Starting Diacomit (stiripentol)Your first 90 days with Dravet syndrome: the steps, the dates and who to call

How you take it

Capsules swallowed whole with water, or powder mixed in water, 2 or 3 times a day during a meal. The dose depends on your child's weight.

Before your first dose

• Diacomit is approved for people who also take clobazam. Your child's doctor confirms that clobazam is part of the treatment.
• A blood count, because Diacomit can lower white blood cells and platelets. The test repeats every 6 months.
• A choice between capsules and powder. The powder contains phenylalanine, so tell the doctor if your child has PKU.
• A full medicine check. Diacomit raises clobazam levels, and some other seizure medicines can lower Diacomit levels.
• Your insurance approves the medicine. The Biocodex By Your Side team at PANTHERx helps with coverage and costs at 833-248-0467.
• PANTHERx Rare Pharmacy, the only pharmacy that supplies Diacomit, delivers it to your home.

The first 90 days

1. Before day 1Blood count before the first dose
2. Week beforeInsurance approval and shipment
3. Day 1First dose, 50mg/kg a day in 2 or 3 doses
4. Timing variesFirst refill. How long a supply lasts depends on the dose
5. About month 6, then every 180 daysBlood count, then every 6 months
6. Before 1 yearInsurance renewal