When Your Child Has Addison Disease

Your child has been diagnosed with Addison disease. This occurs when the adrenal glands don’t make enough of the hormone cortisol. The adrenal glands also don’t make enough of the hormone aldosterone in some cases. The disease is also called adrenal insufficiency or hypocortisolism. A complication of this disease is called an Addisonian crisis. Here's what you need to know about caring for your child.

Medicine instructions

• Make sure your child takes all medicines for this disease exactly as directed by the healthcare provider. Your child will need to take replacement hormones for the rest of their life. The doses will likely increase as the child grows.

• Carry a steroid injection kit for emergencies as directed. Your child will need an emergency steroid (hydrocortisone) shot whenever they are vomiting, unable to drink, or have a serious accident.

• The steroid dose needs to be doubled or tripled if your child is injured or becomes seriously ill. Ask the provider about when and why your child would need a double or triple dose of steroid. Make sure the provider gives you clear written instructions on how to give your child the extra hydrocortisone for stress.

• Get your child a medical ID bracelet that says, “Addison disease: needs steroid medicine daily.” Make sure your child wears the bracelet at all times. Think about putting the tag on a sturdier chain than the one it came with. You can also try putting the tag on a necklace, anklet, or even use it as a belt charm if it will help your child to always wear it.

• Tell the healthcare provider that your child has Addison disease before they have any type of procedure. Your child’s steroid dose may need to be increased.

Preventing dehydration

It's very important for your child to not get dehydrated. To do this:

• Increase how much salt your child has if the healthcare provider advises you to. Examples of salty foods are canned soups and potato chips. Use table salt where needed.

• Treat minor flare-ups by making sure your child drinks more fluids and eats more salty foods. The replacement doses of cortisol and the aldosterone (mineralocorticoid) may need to be higher during the warmer months when your child is sweating more.

Preventing Addisonian crisis

Addisonian crisis is also known as adrenal crisis. It can occur if your child doesn’t have enough steroid hormone during stress or is dehydrated. To prevent an Addisonian crisis:

• Make sure your child takes their medicine as directed.

• Make sure your child drinks enough fluids. Don’t let your child get dehydrated.

• Keep your child away from large crowds during cold and flu season.

• Teach your child good hygiene, such as correct handwashing.

• Keep your child’s vaccines up to date. Get your child the flu shot (vaccine) every year.

Telling your child’s healthcare providers

Tell all of your child’s healthcare providers that they have Addison disease. This includes dentists, surgeons, and any specialists.

Follow-up care

Follow up with the healthcare provider as directed. Keep regular follow-up appointments with the provider or hormone specialist (pediatric endocrinologist). The endocrinologist will be checking that your child continues to grow normally. They will also check whether additional hormone supplements are needed (such as adrenal androgens in girls).

When to call your child's healthcare provider 

Call the healthcare provider right away if your child has any of these:

• Tiredness or weakness

• Loss of appetite or weight loss

• Dizziness when standing up

• Muscle aches

• Nausea, vomiting, or diarrhea

• Sharp pain in the lower back, abdomen, or legs

• Any infection

• A fever of 100.4°F ( 38°C) or higher, or as advised by the provider

• Darkening of the skin