Preparing for an appointment

Your child's doctor will look for developmental problems at regular checkups. If your child shows any symptoms of Rett syndrome, she or he will likely be referred to a pediatric neurologist or developmental pediatrician for testing and diagnosis.

Here's some information to help you get ready for your child's appointment. If possible, bring a family member or friend with you. A trusted companion can help you remember information and provide emotional support.

What you can do

Before your appointment, make a list of:

• Any unusual behavior or other signs. The doctor will examine your child carefully and watch for slowed growth and development, but your daily observations are very important.
• Any medications that your child takes. Include any vitamins, supplements, herbs and over-the-counter medicines, and their dosages.
• Questions to ask your child's doctor. Don't be afraid to ask questions when you don't understand something. If you run out of time, ask to speak with a nurse or leave a message for the doctor.

Questions to ask the doctor might include:

• Why do you think my child does (or doesn't) have Rett syndrome?
• Is there a way to confirm the diagnosis?
• What are other possible causes of my child's symptoms?
• If my child does have Rett syndrome, is there a way to tell how severe it is?
• What changes can I expect to see in my child over time?
• Can I take care of my child at home, or will I need to look for outside care or additional in-home support?
• What kind of special therapies do children with Rett syndrome need?
• How much and what kinds of regular medical care will my child need?
• What kind of support is available to families of children with Rett syndrome?
• How can I learn more about this disorder?
• What are my chances of having other children with Rett syndrome?

What to expect from your doctor

Your doctor may ask you questions such as:

• When did you first notice your child's unusual behavior or other signs that something may be wrong?
• What could your child do before that she or he can no longer do?
• How severe are your child's signs and symptoms? Are they getting progressively worse?
• What, if anything, seems to improve your child's symptoms?
• What, if anything, appears to worsen your child's symptoms?

Your doctor will ask additional questions based on your responses and your child's symptoms and needs. Preparing and anticipating questions will help you make the most of your appointment time.