US Hereditary Angioedema Association

HAE and Children
The gene defect that causes HAE is hereditary. Children of parents with HAE have a 50/50 chance of inheriting the disease if one parent has HAE. A person cannot be a "carrier" of the HAE gene. HAE does not skip generations, which means that the children of non-patients will not inherit the disease. For the most reliable test result, children should be at least one year old for C1 inhibitor testing.

It is important to note that 25% of HAE patients do NOT have a family history of the disease. This means that the gene became spontaneously defective during conception. These HAE patients can pass on HAE to their children.

	At What Age Should I Have My Child Tested? HAE physician experts recommend waiting until a child is at least 1 year old before testing C1 Inhibitor levels.
	At What Age Do Attacks Of Hereditary Angioedema Start? The age of HAE onset varies considerably, however, in one study, half of the patients reported onset of their symptoms by the age of seven, and over two thirds became symptomatic by the age of thirteen. There also seems to be an increased frequency of attacks during puberty or adolescence.
	What Treatments Are Available For Children Who Have Hereditary Angioedema? One of the available HAE therapies may be an appropriate choice for use with children. Parents should work with their child's HAE physician expert to create an individualized treatment plan for each child. Read more about treatments for children
	School Resources Missing school, what are 504 plans, and dealing with the school nurse. Read more about school resources

	Advocate Parents play an important part and should take an active role as caregivers. Don't walk into your child's physician's office with a stack of pages printed off the Internet, but be ready to speak knowledgeably. Information on the various types of angioedema, disease symptoms, triggers, and current treatments, are available on this web site. Visit all of the web site pages to be sure you are well-versed in HAE facts.
	Create a Plan It is important for parents or legal guardians to work with their child's physician to create an individualized HAE treatment plan. There are treatments approved by the FDA for children as young as 2 years old – these and any other options should be discussed in-depth with your child's physician.
	Educate Take time to speak with everyone involved in your child's care – teachers, gym teachers, school nurses, sports coaches, field trip chaperones, and baby-sitters. Direct them to this web site or print out information about HAE for them to read on their own: "What is HAE?" brochure Read more here: "Study and Work Life"
	Set Up An Emergency Plan It's imperative that everyone involved in your child's care knows your plan for an HAE emergency, if you are not there. Prepare and provide a concise informational packet with everything needed to take care of your child in an HAE emergency, including information on your child's current therapy, your wishes for how and where your child should receive treatment, and your best contact information. If you're traveling with your child, make sure you know where the nearest emergency medical facility is located – your HAEA Patient Services Team Member can help you with this.
	Cheer We live in a time when HAE treatment is available to help your child lead a normal and healthy life. Cheer them on – encourage them! With a uniquely tailored HAE treatment plan, kids can participate in sports, extracurricular activities, head off to college – enjoy life to the fullest!