Congenital Adrenal Hyperplasia in the Newborn 9
Frequently asked questions
At what age should I tell my child about his or her condition?
While there is no right or wrong age, it is important to always be honest and answer all of your
child’s questions. Telling the child is a gradual process. You will need to explain facts more than
once.
As part of doctor visits and daily medicines, a child may ask, ‘‘Why do the doctors take blood
from me every few months?’’ or ‘‘Why do I have to take this stuff?’’ These are excellent times to
discuss CAH.
Who else should know about my child’s CAH? How much should I tell
others?
Parents need to weigh the pros and cons of telling others. Telling too little leads to a sense of
secrecy, this can add to the parent’s feelings of shame. Telling too much could result in the child
being singled out, treated differently, and possibly teased and rejected by peers.
When your child is old enough, include the child in decisions about who should know outside
of the family, including school medical staff and daycare providers.
Will CAH affect my child’s height?
There are many factors that can affect a child’s growth. Regular doctor visits are important
because they help your doctor identify early warning signs of rapid growth, early puberty and
advanced bone age. All of these may lead to a reduced height as an adult.
Your doctor will do regular blood tests to check hormone levels, take X-rays of the hand to check
bone age, and chart your child’s growth and physical development. This allows your doctor to
prescribe the right treatment to help your child grow properly.
Is my child at an increased risk of infection because of being on steroids?
No. Some people who are on a high dose of steroids are at risk for infection because their
immune systems are suppressed. However, your child’s steroid dose will not harm his or her
immune function. Your child is given just enough steroids to replace the hormones that the
body should produce naturally.