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Neurological Disorders

What You Need to Know About Living With Epilepsy

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epilepsy-cameron boyce-cameron boyce foundation-sudep-neurologist

After losing their son to epilepsy, Victor & Libby Boyce founded the Cameron Boyce Foundation with the goal of educating patients and caregivers everywhere about living with epilepsy, treatment options, and social support resources.

Libby Boyce

Founder and Board Member, The Cameron Boyce Foundation

Victor Boyce

Founder and Board Member, The Cameron Boyce Foundation

What is the “Now What” initiative, and why is it important for those with epilepsy?

“Now What?” is a program designed for people newly diagnosed with epilepsy. It helps them take control of their health and figure out their next steps — the “now what?” The program provides crucial resources such as information about level four hospitals; up-to-date treatment options; and access to support groups, fact sheets, and medical information from epileptologists. 

What is the importance of social support for those affected by epilepsy and caregivers?

Researchers have long ago determined the connection between a strong social support system and good mental health. People with epilepsy are often stigmatized or marginalized, which is detrimental to their well-being. A strong social support for people with epilepsy is essential to positive aspects of health and wellness.


What is one piece of advice you have for other parents with an epileptic child?

Do not let epilepsy define your child. Support and nurture their interests. Encourage creative outlets as much as possible. Teach them to advocate for themselves regarding their epilepsy. Maintain a positive attitude even when it is tough to do so.

What do you hope to see as a result of all of the work you do at the Cameron Boyce Foundation?

Ultimately, we want to end epilepsy. Obviously, that is an enormous task. However, there are many great minds hard at work that have made tremendous progress to this end. We intend to bring epilepsy research to the forefront, similar to cancer, Parkinson’s, MS, and other conditions. We want people to talk about epilepsy and SUDEP in a non-stigmatized way. We want to help anyone that has epilepsy to improve the quality of their lives by providing the most current and impactful resources available. 

Vivek Mehta, M.D.

Epileptologist, Board Member, The Cameron Boyce Foundation

What are the benefits of a level four epilepsy center compared to other options?

Level four epilepsy centers earn a designation as the highest-level centers of expertise with doctors, nurses, and technology that are required to treat the most complex forms of epilepsy. Level four epilepsy centers have specially trained, board-certified epileptologists — neurologists with additional specific training on seizure disorders. Additionally, the team is composed of neurosurgeons who are specially trained in epilepsy surgery. Level four centers also contain highly specialized epilepsy monitoring units, which are patient rooms designed for patients with epilepsy to track their seizures. Additionally, the nurses in the epilepsy monitoring unit are trained to identify and treat seizures. Overall, level four centers are comprised of an entire team of doctors, nurses, and technologists whose sole focus is to help patients with seizure disorders.


What are the benefits of tracking your seizures?

Tracking seizures is important for several reasons. First, it can help identify triggers in your life which can be avoided to reduce your overall seizure burden. Second, tracking seizures can help identify effectiveness of medication and allow for adjustments in doses when seizures are poorly controlled. Conversely, they can allow for a reduction of seizure medication and potentially reduce side effects when higher doses are not necessary. Finally, tracking seizures can help identify longer trends such as increasing seizure frequency or severity which may prompt physicians to explore other treatment options.

Kimberly Pargeon, M.D.

Epileptologist, Board Member, The Cameron Boyce Foundation

What are the top steps someone should take after being diagnosed with epilepsy?

First and foremost, ask your provider what this means for you as a patient. Do you have any limitations at your job or at home? Do you need to start medications or other treatments, and if so, what are your choices? For most patients with an initial diagnosis of epilepsy, we recommend starting an anti-seizure medication. Many of these have side effects and they can interact with other medications, so it is important to ask your doctor about these and whether you will acclimate to those side effects.

It is also important to know if you require regular lab studies. Your doctor should also advise you how long you should stop driving and when you may be able to resume driving in your state. You or your doctor may need to report your diagnosis to the DMV/MVA in your state.

Finally, if you are seeing a general neurologist or a primary care physician, it may be important to ask for a referral, depending on your insurance coverage, to an epilepsy specialist or a level four epilepsy center. Although about 60% of patients will achieve good seizure control with the first or second anti-seizure medication they try, about a third of patients will ultimately become medically refractory and will need referral to a level four epilepsy center, where their diagnosis can be confirmed and they can be considered for other treatments and therapies. 


What is SUDEP, and what should people know about it?

This stands for “sudden unexpected death in epilepsy patients” and seems to account for about 2-18% of deaths in patients with epilepsy. This would include deaths in epilepsy patients, with or without a seizure, where there is no evidence of trauma, drowning, or status epilepticus, and a post-mortem examination does not identify a cause.

SUDEP is reported most often in young adults from ages 18-40, with some estimates suggesting the incidence can be up to 5 times higher in adults as compared to children. Some studies have tried to link genetic causes to SUDEP, but common risk factors include indicators of poor seizure control or more severe seizure, having nocturnal seizures or lack of nighttime supervision, not taking anti-seizure medications, and location of seizure focus. Other studies have linked possible causes of SUDEP to seizure-related cardiac and respiratory etiologies.

Regardless, the key is for patients and their families to be aware of SUDEP and the underlying risks in his or her individual situation. This can help patients and physicians discuss their mutual treatment goals and avoid a false sense of security regarding having a “few” seizures if the present regimen is not effectively treating a patient’s seizures. Also, this understanding allows patients and families to appropriately reduce these risks for SUDEP, when able, by improving compliance, making sure patients are adequately supervised at night, avoiding having patients sleep in the prone position, and helping families to consider monitoring devices if able.

Discussion also helps to lessen fears in lower-risk populations, and also lessens grief and blame in the event that a SUDEP occurs. Most families want to know about this before it happens and not after the fact.

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