Most parents worry about their child’s mental and social development at some point or another. But if yours has classic congenital adrenal hyperplasia (CAH), there may be specific challenges that concern you. The good news is you likely have little to fear.
“If a child with classic CAH is treated early, and consistently, they usually end up doing well emotionally and socially,” says Heino Meyer-Bahlburg, PhD, a professor of clinical psychology at Columbia University Irving Medical Center in New York City.
But living with a condition that needs lifelong medication could potentially affect their mental health over time. Here’s how to best support your child.
Classic CAH in Early Childhood
Long-term treatment with high dose steroids in CAH may cause kids to be shorter and weigh more than those that don't have it. While there are few studies that look at the issue of mental health in kids with CAH, those that are available show that this condition does impact the mental health of both child and parent. Dealing with a lifetime illness could trigger depression and anxiety. Doctors should be aware of the potential for mental health issues and mental health professionals should be familiar with assessing and managing CAH.
Joining a support group for parents and kids with classic CAH in early childhood may put you at ease.
“Parents often feel reassured if their daughters have play dates with other girls who share their same interests,” says Meyer-Bahlburg.
In girls with CAH and severely atypical genitalia, experts suggest a discussion about early reconstruction. In those with minimally atypical genitals, parents should be informed about surgical options, including delaying surgery and/or observation until the child is older.
That said, your child may be self-conscious if her genitals look different from those of her friends, says Sandberg. It’s recommended that you make the decision about surgery with their entire medical team. That includes their endocrinologist, a pediatric surgeon, and mental health professionals.
“Most patients with classic CAH say that they are happy that they had the surgery done in early childhood,” says Sandberg.
There’s not a lot of research on how classic CAH affects children assigned male at birth. But a 2018 review of 11 studies found they can have difficulties, too.
“Some boys with classic CAH may go through early puberty, which has some social advantages because they’re taller and stronger than their classmates,” says Ulrick Vieux, DO, director of child and adolescent psychiatry education at Hackensack University Medical Center in Hackensack, NJ.
But higher levels of testosterone may also mean stronger emotions, including feeling more aggressive. Early puberty can also stunt growth, so they may end up shorter than their peers in the long term, Vieux says.
As kids get older, parents need to prepare themselves for questions, like “Why do I need to take hormones every day?”
“Initially, you’ll want to give them a simple explanation, like their body doesn’t make enough of a particular juice and this medicine helps to replace it,” says Meyer-Bahlburg. Later, you’ll be able to explain that this juice is an important hormone. And if they don’t get enough, it can impact their entire body.
It’s also important to teach your child ways to help manage anxiety. For example, kids with classic CAH usually get their blood drawn several times a year. This can be stressful. Sandberg recommends asking their health care team about distraction techniques that can make the process easier, like deep breathing exercises.
Most kids with classic CAH don’t have any learning disabilities. But if your child’s condition was poorly managed in the past, they may have issues with their thinking skills, says Sandberg. In these cases, you’ll want to set up a meeting with their school and ask for a specialized learning plan. This can be:
- An individualized education plan (IEP), which provides specialized instruction and related services
- A 504 plan, which allows your child certain accommodations because of their disability
Managing a Lifetime Condition
Classic CAH may become harder to deal with as your child gets older.
“It’s less specific to classic CAH and more about the burden of chronic illness: They need to miss school several times a year to see their endocrinologist, for example, and they may become self-conscious if they need to wear a Med Alert bracelet,” says Sandberg.
And they may not welcome specialists who constantly poke around their genitals.
“It’s part of a medical checkup for a patient with classic CAH. But for an older child or a teen, it can feel very invasive,” says Sandberg.
One of the best ways to help your child manage the emotional aspects of classic CAH is to try to give them a feeling of control.
“I recently saw a 12-year-old, and when I asked her about her medical alert bracelet, she got defensive and told me it was none of my business,” says Sandberg. “I explained to her that if she said this to other kids, they’d pick up on the fact that she was sensitive and use it as an excuse to tease her. Instead, it would be better if she took a couple minutes to explain her classic CAH to them. It’s a way to turn the conversation around so that she feels more empowered.”
It’s also important to make sure your tween or teen feels comfortable with their sexuality. Children with classic CAH who are assigned female are birth are slightly more likely to be bisexual than those without the condition.
“You’ll want your child to know that you’re comfortable talking to them about their feelings, and that you respect their choices,” says Meyer-Bahlburg.
Finally, it’s important to give your child with classic CAH freedom to learn and grow.
“Many parents of kids with classic CAH tend to be overprotective,” says Sandberg. “But just like any child, it’s important for them to have the time and space to separate from their family.”
This helps build confidence and self-esteem. It also teaches them independence, which they’ll need when it’s time to manage their condition as an adult.
“You want to make sure that their classic CAH is well-controlled, but you also want them to develop their own autonomy,” says Sandberg. “It’s a fine line, but with a little love and patience, most families are able to navigate it successfully.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Heino Meyer-Bahlburg, PhD, professor of clinical psychology, Columbia University Irving Medical Center, New York City.
David Sandberg, PhD, pediatric psychologist, University of Michigan Medical Center, Ann Arbor.
Ulrick Vieux, DO, director of child and adolescent psychiatry education, Hackensack University Medical Center, Hackensack, NJ.
Endocrine Reviews: “Congenital Adrenal Hyperplasia – Current Insights in Pathophysiology, Diagnostics, and Management.”
Frontiers in Behavioral Neuroscience: “Sexual Orientation in Individuals with Congenital Adrenal Hyperplasia: A Systematic Review.”
The Journal of Clinical Endocrinology & Metabolism: "Congenital Adrenal Hyperplasia Due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline."
