Health
Learning about common health needs can help you talk with your care team.
This is not medical advice. Talk with your doctor.
Seizures
In an emergency, call 911.
Some people with Rett have seizures. Some Rett "spells" can look like seizures but are not. Care guides suggest keeping a log: the date, time, how long it lasted, what it looked like, and a video if you can. Share it with your neurologist.
Source: Consensus guidelines on managing Rett syndrome (2020)
Sleep and sleep studies
Trouble sleeping is very common in Rett. The IRSF guide says to tell your doctor about snoring, pauses in breathing, gasping at night, or restless sleep. Your doctor may send you to sleep medicine for a sleep study.
Stomach and GI medicines
Constipation and reflux are very common. The IRSF guide lists medicines doctors often use, like laxatives for constipation and acid blockers for reflux. Your doctor may send you to a GI doctor.
Long mealtimes, coughing or choking while eating, or poor weight gain are worth raising with your doctor. Sudden, bad belly pain with a swollen belly needs care right away.