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Medically reviewed and verified by Kate Burke, MD, MHA
Affecting about 1 in every 10-15,000 children, classic congenital adrenal hyperplasia (CAH) is an endocrine disorder typically diagnosed at a very young age. With proper treatment, a child can grow up and live a normal life. There are physical side effects, but life expectancy with proper treatment is normal. Taking care of a child with CAH can be challenging! PatientsLikeMe is here to provide the right information and support so you can give the best care possible. Here are some tips to help you navigate this journey.
Click here to learn more about CAH.
Understanding CAH
CAH is a condition where the adrenal glands do not produce certain hormones correctly. These hormones are essential for managing stress, maintaining blood pressure, and regulating metabolism. Children with CAH need daily medication to replace these hormones.
Daily Life
Medication Management
Your child will need to take hormone medication every day. These medicines are usually given as pills or liquid, two to three times a day. It is important to follow your doctor’s instructions and ensure your child takes their medication on time.
Regular Check-Ups
Regular visits to a pediatric endocrinologist (a doctor who specializes in hormones) are important. The doctor will check your child’s growth and hormone levels to adjust their medication as needed.
Illness and Injuries
During times of illness, surgery, or injury, your child’s body will need more cortisol. You’ll need to give them extra medication during these times. If your child has a high fever, is vomiting, or has a severe injury, contact your doctor immediately for advice.
Emergency Preparedness
Keep an emergency injection of cortisol at home and make sure you, your child (when they’re old enough), and other caregivers know how to use it. This can be lifesaving if your child can’t take their medication by mouth. Ensure your child wears a medical alert bracelet or necklace. This is crucial in case of an emergency when you might not be there to explain their condition.
Acne? CAH Symptom. Gaining weight? Side effect. It can be tough to tell apart symptoms of congenital adrenal hyperplasia (CAH) and treatment side effects of steroids apart.
Watch now: Is it a symptom or a side effect?
Your body may feel out of whack when living with CAH. Too little cortisol can make you feel tired or unwell and high androgen levels can cause early puberty, premature growth, and more. Treating CAH with high-dose steroids can cause side effects like weight gain, diabetes, and bone density issues. See why it’s important to talk to your doctor about what you’re experiencing and your treatment plan.
Questions about CAH symptoms and/or side effects from high-dose steroids? Visit: WhatTheCAH to learn more.
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Emotional Support
As your child gets older, talk to them about their condition in an age-appropriate way. Help them understand why taking their medication is important and encourage them to ask questions.
Joining a support group for families with CAH can be very helpful! You can share experiences, get advice, and find emotional support from others who understand what you are going through. Consider a psychologist or counselor who can help your child cope with any emotional challenges related to their condition. This can also be beneficial for you as a caregiver.
Resources and Help
Your primary resource will be your child’s medical team, including the pediatric endocrinologist. Do not hesitate to ask questions and seek their advice whenever you are unsure about something.
There are many online resources and organizations dedicated to helping families with CAH. Websites like the CARES Foundation offer valuable information and support. Books, brochures, and websites about CAH can help you learn more about the condition and how to manage it. They can also be useful tools for explaining CAH to your child and other family members.
The Importance of Self-Care
Caring for a child with CAH can be demanding. Make sure to take time for yourself to rest and recharge. This will help you stay strong and be the best caregiver you can be. Don’t be afraid to ask friends, family, or community resources for help. Whether it is assistance with daily tasks or someone to talk to, getting support is important.
Caring for a child with CAH involves daily medication management, regular doctor visits, and being prepared for emergencies. It also requires emotional support and education for both you and your child. Remember, you are not alone—there are many resources and people ready to help you on this journey. With the right care and support, your child can lead a healthy, happy life.
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