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Preparing for your appointment
By Mayo Clinic staffYour 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.
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
Take these steps to prepare:
- Write down any unusual behavior or other signs. The specialist will examine your child carefully and watch for slowed growth and development, but your daily observations are very 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. 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?
- 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?
- 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 is likely to ask you a number of questions. Being ready to answer them may reserve time to go over anything you want to spend more time on. Your doctor may ask:
- When did you first begin noticing your child's unusual behavior or other signs that something may be wrong?
- Describe the signs and symptoms. How severe are they? 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?
- What did your child used to be able to do that she or he can no longer do?
- Shultz RJ, et al. Rett syndrome. http://www.uptodate.com/home/index.html. Accessed May 14, 2010.
- What is Rett syndrome? National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/upload/rett_syndrome_2006.pdf#page=6. Accessed May 14, 2010.
- Rett syndrome. Genetics Home Reference. U.S. National Library of Medicine. http://ghr.nlm.nih.gov/condition=rettsyndrome. Accessed May 14, 2010.
- Rett syndrome. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/health/topics/Rett_Syndrome.cfm?renderforprint=1. Accessed May 13, 2010.
- Chahrour M, et al. The story of Rett syndrome: From clinic to neurobiology. Neuron. 2007;56:422.
- Hagberg B, et al. An update on clinically applicable diagnostic criteria in Rett syndrome. European Journal of Pediatric Neurology. 2002;6:293.
- Rett's Disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR. 4th ed. Arlington, Va.: American Psychiatric Association; 2000. http://www.psychiatryonline.com. Accessed June 8, 2010.
- Lotan M, et al. Management of young children with Rett disorder in the controlled multi-sensory (Snoezelen) environment. Brain & Development 2005;27:S88.
- Alternative therapeutic intervention for individuals with Rett syndrome. The Scientific World Journal. 2007;29:698.
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