Getting started with DAYBUE
Ellie, age 15, living with Rett syndrome, with her parents
If you have questions when starting treatment, support is available through Acadia Connect® to help you along the way.
Taken twice daily, in the morning and evening
Strawberry flavored
Able to be taken with or without food
Starting treatment with DAYBUE?
This guide can help you and your child prepare for and get the most out of treatment with DAYBUE.
Answer questions and offer treatment support for DAYBUE
Provide information about potential side effects
Offer clinical recommendations (when appropriate)
Store DAYBUE in a refrigerator at a temperature between 36°F and 46°F (2°C to 8°C)
Always store DAYBUE in an upright position
Do not freeze
Discard any unused DAYBUE after 14 days of opening the bottle
Keep the child-resistant cap tightly closed
Keep DAYBUE and all medicines out of the reach of children
Track your child’s treatment journey each day
Use the DAYBUE Daily Treatment Journal to help you identify small changes that may impact daily life and help you and your care team stay informed.
DAYBUE may be taken orally or via a gastrostomy (G) tube. If your child has a gastrojejunal (GJ) tube, DAYBUE must be given through the G-port
Give DAYBUE exactly as your doctor tells you to
Measure each dose of DAYBUE accurately using the measuring device provided by the specialty pharmacy. Do not use a household measuring cup
If your child misses a dose of DAYBUE, skip that dose and give the next dose at the usual time. Do not give 2 doses to make up the missed dose
If your child vomits after taking a dose of DAYBUE, do not give another dose to make up for that dose. Wait and give the next dose at the next scheduled time
DAYBUE can be given with or without food
Use something cold to numb the tastebuds like ice cream, an ice cube, or cold water before giving DAYBUE
Dip your medication syringe in sweet syrup* and gently squirt DAYBUE into the side of your child’s cheek. Do not squirt into the back of the throat, as this could cause choking
Use play to help increase your child’s involvement in taking DAYBUE, like pretending to give medicine to a favorite toy
Give a strong-tasting food or drink afterwards to help remove the taste
When you are done, consider giving your child a reward, like playing a favorite game
Consider keeping a log to track stool consistency/frequency for one week before starting treatment
Tell your doctor if you are giving your child stool softeners and other medicines or dietary supplements for the treatment of constipation
Stop use of laxatives
Talk to your doctor about any recommended dietary changes including potential use of supplemental fiber
Take steps to plan ahead
This might include stocking up on supplies like wipes, chucks, and extra diapers, or creating a backup bag with a change of clothes for when you’re away from home.
Helpful tip before treatment begins
Letting your child’s school or other members of the care team know about possible treatment effects is a great step to take before starting DAYBUE.
Tell your doctor if your child has diarrhea
Keep an eye on your child's fluid intake and watch for signs of dehydration, increase oral fluids if needed. Your doctor may also suggest a fiber supplement, if appropriate
It is recommended that you have antidiarrheal medications such as loperamide (IMODIUM) at home so you can manage diarrhea as needed
Your doctor may reduce the dose of DAYBUE or may ask you to stop giving your child DAYBUE until diarrhea improves. Do not stop giving DAYBUE without talking to your doctor
Vomiting and swallowing can be issues for individuals with Rett syndrome. Talk to your doctor about ways to manage vomiting before starting DAYBUE
Have meals somewhere calm. Your child’s stomach can be sensitive to stress. Finding somewhere relaxed to eat can reduce the likelihood of vomiting
Avoid meals before bedtime or nap time
Keep a meal journal. A journal can help you track connections between certain foods and vomiting. By removing foods one-by-one you can figure out if a particular food is causing vomiting
How will I receive DAYBUE?
DAYBUE will be shipped directly to your home through AnovoRx, a specialty pharmacy. Each delivery will contain one month’s supply of your child’s prescription.
I need assistance with a delivery. Who should I contact?
Contact your Acadia Connect Nurse Care Coordinator for delivery support at 1-844-737-2223, Monday–Friday, 8:00
Overview brochure of Acadia Connect includes delivery, support offerings, and resources. Download now
How should DAYBUE be stored?
Store DAYBUE in a refrigerator at a temperature between 36°F to 46°F (2°C to 8°C). Always store DAYBUE in an upright position and do not freeze.
How often should I give DAYBUE to my child?
Give DAYBUE exactly as your doctor tells you. DAYBUE is taken twice daily, in the morning and evening. DAYBUE can be taken with or without food.
What if my child experiences diarrhea while on treatment?
If your child experiences diarrhea while taking DAYBUE, tell their doctor right away. Your child’s doctor may reduce or interrupt the dose until side effects improve.
For more information, please see helpful tips to consider for managing diarrhea
