Watch Rett experts answer frequently asked questions about DAYBUE®
Three experts from International Rett Syndrome Foundation (IRSF) Center of Excellence (COE) clinics share their professional recommendations based on their personal experience
Jane Lane, RN, BSN
Research Nurse Manager, Neurology Division of the University of Alabama Rett syndrome Clinic
Kathleen J. Motil, MD, PhD
Retired Professor of Pediatrics at Baylor College of Medicine and Gastroenterologist at Texas Children's Hospital
Alan Percy, MD
Pediatric Neurologist at the University of Alabama at Birmingham Rett Syndrome Clinic
These healthcare providers are paid Acadia consultants.
What benefits can I expect to see with DAYBUE?
What benefits can I expect to see with DAYBUE?
How soon will my loved one see improvements with DAYBUE?
How can we get ahead of potential GI side effects with DAYBUE?
My loved one's doctor started them at a lower dose of DAYBUE. Does this mean they won't have diarrhea?
My loved one is older. Can they still benefit from DAYBUE?
If my loved one stops DAYBUE, will they keep the improvements they've gained?
How long will my child take DAYBUE?
We stopped DAYBUE but are interested in starting again. How should we approach this?
I am concerned about potential Gl side effects and how my child will tolerate DAYBUE. What shall I ask my child's doctor before starting DAYBUE?
Our child’s doctor started her at a lower dose of DAYBUE due to diarrhea concerns. When can we expect to see improvements?
My child started at the lower dose of DAYBUE. What’s the best way to get to the weight-based recommended dose?
My child had a side effect, and my doctor reduced the dose of DAYBUE. Will we still see symptom improvement?
I’m worried about side effects. How do I know if starting DAYBUE is worth it?
How to prepare for potential GI side effects before starting DAYBUE
What benefits can I expect to see with DAYBUE?
How soon will my loved one see improvements with DAYBUE?
How can we get ahead of potential GI side effects with DAYBUE?
My loved one's doctor started them at a lower dose of DAYBUE. Does this mean they won't have diarrhea?
My loved one is older. Can they still benefit from DAYBUE?
If my loved one stops DAYBUE, will they keep the improvements they've gained?
How long will my child take DAYBUE?
We stopped DAYBUE but are interested in starting again. How should we approach this?
I am concerned about potential Gl side effects and how my child will tolerate DAYBUE. What shall I ask my child's doctor before starting DAYBUE?
Our child’s doctor started her at a lower dose of DAYBUE due to diarrhea concerns. When can we expect to see improvements?
My child started at the lower dose of DAYBUE. What’s the best way to get to the weight-based recommended dose?
My child had a side effect, and my doctor reduced the dose of DAYBUE. Will we still see symptom improvement?
I’m worried about side effects. How do I know if starting DAYBUE is worth it?
How to prepare for potential GI side effects before starting DAYBUE
Important Notes:
The effectiveness and safety of DAYBUE were evaluated in the 12-week LAVENDER™ clinical trial of 187 female patients aged 5 to 20 with Rett syndrome. DAYBUE was shown to significantly reduce the severity in signs and symptoms of Rett syndrome as measured by the Rett Syndrome Behaviour Questionnaire (RSBQ) compared to placebo. RSBQ assessed the following signs and symptoms: breathing, hand movements or stereotypies, repetitive behaviors, nighttime behaviors, vocalizations, facial expressions, eye gaze, and mood
Because everyone with Rett syndrome is unique—with a unique set of symptoms—the response to DAYBUE may be different for each individual. Always speak with a healthcare provider to learn what to expect when starting DAYBUE, including side effects
