Types of Medication
Children and adults with Dravet Syndrome typically need to be taking a combination of medications to help control or reduce seizures. It is always important to remember that medication regimes remain very individual to the patient.
As with all medications, it is very important to comply with all the instructions provided when administering medications to your child, especially dosing and course completion. We suggest you speak to your child’s doctor if you have any concerns over their medication and it is essential that you speak to your medical team before altering any medications.
Individuals with Dravet Syndrome can be very susceptible to the slightest change so all medication changes must be done in consultation with a medical professional.
Treatments currently available for Dravet Syndrome are listed below. These treatments focus on controlling or minimising seizures in order to reduce their impact on development and injuries.
- Sodium valproate: Also known as Epilim, this is an anticonvulsant used in the treatment of epilepsy. The intravenous formulations (i.e. directly into a vein) are used in emergency scenarios.
- Clobazam: A benzodiazepine drug approved for use with other treatments, for patients with epilepsy who have not responded to or who are resistant to first-line drugs. Note: in October 2023, 'Tapclob' changed its name to Clobazam Martindale Pharma Oral Suspension. We have been assured by the manufacturer that it is the same product, just with a new name. Pack sizes remain the same, with 150ml and 250ml available in both strengths (5mg/5ml and 10mg/5ml).
- Stiripentol: Is added to sodium valproate and clobazam for treating people with Dravet Syndrome whose seizures are not adequately controlled with valproate and clobazam alone. Stiripentol is currently only licenced for use in Dravet Syndrome.
- Cannabidiol: Also known as Epidyolex, cannibidiol oral solution is a plant-derived cannabis-based medicine. It is available as a possible treatment for seizures associated with Dravet Syndrome in conjunction with clobazam for people aged 2 years and over.
- Topiramate: An anticonvulsant drug used to treat epilepsy in children and adults.
- Levetiracetam: An anticonvulsant medication used to treat epilepsy; it has been approved for treatment as a single medication in the case of partial seizures, or as an add on medication for partial, myoclonic and tonic clonic seizures.
- Bromides: This is one of the older anti-seizure medications. It is not prescribed much in the UK but is often the first-line medication for Dravet Syndrome in Germany and Japan. It is used by some UK Dravet Syndrome specialists.
- Fenfluramine: Fenfluramine is an anti-seizure medication approved by NICE in England and Wales on 31st May 2022 for those aged 2 years and above, as an add-on therapy to two other anti-epileptic medicines in Dravet Syndrome. Read more about this new treatment, including timelines for accessing on the NHS here.
Medications that should NOT be used with Dravet Syndrome
Medications which can increase or prolong seizures in some individuals with Dravet Syndrome include:
Carbamazepine, gabapentin, lamotrigine, oxcarbazepine, phenytoin, pregabalin, tiagabine, and vigabatrin (although phenytoin can increase seizures if used as a daily maintenance medication, it can be useful when used intravenously as an emergency treatment).
Prescription of Generic versus Branded Medications
Generic names are the names given to the main ingredient of the medication (for example Sodium Valproate); branded names are those given by the drug company making the medication (for example Epilim) and refer to specific formulations made by a particular company. The important thing to remember is that you stick with the brand that was initially prescribed, assuming it is working for your child. So, for example, if you have always been prescribed Epilim it is best to stick with that rather than a different form of Sodium Valproate as there is a chance that a different version of your child’s epilepsy medicine would have a different effect.
The National Institute for Health and Care Excellence (NICE) recommends that people with epilepsy continue to get the same version of their epilepsy medicine wherever possible. If the person who prescribes your epilepsy medicine wants to change your child’s version, they should discuss this with you first.
Emergency Medication and Protocols
It may sometimes be necessary for you to give your child emergency medication to control their seizures. Find out more here.
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