Estimated reading time: 4 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
When your child is diagnosed with Congenital Adrenal Hyperplasia (CAH), it can feel overwhelming. With the right treatment and care, your child can lead a happy and normal life. The first step? Being informed about the condition and what you can do. Here is what you need to know about managing CAH.
Understanding CAH
CAH is a condition that affects the adrenal glands, which sit on top of the kidneys. These glands produce important hormones that help control many functions in the body. People with CAH have a hormone imbalance and need medication to help their bodies work correctly. An imbalance in hormone levels can lead to a number of changes and problems over time. Working closely with your doctor is crucial for managing the challenges of lowering the high levels of androgen without causing side effects from the required high doses of glucosteroid medications.
There are three primary hormones that CAH affects: cortisol, aldosterone, and androgen. Depending on the hormone affected, your child may experience different symptoms!
Treating CAH
CAH is a condition that needs lifelong treatment. This means your child will need to take hormone medications every day. The amount of medication will change as your child grows, so regular check-ups with a doctor are important. The primary goal of treating CAH with medications is to lower the amount of androgens the body makes and replace the hormones the body is missing.
Glucocorticoids are taken to replace cortisol. This helps control the body’s use of fats, proteins, and carbohydrates. It also helps manage stress and reduces inflammation. Mineralocorticoids are used to replace aldosterone. This helps keep salt in the body and get rid of extra potassium. Some children also need a medication called fludrocortisone, which helps control salt levels in the body. Infants might need extra salt in their formula.
Congenital adrenal hyperplasia (CAH) is a rare, lifelong genetic condition involving the adrenal glands.
Watch now: Understanding CAH: A guide to the basics
CAH affects three important hormones that help the body function: cortisol, aldosterone, and androgens. Cortisol manages the body's stress response, while aldosterone helps balance sodium and water levels, both of which also help regulate blood pressure. Androgens on the other hand impact growth, puberty, and reproduction.
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Special Situations
During times of illness, surgery, or injury, your child’s body needs more cortisol. In these situations, they will need extra medication. If your child has a high fever, is vomiting, or has a severe injury, it is crucial to give them an extra dose of their medication. In emergencies, when your child can't take their medication by mouth, a quick-acting cortisol injection may be necessary. Always keep this medication handy and make sure anyone caring for your child knows how to use it.
Children with CAH should wear a medical alert bracelet or necklace. This is important for emergency situations when you might not be there to explain their condition.
Living a Normal Life
With regular medication and check-ups, children with CAH can do all the things other children do! They can play, go to school, and make friends just like anyone else. As one ages, if a medication regimen is adhered to, women have no difficulties getting pregnant and men have normal fertility.
As your child grows, it’s important to explain their condition in a way they can understand. For young children, you can say something like, "Your body needs this medicine because it can’t make it on its own." As they get older, they need to understand the importance of taking their medication regularly. It can be helpful to connect with other families who have children with CAH. Support groups and online communities can provide advice, share experiences, and offer emotional support.
Living with CAH involves some extra steps, but with the right care, your child can lead a normal, active life. Regular medication, check-ups, and support from family and healthcare providers will help your child thrive. Remember, you are not alone on this journey—there are many resources and people ready to support you and your child every step of the way.
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