A Study of Development and Behavior in Children with CAH

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Dr. Sheri Berenbaum of Southern Illinois University in Carbondale, Illinois has been working with the Texas Department of Health to study development and behavior in children with CAH detected through newborn screening. This is part of an ongoing series of studies that she has been conducting since 1985.

Why study behavior in children with CAH?
There are a number of important reasons to study behavior in children with CAH.

Parents often have a lot of questions about the development of their children and want to know whether children with CAH are different in any way.
Children with CAH provide a very valuable opportunity to examine the effects of early hormones on later behavior, because they are exposed to higher-than-average levels of androgens during the time when the brain is developing.
Controversies about the treatment of children with CAH depend on solid scientific studies. This includes the benefits of prenatal treatment for CAH, and the best age to do surgery on the genitalia of girls with CAH.

What are the findings from studies of children with CAH?
There are a lot of questions that are still in the process of being answered, but there are a few things that we have learned, mostly from studying children with CAH who were diagnosed clinically-not through newborn screening.

It is very typical for girls With CAH to play with boys' toys.
Girls with CAH are much more likely than their sisters without CAH to play with toy trucks and cars and to participate in active sports. And these interests seem to continue into adolescence: teenage girls with CAH like activities that are more traditionally done by boys, such as working on cars and engines and participating in team sports. We think that this interest in boys' toys and activities results from having high levels of androgens before they were born.
Most girls with CAH identify as typical girls and like being girls.
Although many girls with CAH play with boys'toys, most girls with CAH behave like typical girls in lots of other ways and they like being girls.
But not all children are alike.
Some girls with CAH don't play with boys'toys or participate in sports. A very small number of girls with CAH say that they would rather be a boy.

What kinds of studies are going on now?
We are trying to answer a number of different questions. Here's a sample.

Are girls with CAH who were detected through newborn screening similar to girls with CAH who were diagnosed clinically with respect to their interest in toy trucks and sports?

Do girls with CAH have higher spatial ability than their sisters without CAH?
We ask this question because we know that boys-on average-have better spatial ability than girls-on average. Some people have also suggested that children who play sports have better spatial ability, so we might expect girls with CAH to have better spatial ability for that reason too.  

Are children with CAH-boys and girls-more aggressive than their brothers and sisters without CAH?
We ask this question because some people have suggested that aggression is related to hormones in the blood and some children with CAH still have high levels of androgen even when they take their medication.

What should you do if you have questions about your child's behavior?

  • If you have a serious concern about your child's behavior, you should contact your child's physician who can give you the name of a professional who can talk to you and your child. This applies to your children with and without CAH.
  • If you have a question about what you might expect for your child with CAH that relates to behavior, and are willing to share your question with others (without your name) you can send them to us for Dr. Berenbaum to answer in our next newsletter. We are going to start a question-and-answer column about behavior in children with CAH, because we know that a lot of parents have the same questions and concerns.
  • If you have a specific question about the behavior of your child with CAH, you can write directly to Dr. Berenbaum. Her mailing address is: Department of Behavioral and Social Sciences, School of Medicine, Southern Illinois University, Carbondale, IL 62901-6517. You can also reach her by Email

What should you do if you want to take part in studies of behavior in children with CAH?

If you want to participate in Dr. Berenbaum's studies-or want to know some more about the studies before you decide-you can write to her at the address above. Be sure to include your telephone number so that she can contact you. There are different levels of participation-from simply filling out questionnaires about your child's behavior to having someone visit you in your home to observe your child. You may choose to participate in some parts of the study and not others. Even if you decide to participate, you may change your mind at any time.


External email links are provided to you as a courtesy. Please be advised that you are not emailing the Texas Department of State Health Services (DSHS) and DSHS policies do not apply should you choose to correspond.

 

Last updated February 22, 2011