Estimated reading time: 4 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
If your child has been diagnosed with Congenital Adrenal Hyperplasia (CAH), you might feel overwhelmed and unsure about what treatments are available. Let's break it down simply to help you understand the options and what they mean for your child.
CAH is a condition where the adrenal glands don't produce certain hormones properly. There are two types: classic and nonclassic. Treatment for CAH depends on which type your child has.
Medication for CAH
Classic CAH
For newborns with classic CAH, starting treatment quickly is important. This type of CAH is treated with steroids that replace the missing hormones. Infants and children usually take a form of cortisol called hydrocortisone. Adults may take hydrocortisone, prednisone, or dexamethasone. Another medication, fludrocortisone, helps replace a hormone called aldosterone, which helps balance salt in the body. Sometimes, eating salty foods or taking salt pills can help manage salt levels. Medication must be taken daily for life. Stopping medication can cause symptoms to return.
The body needs more cortisol during physical stress, like illness, surgery, or injury. During these times, your child might need a higher dose of their medication. Children and adults with classic CAH should wear a medical alert bracelet or necklace. This alerts medical professionals to give the right treatment in an emergency. Regular check-ups are crucial because the dosage will need adjustments. Too much medication can cause symptoms like weight gain, slowed growth, or high blood pressure. If you notice any of these symptoms, talk to your doctor immediately. Working closely with your doctor is crucial for managing the challenges of lowering the high levels of androgen without causing side effects from the require high doses of glucocorticoid medications.
Nonclassic CAH
For nonclassic CAH, treatment depends on whether symptoms are present. Not everyone with nonclassic CAH needs medication. Treatment depends on the severity of symptoms. If symptoms like early puberty, excess body hair, irregular periods (for girls), or infertility occur, low doses of the same medications used for classic CAH are given. Some people with nonclassic CAH may stop taking medication as adults if symptoms improve.
The hypothalamic-pituitary-adrenal axis? Low cortisol? High androgens? What does it all mean?
Watch now: The science behind CAH: What’s going on in my body?
Congenital adrenal hyperplasia (CAH) can be overwhelming, but breaking it down can make it easier to understand what's happening in your body. Hormones monitored by your doctor are produced by several different organs that make up the HPA axis. The HPA axis is short for hypothalamic-pituitary-adrenal axis and in people with CAH, those organs don’t work together as they should. Learn more about the HPA axis and its role in this video.
Questions about CAH and how it affects the body? Visit WhatTheCAH to learn more. Sponsored by Neurocrine Biosciences, Inc.
Surgery
Classic CAH
Girls with classic CAH might have ambiguous genitalia, which can sometimes affect urine flow. Surgery might be needed to correct the ambiguous genetalia. Surgery should be performed by an experienced surgeon who specializes in this condition. Deciding when to have surgery can be tough. Some parents opt for surgery during infancy, while others wait until later. This decision should be made with the help of healthcare providers. Boys with classic CAH do not typically require surgery for genital abnormalities.
Nonclassic CAH
Girls with nonclassic CAH have typical genitalia and usually do not need surgery.
Support for Mental Health
Dealing with CAH can be challenging for both children and parents. It is important to get support! A psychologist or social worker can help your family navigate the emotional aspects of CAH. They can also support your decision-making process regarding treatments like surgery.
It is not uncommon for children affected by CAH to need mental health support. It has been shown that there is an increased risk of psychiatric disorders and substance use disorders in people diagnosed with the condition. Staying on top of long-term mental health and getting the right support can make all the difference.
Managing CAH involves a combination of medications, possible surgery, and emotional support. Work with your healthcare team to ensure your child is receiving the best possible care. With the right treatment, they can live a full and healthy life!
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