are some examples of how to calm anxiety. Keeping a routine, eating healthy food, and sticking to a regular sleep schedule can also help. A positive attitude makes it easier to feel more in control.
Develop a support network
Rather than hide your child’s illness, talk to your close friends, neighbors, and family about HAE and what they can do if your child has an attack.
Meet with staff from your child’s school
Take time before the school year starts to talk to everyone involved with your child’s care. This includes teachers, school nurses, lunch aides, coaches, and babysitters. Print out brochures for them to read about HAE or direct them to online sources.
Before school starts, prepare an information packet detailing everything they need to know to take care of your child in case of an HAE attack. You should have your doctor read over the packet to make sure nothing is missed.
The packet should include:
- attack triggers
- information on your child’s medications
- how and where your child should receive treatment
- what makes up an emergency (and when to call 911)
- how to recognize throat swelling (and that throat swelling always requires immediate medical treatment)
- your contact information
- who to call if you can’t be reached
- contact information for your child’s doctor
- directions to the nearest emergency medical facility
Talk with your doctor
You should feel free enough to speak with your doctor about your child’s treatment plan and any concerns you might have. Once your treatment plan is made, visit your doctor at least once a year to assess how things are going. If the plan isn’t working, let you doctor know and be honest.
Your child’s treatment plan is for more than just treating attacks. It’s also a way to avoid triggers and keep others informed about what to do if your child has an attack. Once your treatment plan is established, you should do the best you can to prevent an attack from happening. Of course, not all attacks can be prevented. But once the symptoms of an attack are recognized, having a treatment plan means that either you or your child’s caregiver will know exactly what to do.