Medications and therapies

Assistance with Medications

Do NOT give dilantin (phenytoin), tegretol (carbamazepine, carbatrol), lamictal (lamotrigine, oxcarbazepine), vigabatrin.

Medicinal Cannabis Statement

About 1000 people in Canada have Dravet Spectrum disorders, but many are undiagnosed.
About 72,000 Canadians have epilepsy not fully controlled by existing medications. As the Canadian Network for families, friends and caregivers of people with Dravet Spectrum disorders, supports research and clinical trials leading to a better understanding of Dravet spectrum disorders and the development of safe and effective treatments.
One evolving area of research is the medicinal effectiveness of cannabis components and derivatives.
The advancement of scientific knowledge around medicinal cannabis must be pursued. encourages the responsible study of the safety, efficacy, dose and most effective delivery mechanisms for the treatment of refractory epilepsies. supports and encourages open conversations with your medical teams about possible and potential therapies and treatments.
Always work closely with your medical team before changing any therapies or treatments.

Stiripentol Accessibility

Stiripentol (Diacomit®) has now been approved by Health Canada to be marketed in Canada. Stiripentol has been authorized for use in patients with Dravet syndrome (SMEI) as an add-on medication when tonic-clonic seizures are not adequately controlled with clobazam and valproate alone.

Therefore, this medication is no longer accessed via the Special Access Program (SAP). Your hospital pharmacies will not be able to provide this to you. You must check with your community pharmacies and let them know you will be ordering this medication.

During the initial switch-over from the SAP to an approved drug product, some people experienced difficulty accessing stiripentol. Hopefully, these issues have been resolved.  If you are experiencing any difficulty please contact us.

A recommendation is pending from the Common Drug Review as to whether provincial drug plans (except Québec) should cover this medication. made a patient group submission which will be considered during the review process.

These are the DIN’s for the various dosages:

Diacomit® 250 mg Capsules Pack of 60 capsules
Diacomit® 250 mg powder for suspension Pack of 60 sachets
Diacomit® 500 mg Capsules Pack of 60 capsules
Diacomit® 500 mg powder for suspension Pack of 60 sachets

Drug shortages


Health Canada Public Consultation on Drug Shortages

There will be a 6-week public consultation on drug shortage notification (May 22-July 5, 2014).  Anyone can share their feedback on the current notification system that we have in Canada. Click here for more information.

Clobazam Availability

Last Update: May 16, 2014

Clobazam shortage: APO-clobazam (Apotex) is no longer in shortage, should be on the shelves now. PMS-clobazam and Teva-clobazam were expected to be back on the shelves early May, but as of mid-May these medications are still listed on as current drug shortages. The estimated resupply date for PMS-clobazam has now been changed to May 27, 2013 (add ~ 7-10 days for the medication to reach pharmacies). In addition, Frisum is in short supply now too. Lundbeck supplied all the available Frisium to the market during the shortage crisis of the generic clobazam products and will not be able to re-stock until July. Send us a message if you experience any difficulties obtaining your child’s medication, either a generic (clobazam) or the brand name (Frisium).

If your child takes this medication – you should contact your pharmacy and ask about the supply of your child’s drug.

Shortages of Rescue Medications (injectable/solution formulations)

Last Update: May 15, 2014

There are shortages of several IV formulation anti-seizure drugs that may be prescribed for use as emergency rescue medications for status epilepticus.  When prescribed for at home use the medication is typically administered buccally or intranasally.

Medications in short supply include liquid formulations of lorazepam, midazolam and diazepam. Specific details about the products in shortage are available on

Send us a message if any of these rescue med shortages have affected your child’s care either at home, emerg, or as an in-patient.


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Dravet Day 2018 Montreal
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