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Non-convulsive status epilepticus (NCSE)
There are two types of
status epilepticus. One is the status epilepticus that most
people think about, convulsive status
epilepticus, in which the patient is having a
prolonged tonic-clonic (convulsive) seizures which would be
treated as a medical emergency. A separate type, non-convulsive
status epilepticus (formerly referred to as "minor motor
status"), is an episode when a patient has prolonged
absence and
atypical absence events, lasting a half-hour, an
hour, or days. This non-convulsive status (NCSE) is not life
threatening or brain damaging but should be recognised and
treated.
Fortunately, convulsive
status epilepticus is not a reported seizure type associated
with MAE. There is, however, a peculiar and rare type of
non-convulsive status epilepticus common in MAE patients which
may continue for hours or days if not interrupted by adequate
measures without major consequences. NCSE is debilitating for
the child and awful to witness as a parent but be reassured that
it is not harmful.
Although many myths and
fears still persist about status epilepticus and non-convulsive
status-epilepticus, with early recognition and appropriate
treatment, children who experience episodes of status should return
to their previous function and have no residual effects.
There is no evidence that
spike-wave stupor seen with NCSE causes permanent damage to the
brain, even when it goes on for hours or days. However it
clearly disrupts the child's level of function.
What happens?
By definition, NCSE is a
long-lasting on/off
absence seizure.
Whereas an absence seizure lasts under a minute, episodes of
NCSE can continue for a long time – thirty minutes, an hour, a
day or longer. Just like other generalised seizures, NCSE can
start suddenly and without warning but the shift in
consciousness may be so subtle that it may be very difficult for
an observer to detect.
As is the case with all
generalised seizures, the child doesn't know what is happening
during episodes of NCSE. Even though the child may be somewhat
responsive and aware of the surroundings, he/she may only
recall "snippets" of what happened or nothing at all. There is a
lot of subclinical seizure activity
occurring in the brain, constantly interrupting the child's
ability to process and function. As one child
has described, things feel "fuzzy in the head".
With
non-convulsive status in MAE, the typical clinical
picture is of a drowsy, stuporous (ataxic or as if in a
drunk state) child with subtle, barely detectable, myoclonic
seizures often involving the face or extremities such as
fingers. The child is unresponsive, drools, has slurred speech
or is non-verbal, and even immobile. This condition is termed by
MAE parents as "full-blown NCSE".
If this situation continues for a long period it can be serious
because it usually means that the child is immobile and
non-verbal but, more importantly, unable to swallow. In this
state it is very difficult to keep fluids up regularly and take
medication so if the NCSE cannot be stopped by adequate
measures, hospitalisation may be required. Fortunately, such a
deterioration of condition in MAE is rare.
Non-convulsive status in
MAE can also be subtle and very difficult to detect without an
EEG. Only a very careful history of an unexplained change in
function or behaviour can lead a treating doctor to suspect NCSE and
to obtain an EEG. When dealing with MAE, parents, carers and
treating doctors should maintain a high index of suspicion that
such changes in behaviour may be an episode of NCSE especially
if these events occur at a regular time every day. This milder
condition is termed by MAE parents as "high-functioning
NCSE". Even "with a head full of seizures", in
this milder state of NCSE, parents are constantly amazed at what
the child is capable of doing. Parents have reported being able to bring
their child out of this state
–
snap them out of it
–
by guiding them to an engaging or stimulating activity (eg,
playing Nintendo).
During an episode of
"high-functioning NCSE", as a parent you might think that something
is not quite right but not be able to put your finger on it. You
may notice behaviour that is out of character. These are some of
the behaviours you might observe:
You may suspect NCSE but
the only way to know with certainty is to obtain an EEG during
such an episode.
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Read
about
Jamil's experience.
u
See
also Learning & Behaviour
u
See
also
Seizures - Atypical absence seizures
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See
also Treating
MAE - Emergencies
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See
also
Safety -
Educating
your caregiver
What to do
Don't
- Restrain the child
- Act in a way that
could frighten the child, eg abrupt movements or shouting at
them
- Assume the child is aware of what is happening or what has happened
Call an
ambulance if....
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