Congenital Adrenal Hyperplasia (CAH)
Parenting Your Child with CAH
What are some parenting tips for caring for my child with CAH?
- Ask questions of the medical team—get all of your questions answered.
- Take your time at your child's doctor's visits.
- If you think of something to ask the medical team after the visit, don't hesitate to call them.
- Keep records of the information about your child's health. It may be useful to keep a notebook to write down phone numbers, names, questions, or to take notes at doctor's visits. You can print pages to make a Care Notebook from the Seattle Children's Hospital website. Other tips for record-keeping can be found in the DSD Guidelines.
- Realize that this can be a stressful situation for you and your family. CAH is a complex condition, and there is a lot to learn. It is important to manage your own stress so that you can have the energy to care for your child and make sensible decisions. Try some of the ideas found at the links below to help you learn to cope with stress:
- Talk to your child as they grow. Be open with your child about their physical differences. Help them understand what is going on with their medical condition. Be supportive of them and let them know that they are okay.
- Keeping secrets from your child (for example, about surgery they may have received) can produce mistrust of both your child’s doctors and yourself.
- Most important: Remember that being a new parent is an exciting time in your life. Enjoy your time with your baby and your new role as a parent.
What is it like to raise a child with CAH?
A child with CAH can live a healthy, normal life. Treatment will help your child's health to be normal, even though there is no cure. Your child can experience all of the things other children his or her age are doing. It is important that parents and other caregivers be aware of your child’s health condition. With the help of these different adults, your child can lead a normal life and participate in activities just like all their peers.
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Written and compiled by Kyla Boyse, RN and Talyah Sands. Reviewed by David E. Sandberg, Ph.D.