SUDEP stands for Sudden Unexpected Death in Epilepsy.
SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP is believed to be the cause of approximately 10% of seizure related deaths. Unfortunately, due to the unpredictable nature of SUDEP it remains an understudied phenomena. Although all patients with Epilepsy are at some risk for SUDEP, research suggests several populations of patients who are at increased risk. Dr. Danielle McBrian, pediatric epileptologist, will talk to us about the topic
What can be done to prevent SUDEP? More recently, a growing number of electronic and mechanical devices are being marketed as an added safeguard for patients with seizures and Epilepsy.
In theory they could lower the chance of SUDEP by reducing the response time in which medical care is administered. Over the next few issues, we will discuss several available devices in no particular order. We do not endorse any of these and are solely discussing them for informative purposes only. The EMFIT movement monitor is the first one that will be presented.
Dr. Danielle McBrian, pediatric epileptologist of the Northeast Regional Epilepsy Group talks about SUDEP
What is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP is believed to be the cause of approximately 10% of seizure related deaths. Unfortunately, due to the unpredictable nature of SUDEP it remains an understudied phenomena. Our understanding of this process is very limited and much remains to be investigated about these occurrences and what causes them. Thankfully, SUDEP is relatively rare, occurring in about 1 out of 1000 patients with epilepsy per year, but its consequences can be catastrophic.
Who is at risk for SUDEP?
Although all patients with Epilepsy are at some risk for SUDEP, research suggests several populations of patients who are at increased risk. These include patients with a long history of poorly controlled seizures. Patients with generalized tonic-clonic seizures ‘Grand Mal’ are at increased risk as opposed to other types of seizures such as absence ‘Petit Mal’ seizures or complex partial ‘psychomotor’ seizures. SUDEP also appears to typically affect younger individuals with epilepsy. Approximately 75% of all SUDEP deaths occur in individuals between 20 to 50 years of age. Children, have a relatively low risk of SUDEP.
What are the causes?
Several theories exist as to the cause of SUDEP. These typically center on the interruption of either cardiac or respiratory function during or following a seizure event. Possible causes include cardiac arrest or arrhythmias induced by signals from the seizing brain or poor oxygenation as the result of deficient respiratory drive. Additionally, decreased awareness following a seizure could lead to suffocation similar to that seen in Sudden Infant Death Syndrome (SIDS).
Are there any additional risk factors that increase the chance that SUDEP will occur?
Several additional risk factors have been identified that appear to increase the likelihood of SUDEP. A higher incidence of SUDEP has been noted in patients with varying degrees of cognitive or neurological impairment. Patients with poorly controlled seizures despite multiple antiepileptic medications are also at increased risk. Poor compliance with medications as well as the use of alcohol or illicit drugs could increase your chance of having a SUDEP event. Nocturnal seizures also pose an increased risk.
What can patients and their families do to prevent SUDEP?
Naturally, It can be a scary subject, but knowledge of SUDEP and the factors that are thought to increase the chances of being affected by it are crucial to its prevention. Since SUDEP is very rare, some physicians may shy away from discussing the topic but knowing is important. First and foremost, patients and families must work together with their doctors to obtain optimal seizure control. Taking anti-seizure medication consistently and regular follow ups with the patient’s health care provider are key. Autopsies show that many of those who die from SUDEP have low levels of antiepileptic medications in their system.
It is also important to educate yourself, your family and friends about seizures, develop a management plan for the seizure events, and family and friends should learn basic life support skills.
Are there any special considerations for parents?
Understandably, parents of children with Epilepsy may tend to over restrict their child’s activities. This often leads to a lower quality of life for the child who may already feel different from his or her peers. However, children MUST continue to participate in normal childhood activities, with intelligent precautions such as avoidance of heights and unattended swimming. There is no debate that the child’s quality of life has a major influence in the their long-term physical and psychological health.
Is there anything else that can be done to prevent SUDEP?
More recently, a growing number of electronic and mechanical devices are being marketed as an added safeguard for patients with seizures and Epilepsy. These products monitor the patient for seizure activity and are expected to alert family members when a seizure is occurring. They achieve this by recognizing rhythmic movements or detecting changes in heart rate which can occur during a seizure. In theory they could lower the chance of SUDEP by reducing the response time in which medical care is administered. It is important to note that our medical group does not endorse any of these devices in particular. There is no specific reason as to why the EMFIT product is being presented first in this series. This information is being shared in our newsletter for informative purposes only.
What are some of these “seizure-detecting devices”?
The most basic seizure detection device is the use of a baby monitor. This allows family members to hear abnormal sounds coming from patients’ room during a seizure event. There are limitations with this device for accurate seizure detection in that not all seizures may be audible or the family member may not hear the event and sleep through the seizure.
Given these limitations, companies have been investigating other devices for detecting seizures that may prove more accurate and dependable. One such device is the EMFIT movement monitor which was developed be a company in Finland. At the request of a father of a young girl with Epilepsy, the EMFIT engineers created a new product that was designed to detect seizures to lessen the chances of SUDEP.
The EMFIT monitor uses a special sensor that produces small electric signals when activated by movement. This sensor is placed under the mattress and is programmed to monitor a person’s heart beat or respiration, so if their heartbeat increases or if the body starts to shake, the bedside alarm will sound alerting caretakers that a seizure may be occurring.
Is the EMFIT movement monitor device FDA approved and is it available in the United States?
The device is not FDA approved but it is available in the US as a non-medical device for general population use. In Europe it is recognized as a Class 1 medical device (are not intended for use in supporting or sustaining life and may not present a potential unreasonable risk of illness or injury).
What are the limitations of the device? Does it produce false alarms or fail to detect seizure events?
Failure to detect seizures is obviously a major concern. The system, however, appears to be accurate in detecting tonic-clonic ‘grand mal’ seizures. As per the company’s statement, “from the thousands of delivered products so far there have not been any reports of a tonic-clonic seizure that was not detected by the monitor. Clinical trials have also indicated the same results.”
Usually false alarms occur when the bed exit alarm function is in use and the patient gets out of bed to go to the bathroom. This option can be disabled if desired. Other false alarms can occur if an individual is particularly restless at night. A sensitivity control can be adjusted to minimize these false alarms.
What happens if the electricity goes out?
Batteries provide back-up if power goes out. It is designed to be used with 2 AA sized 1.5 Volt batteries which can last about 3-6 months.
What is the cost and do medical insurances cover it?
Medical insurance does not cover the cost which is approximately $600.
How long does it take to deliver?
About 3-4 days. More information is available at the companies website (http://www.emfit.com).
In future editions, we will be discussing other seizure detection and preventative devices such as the Sleep Safe Anti-suffocation Pillow and the Neuropace Responsive Neural Stimulation System as well as some products that are still in early research stages.
Jodi Kanter