When Your Child Has Addison Disease

Your child has been diagnosed with Addison disease. This happens when the adrenal glands don’t make enough of the hormone cortisol. They also don’t make enough of the hormone aldosterone in some cases. The disease is also called adrenal insufficiency or hypocortisolism. It can affect your child's ability to respond to stress and carry out essential life functions.Its causes include:

• Congenital adrenal hyperplasia, an inherited condition.

• Infections (HIV, syphilis, tuberculosis).

• Certain drugs, such as Mitotane, etomidate, high-dose ketoconazole, opioids, phenytoin, rifampicin.

• Bilateral adrenal hemorrhage.

• Genetic causes.

A complication of this disease is called an Addisonian crisis. It is a life-threatening condition. If left untreated, Addisonian crisis can result in death.

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 health care provider. Your child will need to take replacement hormones for the rest of their life. Cortisol is replaced by the drug hydrocortisone. If necessary, aldosterone is replaced by the drug fludrocortisone. Your provider will adjust the dose of each of these medicines based on your child's needs. 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. Inform your provider once your child recovers completely so that the dose can be readjusted.

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

• High doses of corticosteroids are linked with osteoporosis. It is a condition in which the bones become less dense and are more likely to break. Check with your provider to see if your child needs extra calcium and vitamin D.

• Consult a registered dietitian nutritionist to help determine how much sodium your child should have each day.

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 health care 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. Major causes include:

• Viral or bacterial infections.

• Physical stress, such as a surgical procedure or trauma.

• Forgetting a dose or suddenly stopping glucocorticoid therapy.

• Too much physical activity and dehydration.

• Emotional stress.

To prevent an Addisonian crisis:

• Make sure your child takes their medicine as directed. Do NOT skip doses or change the amount of medicines without checking with your child's provider.

• 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. Ask the child to wear a mask if needed.

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

• Teach your child to avoid touching surfaces or going barefoot in public places, such as lockers or pools, .

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

• While planning for a long trip, be sure to pack extra medicines and a spare steroid injection kit.

Telling your child’s health care providers

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

Follow-up care

Follow up with the 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 see whether more hormone supplements are needed (such as adrenal androgens in girls).

When to contact your child's doctor

Contact the provider right away if:

• Your child feels tired or weak.

• Your child has a loss of appetite or weight loss.

• Your child feels dizzy when standing up.

• Your child has muscle aches.

• Your child has nausea, vomiting, or diarrhea.

• Your child has sharp pain in the lower back, abdomen, or legs.

• Your child has any infection.

• Your child has a f fever of 100.4°F ( 38°C) or higher, or as advised by the provider.

• You see a darkening of your child's skin.