CAH and taking care of yourself as a parent or caregiver

Congenital adrenal hyperplasia (CAH) is a group of disorders that disrupt hormone production in the adrenal glands. Symptoms and severity vary depending on the type of CAH. Mild forms of the condition cause few noticeable symptoms, may not be identified until a person reaches adulthood, and may only require minimal treatment.

The more severe forms of CAH are called “classic CAH.” Classic CAH interferes with the production of cortisol, a hormone the body needs to regulate stress response, metabolism, blood pressure, and immune function. People with classic CAH need to take medications to maintain cortisol levels and reduce the risk of adrenal crisis, a life-threatening complication that requires emergency medical treatment.

Additionally, most cases of classic CAH also disrupt the production of the hormone aldosterone, leading to “salt-wasting.” This means the body cannot retain salt and fluid. Salt-wasting can cause potentially life-threatening complications, including severe dehydration and electrolyte imbalances, extremely low blood pressure, and adrenal crisis.

In the United States and many other countries, newborns are screened for the most common form of classic CAH shortly after birth. Early identification allows treatment to begin as soon as possible. There is no cure for classic CAH, but the condition can be managed with medications.

Parents and caregivers of children with classic CAH will take on a range of responsibilities that can include educating themselves about the condition, coordinating care among several healthcare providers, and managing dosing schedules for multiple medications. They will also need to explain the condition, treatment requirements, and safety concerns to teachers, instructors, coaches, and anyone else who will be caring for their child.

All of this is layered onto other parenting responsibilities, family obligations, work, and managing a household. It can be a lot for a parent or caregiver to manage.

Taking care of yourself as a parent or caregiver

It’s natural to want to prioritize a child’s needs ahead of your own. However, your own physical, mental, and emotional health are also important priorities. Taking care of these needs will help you be a better parent or caregiver. Caring for yourself isn't separate from caring for a child.

With that in mind, here are a few strategies for taking care of yourself and managing stress:

• Keep up with your own healthcare, including checkups, dental appointments, and appointments with any providers that you need to see for a health condition or concern.
• Follow strategies for good sleep hygiene and talk to a healthcare provider if you are having difficulty sleeping, do not feel rested after sleep, or are experiencing daytime sleepiness.
• Stay active, even if it’s just making time for a casual walk or a short workout.
• Follow a balanced diet that includes a variety of healthy foods. Nutrition is also important for kids growing up while managing CAH.
• Prioritize mental health. Counseling, therapy, and support groups have helped many people find strategies for coping with difficult emotions and caregiver stress.
• Consider stress-reducing activities like meditation, breathing exercises, gentle stretching, or listening to relaxing music.
• Schedule time for yourself.
• Also schedule time to spend with others.
• Ask for help when you need it.

Keeping up with your healthcare, prioritizing sleep, asking for help, and the other strategies listed above are also healthy behaviors that you will be modeling to a child with CAH. Providing a positive example of these behaviors at a young age may benefit a child as they transition from pediatric management of CAH to managing the condition as an adult.

Recognize the signs of caregiver burnout

Caregiver burnout is described as a state of mental, emotional, and physical exhaustion. It occurs when the demands of caregiving become greater than a person’s capacity to meet those demands. The strategies above can help you avoid burnout.

It’s also important to recognize the signs and symptoms of burnout:

• Feeling emotionally, mentally, and/or physically exhausted
• Feeling irritable or impatient
• Difficulty concentrating, staying focused, or remembering information
• Lacking interest in activities that are typically enjoyable
• Difficulty falling asleep, staying asleep, or getting enough restful sleep
• Negative feelings toward loved ones and friends
• Difficulty keeping up with basic needs, like eating meals and personal hygiene
• Withdrawing from friends and family
• Using alcohol, other substances, or other unhealthy behaviors as coping mechanisms
• Headaches, stomachaches, or other unexplained aches and pains
• Anxiety, depression, feelings of hopelessness, and low self-esteem

If you find yourself experiencing caregiver burnout, talk to a healthcare provider. This can be your own primary care provider or your child’s healthcare team. Healthcare providers can connect you with social workers, counselors, or supportive services for families managing chronic health conditions.