Some people with epilepsy can have clusters of seizures which are often called “seizure clusters”. They can be very confusing to recognize. Seizure clusters are seizures that start and stop, but occur in groups one right after another. They are more commonly seen in children with certain epilepsy syndromes such as Lennox Gastaut Syndrome (LGS) and can look different depending on the child. When this happens it's important to count and time the seizures so you have correct information when reporting them to your neurology provider.
You need a plan.
A seizure action plan should be discussed with your neurology provider and family when clusters or long seizures occur. As each child is different, it is difficult to have a standard plan on how to approach seizure clusters. In some situations, emergency seizure medications such as rectal diazepam or intranasal midazolam should be used to stop the cluster if it is out of character for the child. For long seizures (usually lasting over 5 minutes without stopping), an emergency seizure medication should be prescribed. It is important that the correct dose is given and updated as the child grows. Please ask your neurology provider if a new prescription is needed as growth and weight increases. For those patients at risk or who have had long seizures or seizure clusters in the past, a seizure action plan and an emergency seizure treatment can be very useful.
Is my child's epilepsy worsening?
No. It is important to note that having seizure clusters does not mean the child’s epilepsy is worsening. Seizures can change with time and clustering can come and go. Communication about what your child’s seizures look like, how long they lasts, how he/she does before, during and after seizures, and how often they are occurring are all very important to share with your neurology provider. Also, it helps to know if a child’s seizures have a pattern of occurring at certain times of the day.
You have to take your medicine.
It's very important to have your child take their prescribed seizure medications. The biggest risk for producing a long seizure or seizure clusters is when people do not take or forget to take their anti-seizure medication. Also, some people have triggers for their seizures. If these triggers can be avoided, the chance of having breakthrough seizures is less. The biggest trigger other than not taking medications is when people do not get the proper amount of sleep each night. It is recommended that children get 8 to-12 hours of sleep each night depending on the age of the child.
In summary, it is important to be informed about all seizure types that your child has. It is important to make sure your child’s neurology provider is aware of all occurring seizure types and also the situation around them such as missing medications. This will allow for better care for the child with epilepsy.
To learn more about seizures and epilepsy, listen to our latest PediaCast episode.
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