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Preparing for your appointment
By Mayo Clinic staffYour child's doctor will look for developmental problems at regular checkups. If he or she shows any symptoms of Rett syndrome, your child will likely be referred to a pediatric neurologist or developmental pediatrician for a thorough clinical evaluation.
It's a good idea to be well-prepared for your child's appointment. Here's some information that may help you get ready.
What you can do
- Write down all the changes that you and others have observed in your child's behavior. The specialist will examine your child carefully and monitor growth and development, but your daily observations are also extremely important.
- Make a list of any medications, including vitamins, herbs and over-the-counter medicines that your child is taking.
- If possible, bring a family member or friend with you. This is important not just to help you remember information but also for emotional support.
- Write down questions that you want to ask your child's doctor. Don't be afraid to ask questions or to speak up when you don't understand something that's said. And if you run out of time, ask to speak with a nurse or physician assistant, or leave a message for the doctor.
Questions to ask might include:
- Why do you think my child does (or doesn't) have Rett syndrome?
- Is there a way to confirm the diagnosis?
- 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?
- 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?
