According to the Epilepsy Foundation, there are several forms of status epilepticus, which is defined as "a seizure that lasts too long or when seizures occur too close together and the person doesn't recover between seizures." There is the non-convulsive form of status epilepticus and then there is the convulsive form. Again, the Epilepsy Foundation says, that the latter "requires emergency treatment by trained medical personnel in a hospital setting and it can be life-threatening."
The problem with proper treatment is that many patients or families do not quite know what is meant by "a seizure that lasts too long." This is not surprising because the last few decades have seen many changes in opinion about the typical length of a status epilepticus seizure. In earlier years, a seizure had to last 20 minutes or longer before getting the label. Today, any seizure lasting more than 5 minutes is deemed a status epilepticus seizure.
The longer any sort of seizure goes on without stopping, the less likely it is to stop without intervention with medical help and medication. It is important to remember that the longer a seizure occurs, the more likely the risk of permanent harm and even death. Thus, anyone at risk for status epilepticus seizures, and particularly parents of infants with epilepsy, must learn to identify long seizures in order to get treatment immediately.
Challenges in Identification
The following guidelines can be applied to the identification of a status epilepticus seizure:
A seizure is an emergency situation when it lasts for more than five minutes, particularly if it is a grand mal (tonic-clonic) seizure that occurs repeatedly. Unfortunately, the post-ictal period of such seizures can make it very difficult for parents or caregivers to easily recognize just when a seizure actually began and/or ended.
- Active tonic-clonic seizure has lasted more than five minutes; OR
- There is a second bout of seizure activity without any regaining of consciousness: OR
- This cycle has seemed to be occurring for 20 to 30 minutes or more (even if symptoms are not pronounce and a bit vague)
If any of these apply, it is a good idea for a parent or caregiver to get the child to a hospital setting and/or call for emergency treatment and support.
What is it that medical teams will do? The AES (American Epileptic Society) released some revised treatment guidelines for convulsive status epilepticus in children in early 2016. In that report, they noted that only three percent of children suffering such seizures perish each year, while around 30% of adults die from them. Though their guidelines were specifically created with children in mind, they apply to all ages and use a proprietary treatment algorithm broken out into three distinct "phases."
Quite extensive, but it can be summarized as:
Phase One - Stabilization - The goal is for any first responders, paramedics or hospital staff to ensure the patient is breathing and then assess oxygen while also timing seizures. Blood glucose should be tested and (if possible) collection of blood for electrolyte, hematological, toxicological and drug assessment is next. ECG monitoring should also begin during this phase. This phase is to last from one to five minutes at the most. If the seizure activity does not halt, then the next phase begins.
Phase Two - Initial Therapy - This phase uses one of the drug protocols recommended by the AES, including benzodiazepine, intravenous phenobarbital, rectal diazepam or intranasal midazolam. If this fails to halt the seizures activity, the medial team is to give a single dose of IV fosphenytoin, valproic acid or levetiracetam. If this does not halt seizures, then the third phase begins.
Phase Three - At this point, seizure activity will have been occurring for 30 minutes and the patient will be treated with a repeat of phase two treatment or anesthetic doses of Propofol, pentobarbital, thiopental or midazolam.
Medical experts appreciate the severity of status epilepticus and have developed this protocol to mitigate damage and reduce health risks.