Dr. Jeff Buchhalter on the Ketogenic Diet and SUDEP

• Dr. Jeff Buchhalter talks about the potential connection between dietary therapies and reducing the risk of sudden unexpected deaths in epilepsy (SUDEP).
• This video interview was provided by The Charlie Foundation.

The Charlie Foundation interviewed Dr. Jeff Buchhalter, a pediatric neurologist with the University of Calgary and Alberta Children’s Hospital, about the potential connection between dietary therapies and reducing the risk of sudden unexpected deaths in epilepsy (SUDEP).

Highlights

An important risk factor for SUDEP is frequency of seizures, in particular generalized tonic-clonic seizures. As reported in the new SUDEP Guideline from the American Academy of Neurology and American Epilepsy Society, people with three or more generalized tonic-clonic seizures a year have a 15-fold increased risk of SUDEP. (Learn about the guideline.) It is also well established that the ketogenic diet is effective in controlling seizures in children.

While there has not been research confirming the ketogenic diet reduces the risk of SUDEP, Dr. Buchhalter says, “The circumstantial, connecting evidence is very strong. So when asked, ‘Is the ketogenic diet an important thing to do with regard to reducing risk?’ I answer, ‘Yes.’”

He also says a major question that exists now is when to start the diet? He says, “I think we are coming to a new age where the diet is going to be looked at sooner and sooner based on seizure type and epilepsy syndrome.”

Comments from our SUDEP Editor Dr. Daniel Friedman

At this time, there are no specific therapies – drugs, devices, or other treatments – that have been shown to prevent SUDEP. Many, but not all, witnessed SUDEP occur following a seizure when disturbances in breathing and heart function can be fatal. Having poorly controlled seizures, especially frequent generalized tonic-clonic seizures, is the single greatest risk factor for SUDEP. Having good seizure-control, especially not having tonic-clonic seizures, is associated with a low risk of SUDEP.

While there is a lack of direct studies demonstrating that interventions to improve seizure control lead to fewer SUDEPs, several studies suggest that the addition of effective anti-seizure medications or epilepsy surgery lowers SUDEP risk. These interventions presumably prevent SUDEP by reducing the frequency and severity of seizures. Therefore, it is also likely that other interventions that can reduce the frequency of seizures, including neurostimulation devices like the vagus nerve stimulator (VNS) or the responsive neurostimulator system (RNS) or dietary therapies such as the ketogenic or modified Atkins diet, could reduce SUDEP risk by improving seizure control though direct evidence is lacking.

At this time, the best strategy for reducing SUDEP risk is achieving the best seizure control possible. For some people living with epilepsy, it may mean controlling avoidable seizures by taking medications as prescribed, avoiding excess alcohol, and getting good sleep. For other people for whom seizures occur despite medications, it may mean exploring all available treatment options with an epilepsy specialist. For some, diet therapy maybe the most appropriate treatment to control seizures and lower chances of SUDEP, whereas additional medications, surgery, or device therapy may be more appropriate for others.

– Dr. Daniel Friedman

#AimForZero Risks from Seizures