Starting Epidiolex (cannabidiol)Your first 90 days with dravet syndrome: the steps, the dates and who to call

How you take it

A strawberry-flavored liquid given twice a day with the oral syringe from the carton. The dose depends on your child's weight. Give it the same way with meals each day.

Before your first dose

• A blood test of the liver, because Epidiolex can raise liver enzymes. The test repeats 1, 3 and 6 months after starting.
• A full medicine check. Valproate raises the chance of liver problems, and clobazam can add sleepiness.
• A check for sesame allergy, because Epidiolex contains sesame seed oil.
• Your insurance approves the medicine. Jazz Pharmaceuticals, the drugmaker, answers cost questions at 1-833-426-4243.
• A specialty pharmacy calls you before it ships the medicine. Answer calls from numbers you do not know during this time.

The first 90 days

1. Before day 1Liver blood test before the first dose
2. Week beforeInsurance approval and the pharmacy's call
3. Day 1First dose, 2.5mg/kg twice a day
4. Day 8Possible step to 5mg/kg twice a day
5. Week 3 and laterFurther weekly steps, if needed
6. Month 1Liver blood test, 1 month in
7. Day 30 to 84First refill, timing depends on weight and dose
8. 12 weeks after openingThrow away any medicine left 12 weeks after opening the bottle
9. Month 3Liver blood test, 3 months in
10. Month 6Liver blood test, 6 months in
11. Before 1 yearInsurance renewal