No one likes to feel stressed, but for newborns and children living with the classic type of congenital adrenal hyperplasia (CAH), it can lead to a dangerous condition called an adrenal crisis. That’s why your child’s endocrine specialist may emphasize the importance of helping them stay calm and handle stress in healthy ways.

Since parents of children with CAH want to avoid an adrenal crisis, helping your child cope with stress is essential — not just now, but as they grow and learn to do it themselves. Here’s what you need to know to help your child thrive.

How Does Stress Impact Children With CAH?

Cortisol is an important hormone in the body. It helps you manage physical responses to illnesses and other stressors. Because people with CAH don’t make enough cortisol, their bodies may not be able to handle stress the same way that people without CAH do.

If left untreated, an adrenal crisis can be life-threatening. Without enough cortisol, a child may vomit, have severe diarrhea, become dehydrated, feel confused, or have seizures. In this state, a dangerous drop in blood pressure can lead to shock, which may result in coma or even death if not treated quickly.

Stress Dosing and CAH

Your pediatric endocrinologist, especially one experienced in CAH, will tell you how much hydrocortisone and other hormones, like aldosterone, to give your child as a daily medication. They may tell you to give your child extra hydrocortisone when their body is under a lot of physical stress. This might include when they have a fever, break a bone, get a concussion, need surgery, or have an illness that causes vomiting and diarrhea. This is called a “stress dose” because it’s only given when the body is under more stress than usual.

Stress doses are common among people living with CAH. It’s important to make sure you understand when your endocrinology team wants you to give your child a stress dose, how much to give, and how to administer the medication. That way, your child will have the cortisol they need to get through illnesses and injuries without an adrenal crisis.

Signs of Stress in Children With CAH

Children with CAH are likely to show many of the same signs of stress as others. However, physical stress — like injuries or illness — can be especially challenging for them. Their bodies may not respond the same way as other children’s, making recovery more difficult.

Children experiencing stress might:

• Get sick more often
• Have trouble sleeping
• Get angry or seem irritable without a good explanation
• Ignore their usual tasks or stop taking care of their responsibilities
• Start eating a lot more or a lot less than usual
• Change their normal patterns of behavior, like suddenly not wanting to leave the house or not following directions they used to follow easily

If you notice any of these signs, and particularly if you notice several of them at once, your child may be experiencing too much stress. That’s when you want to notify your endocrinology team of these changes because they may want to evaluate if the current dose of steroids needs to be changed or if stress dosing is required. You can also use some of the stress management techniques below.

How To Manage Stress in Children With CAH

There are many ways to help your child manage stress. Creating a consistent routine, encouraging relaxation techniques, and providing emotional support can all make a difference. Finding activities they enjoy, like reading, drawing, or playing outside, may also help keep their stress levels low.

Exercise and Outdoor Play

Encouraging your child to get at least 60 minutes of activity each day can help reduce stress. Outdoor activities like playing in the yard, walking a pet, hiking, swimming, or practicing a sport provide both exercise and a natural stress reliever.

Find activities your child enjoys, whether it’s dance, biking, or simply running around outside. Spending time in nature and staying active can boost their mood, improve sleep, and build healthy habits for life.

Get Enough Sleep

It’s always important to get enough sleep, especially because sleep helps manage stress levels. Children between 6 and 12 years old should sleep for 9 to 12 hours each night, while teens should get 8 to 10 hours. You may need to help your child limit the amount of screen time they have before bed and keep any devices they can access out of their bedrooms. You can also use music or white noise to help your child sleep.

Try Journaling

If your child is old enough to write, try teaching them to journal. Writing can help children express their feelings and feel less stressed. They can use a pen and paper or even a computer if they prefer to type. Your child can write about everything from how their day went to how they feel about living with CAH. Writing about positive experiences, like what they’re grateful for, will help them feel less stressed.

Use Muscle Relaxation

Tensing and releasing the muscles can help a child focus only on that, which can help lower their stress levels. You can talk your child through it, so all they have to do is squeeze and release the muscles in their body. You can start at the top or the bottom of the body and work your way to the other end. Tell them when to squeeze and when to release so they don’t have to think about it.

Take Care of Yourself, Too

Caring for a child with CAH can be overwhelming, and your well-being matters, too. When you’re emotionally and physically well, you’ll have more energy to support your child.

Try these self-care strategies:

• Use stress management techniques — Practicing relaxation, exercise, or journaling can help you stay balanced.
• Seek support — Joining a CAH parent support group or asking for help with child care can lighten your load.
• Model healthy coping — Children learn from watching you. Managing your stress shows them how to handle theirs.

By prioritizing your well-being, you set the foundation for a healthier, more resilient family.

Having a child or young adult with a significant diagnosis like CAH can be stressful, too. In addition, managing the stress level of another person can take its toll. Overall, being a caregiver can be hard.

Talk With Others Who Understand

On CAHteam, the site for those with congenital adrenal hyperplasia and their loved ones, people come together to gain a new understanding of CAH and share their stories with others who understand life with the condition.

Do you expend a lot of effort managing your child’s stress because of CAH? What has worked best for you? Share your insights in the comments below.