Estimated reading time: 6 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Sending your child to school is a significant milestone for any parent. When your child has congenital adrenal hyperplasia (CAH), there are extra steps you need to take to ensure their safety and well-being during the school day. CAH affects hormone production and can lead to health complications if not properly managed. While it may seem overwhelming at first, with preparation, communication, and teamwork, you can support your child’s success at school! Here, PatientsLikeMe will walk you through how to get ready for the school day, steps for involving the school staff, and how to help your child understand their condition.
Getting Ready for School
The first thing to stay on top of is medication. Your child’s medication is critical in managing their CAH. Depending on their treatment plan, they may need medicine at specific times during the day. Work with the school nurse or designated staff to set up doses during times that won't interrupt your child’s learning, like during recess or breaks. Talk with their doctor to get a detailed prescription note that includes dosage, timing, and both instructions and contact information for emergencies. Make sure the school has this information on file. It is also important to prepare for emergencies! Pack a medical kit with your child’s daily medication, an emergency Solu-Cortef injection kit, and instructions for when and how to use it. This should be kept in a safe but accessible place at the school, like the nurse’s office.
Children with CAH are at risk of dehydration, especially during physical activity. Talk to the school about allowing your child to carry a water bottle throughout the day if possible, as well as any other liquids or foods that they may need. Your child may have restrictions related to heat and physical activity, which you should be sure to clarify with their doctor. This will make sure they have access to water during class and on the playground. Dress your child in weather-appropriate clothing, as extreme temperatures can also impact their condition. Also, provide snacks if needed and inform the school if there are any dietary restrictions related to their treatment.
You might want to set up a 504 plan. A 504 plan makes sure your child has access to medication or special bathroom breaks to prevent any barriers to their education. Finally, clarify emergency plans with the school. They should know when and how to administer the Solu-Cortef injection in case of an adrenal crisis. Some schools might require an RN to give injections during emergencies, so clear up what resources are available.
Communication is Key
Make sure you meet with the school nurse or the person responsible for administering medication. Explain the seriousness of CAH and make sure they understand when doses needs to be given and how to recognize signs of an adrenal crisis. You can also meet with the principal and teachers to fill them in on your child’s condition. This builds a safety net in case the nurse isn’t available during an emergency. Talk about your child’s health plan and make sure the teacher knows (and keeps confidential):
- How to spot symptoms of illness, such as fatigue or dizziness.
- What to do if your child has a fall or shows signs of stress (as stress can trigger symptoms).
- That your child may need extra water breaks or bathroom trips, and/or other unique needs.
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.
Want to Learn More? Visit WhatTheCAH. Sponsored by Neurocrine Biosciences, Inc.
Empowering Your Child
As your child gets older, they’ll need to take more responsibility for managing their condition. Help them understand when and why they need to take their medication, the impact if they do not take it, and how to ask for it. You can set up a simple chart or checklist they can follow during the school day. Explain the symptoms of an adrenal crisis and other issues related to CAH. Teach them to tell an adult immediately if they feel dizzy, overly tired, or if they fall and get hurt.
Encourage your child to drink water regularly and remind them that it’s okay to ask for a bathroom or water break if they need one. They should feel comfortable speaking up about their needs. Teach your child to recognize when they might be heading towards an emergency and make sure they know who to go to for help. They should always have a medical alert bracelet or necklace to wear, which will help in case of an emergency when your child cannot communicate.
Staying Organized
Keep copies of their health plan, medical notes, and emergency procedures. Share these with the school and make sure they are up to date. Always follow up in writing after any meetings with school staff to make sure everyone is on the same page. You are not alone in this! Stay in touch with teachers, the school nurse, and other key personnel. Regular communication helps ensure that your child with CAH is safe and thriving at school. Ask your child how they’re feeling after school each day and encourage them to share any concerns. Communication can be tough at times between parents and children, but fostering a sense of support and honesty can go a long way.
Managing your child’s CAH at school is a team effort. It might take a little time to get everything in place, but with careful preparation and open communication, your child can enjoy their school experience and be safe. Parents of children with CAH are strong advocates, and you can take comfort in knowing that you are ensuring your child gets the care they need at school. With these steps, you’ll feel more confident as you send your child off to school, knowing they are in good hands! For more information on CAH, and to connect with others in the same boat, join PLM today!