Convulsive status epilepticus may be defined as a tonic-clonic (or clonic) seizure lasting longer than 20 minutes or repeated tonic-clonic (or clonic) seizures without recovery of consciousness. The term convulsive status epilepticus has now become quite widely adopted. However, I am of the opinion that this terminology has serious shortcomings because it is too narrow. If a patient continues to convulse for 20 minutes or longer, this is clearly a medical emergency, but if a patient is unconscious as a result of seizure activity of any type, for 20 minutes or longer, this constitutes a medical emergency. Rarely, tonic status epilepticus may occur with no clonic phase. I have seen this in one of my patients; the condition failed to respond to intravenous benzodiazepines, but it eventually responded to intravenous clormethiazole with a rapid return to consciousness. Some patients also seem to have prolonged atonic states in association with seizures. Whether these are ictal or postictal states may be difficult to determine from the history alone. These patients certainly need urgent medical assessment and may require urgent medical treatment.
The best approach is probably the simplest one. If any patient is unconscious for a prolonged period, this should be viewed as a medical emergency. If the unconsciousness is considered to be a direct result of the epilepsy and not, for example, the result of a head injury sustained in a seizure or another medical condition, then emergency antiepileptic treatment should be given. The other types of status epilepticus, such as complex partial seizure status epilepticus or simple partial seizure status epilepticus, in which the individual is not unconscious, certainly warrant treatment, but the situation is less urgent. There are reports of focal brain damage being associated with, and probably resulting from, prolonged focal seizure activity, but the duration of this activity has usually been days rather than minutes or hours.1718 In the remainder of this section the term status epilepticus will only be used to denote the situations in which the patient remains unconscious as a direct result of the seizure activity.
The treatment of status epilepticus has been the subject of a number of reviews and, notably, an important book.19 Status epilepticus appears to be more likely in people with ID.1 Although there is debate about how frequently status epilepticus causes permanent brain damage,20 it certainly does so in some cases. Because of this, the view of many clinicians is that it should always be treated promptly so as not to put the patient at risk of permanent brain damage. There is some evidence to suggest that the more promptly status epilepticus is treated, the more likely it is to respond successfully to treatment.21,22 This implies that a judgment needs to be made about when the patient has continued in a seizure for long enough for emergency treatment to be warranted. The usual criterion is that if the individual remains in a seizure for five minutes or longer then urgent treatment should be given. However, the care plan should be tailored to the seizure history. For example, if a patient is known always to go into status epilepticus if the seizure lasts longer than one or two minutes, then the emergency treatment might be given at that stage. If, on the other hand, a patient who is known to go into status epilepticus, frequently has seizures lasting six minutes, which then usually resolve without treatment, as was the case for one of my patients, a different care plan would be indicated. In this case it would be appropriate to wait for six minutes before administering the emergency treatment, so as to avoid unnecessary treatment, but then to intervene promptly if the seizure were continuing.
Because transfer to hospital is typically likely to take at least 20 minutes, pre-hospital treatment is usually appropriate. For individuals who are known to go into status epilepticus, the parents/caregivers should be trained in the emergency treatment of this condition. The treatments that can be administered by nonmedical personnel include rectal diazepam, rectal paraldehyde, intranasal midazolam, or buccal midazolam. These treatments will be discussed in turn.
Generally it is good practice to arrange for the patient to be seen by a doctor or to be taken to an emergency department of a hospital if out-of-hospital treatment for status epilepticus has been required. However, there are exceptions. If the car-egivers are experienced, confident, and competent, having previously managed this situation for the patient, the need to involve a doctor may be left to their discretion. These general comments apply regardless of the type of out-of-hospital emergency treatment given, whether it is rectal diazepam or one of the other options discussed in this section. Out-of-hospital treatment should only be administered by individuals who have been properly trained and should only be administered to patients according to a clear, individualized emergency care plan, with consent/agreement from the patient, parent, or other person/agency responsible for the patient. For example, if the child is in the care of the social services department, the written approval of that department would be required. If the person administering the emergency treatment is a member of staff and not the parent, then there is a strong argument for insisting that they not only have the necessary training but that they are also certified as being approved to administer the treatment by their employer. No nonmedical personnel should be expected to administer emergency medication unless they are willing to do so, properly trained, competent and confident with regard to both the procedure and the situation.
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