First and foremost, remember that you and your child’s doctors are all on the same team, with the same objective – achieving the optimal health of your child. Good communication among team members is critical to ensuring that this very important goal is accomplished.

An important member of the team is your child’s primary care physician, either a family physician or a pediatrician. Your child’s primary care physician will do routine check-ups and immunizations, and provide care for acute illnesses and injuries. However, when your child has a relatively rare condition like Congenital Adrenal Hyperplasia, which affects only one in 15,000 children, it is possible that your primary care physician may have only read about this disease. This does not imply that he or she is not competent to care for your child. It simply means that one of your roles on the team is to help educate them about the details of CAH. In this computer age where medical information is so readily available, I have found that my patients with unusual medical problems often know as much, if not more, than their doctors about their particular condition. On the first visit, respectfully offer an article about CAH and a copy of the "illness guidelines" your endocrinologist has given you so that everyone on the team knows exactly what is to be done in the event of fever, serious illness, or injury.

Due to the complexity of Congenital Adrenal Hyperplasia, most children have a pediatric endocrinologist who will primarily deal with CAH related matters such as laboratory monitoring and medication dosages. They should communicate regularly with your primary care physician about their findings and recommendations. Girls with CAH will also likely have a pediatric urologist if there are genitourinary issues.

You and your child should feel comfortable and confident with the physicians you have chosen. Clinical expertise, effective communication skills, and a warm bedside manner are essential. Likewise, since you may interact frequently with each physician’s staff, you should feel that they are competent and efficient. If you have any concerns in this area, address them promptly with the doctor or office manager; physicians depend on their staff but may be unaware of problems.

It helps to clarify your understanding of the physician’s office policies to avoid unnecessary breakdowns in communication. There are a few things you may wish to ask the staff and/or physician: How far ahead should routine appointments be scheduled? Are same day appointments available for urgent problems? What about after hours? How are phone calls handled? Will my child usually see the same physician or will they see other physicians, physician assistants, or nurse practitioners? Even procedures like insurance billing and referrals should be clear to prevent inconvenience and disruptions in the best possible care of your child.

Prepare for the first visit by gathering your child’s immunization record, a list of their medications, and details of their medical and family history. If necessary, arrange to have previous medical records transferred to the new office. You will also need to bring your insurance information to each visit.

number of problems. For example, if you schedule your daughter for an ear infection, but decide to ask about a study you read on monitoring bone age in CAH patients while you’re there, don’t be surprised if the doctor seems rushed or asks you to schedule another appointment. (You wouldn’t schedule an appointment with your hairdresser for a haircut and expect to get a perm too, would you?)

Some people find it helpful to make a list of concerns and questions before each office visit. Be sure to bring your list but address the most important ones first. This will ensure that those are taken care of, while the less urgent ones can be reserved for another visit if necessary due to time constraints.

Family physicians and pediatricians are used to having more than one child in the exam room, but if you feel distracted by having your other children present, it may be difficult for you to pay full attention during the visit. Likewise, asking questions about another child in the family or asking the doctor to "take a quick look" at another child’s ear or rash, not only detracts from the appointment time set aside for the first child, but without the second child’s chart, review of their medical history and good documentation cannot occur.

Understand that while most physicians strive to be on time, unexpected situations do occur. Remember that at some point in the future, your child may require extra time while others have to wait. However, if you feel that your wait times are always excessive, discuss the problem openly with the physician or office manager. If the problem cannot be corrected, or if your schedule does not allow that flexibility, it is best to find a new office, rather than always feeling frustrated by the time you see the doctor.

Schedule regular preventive check-ups for your child. These are particularly important for children with chronic medical conditions like CAH. Preventive visits allow your family and your child’s doctor to develop a good working relationship and rapport under less stressful conditions than may occur during visits for acute illnesses. Even more importantly, these "wellness" visits ensure that your child is healthy, developing normally, and that future problems are prevented since normal growth and development are key markers for how well the cortisol levels are being maintained. Furthermore, other important health markers can be addressed during preventive visits, for example, checking immunizations and talking to adolescents about smoking.

Repeat instructions back to your doctor to be sure that you understand what you are supposed to do and make notes or request handouts that you can refer to later. If anything is not clear, do not hesitate to ask questions. This prevents confusion and can help avert serious errors.

Be sure to ask what to expect after you leave the office. Will you be notified of all test results? How do you obtain a copy of your child’s test results for your personal records? Will the report be sent to your child’s primary care provider? If your child was ill, how soon should they improve? What symptoms should you watch out for? What should you do if he or she gets worse? Is a follow-up appointment necessary to ensure that the treatment is working or the problem has resolved?

If you wish to discuss information that you have obtained from other sources such as the Internet, bring the article and/or source with you to help your child’s doctor address your questions objectively. Be aware that while the Internet has been wonderful for helping patients and families become more educated and involved in their health care, many websites offer inaccurate or incomplete information. Always discuss any concerns with your child’s doctor, especially if you are getting conflicting information. A few reputable sources on the web are American Academy of Family Physicians at http://www.familydoctor.org , American Academy of Pediatrics at http://www.aap.org , and http://www.hopkinsmedicine.org/pediatricendocrinology/cah/index.html and http://www.emedicine.com and of course, http://www.caresfoundation.org.

Sometimes, you and your child’s doctor will disagree about a treatment plan or a parenting issue. You should feel comfortable expressing your concerns and know that you are being heard. Likewise, your child’s doctor should take the time to explain why they are making a particular recommendation and whether other options may be equally acceptable. Frequent or irresolvable conflicts may signal a need to find a physician with whom you see "eye to eye."