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Your child’s primary physician or complex care clinician can assess for problems or conditions that worsen seizures. A neurologist and epileptologist can recommend medications and interventions to improve problems that can look similar to seizures.
Seizures
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A seizure occurs when a sudden electrical signal interferes with normal signals between nerve cells in the brain. Many, but not all, children with SNI will experience seizures. Common behaviors indicating a seizure include rhythmic jerking movements of the arms and legs, stiffening of the body, not responding for short periods of time to things that would normally get a response, staring, rapid eye-blinking and/or eye-rolling. Seizure activity may worsen or change in its presentation as your child ages and/or if impairment of the brain worsens. In some cases, medication can control seizures, but for many children with SNI seizure activity will continue even with medication.
ESP Seizure Behaviors
Seizures present in many different ways, which can make it hard for caregivers to understand what to watch for. In general, seizures are events that are not interruptible by touching, moving or distracting the child, and happen the same way each time they occur. Common seizure behaviors include sudden stiffening or jerking of the limbs, the head bending forward as a repeated spasm, repeated mouth or tongue movement, turning the head or eyes to one side, eyelid fluttering or staring. Let the medical team know if you see these or other unusual, repeated movements.
Some seizure-like events will not actually be seizures. The medical team can investigate what else might be causing these events. They will consider other problems related to the brain and nerves, such as spasticity and dystonia, and look for causes of irritability and pain that can make a child become tense and move in a seizure-like manner.
Assessing Seizures
Seizure management is complex and is guided by good, though imperfect, science. It is difficult to know for certain what treatment will be effective for a specific individual. A neurologist may initially assess seizure activity by asking you to describe what you have seen. A videotape of your child during what appears to be a seizure can be a helpful tool for assessing seizure activity. It can also be helpful to keep a seizure diary or to use a seizure-tracking app to record data for the team about what is happening and when it happens.
The neurologist may also assess seizure activity by using a test to measure electrical activity of the brain. The electroencephalogram (EEG) is one such test. Small round discs connected to wires (leads) are pasted to the scalp. The leads will not cause pain, but the process of applying them can be long and stressful for a child who does not understand the process. The test can take 60-90 minutes. Sometimes a longer EEG, commonly called a continuous EEG (cEEG) or Long Term Monitoring (LTM) in an Epilepsy Monitoring Unit (EMU), will be suggested. These tests include video monitoring to record your child’s movements and are conducted in a hospital setting. It is common for the tests to take at least 24 hours, but it can take up to a week depending on what data is needed.
Seizure Management
Anti-seizure medications (anticonvulsants) are used to manage seizures. A neurologist will guide decisions about the medication and dosing based on the type of seizure, any potential side effects from the medications, and the age and weight of your child. In some cases, blood tests will be needed to measure the level of the medication in the blood and monitor for side effects over time.
Treatment to manage, or prevent, seizures is very important because people who experience them are at greater risk for serious complications. One of these is SUDEP, the Sudden, Unexpected Death in a person diagnosed with epilepsy, with no other cause of death apparent (such as heart rhythm problem or breathing problem). SUDEP typically affects 1 in 4,500 children with epilepsy; in other words, 99.9% of children will not be affected by SUDEP. Not all seizure types have the same risk. Your child’s neurologist can help you understand what this means for your child.
The goal of treatment is to stop seizures from occurring and to avoid medication side effects. However, it is often the case that children with SNI will not be seizure-free, even with medication. Seizure medications may increase drowsiness in your child, so the goal is to find an acceptable balance between your child’s alertness and the degree of seizure control. Your child’s growth or weight gain, onset of puberty and/or menstruation all can affect seizures. It can take a while to find this balance, and the decisions may change over time. Keeping track of changes will help the medical team adjust your child’s treatment.
Seizure treatment also includes identifying and managing other issues that can worsen seizures. These issues include any new illness such as a viral or bladder infection, problems with medications, or significant changes in sleep. An EEG may have shown similar-looking events to not be a seizure; chronic problems such as constipation and pain can be a trigger for such events.
Additional treatments may also be considered:
- Ketogenic diet: a highly controlled, medically managed diet that severely restricts protein and carbohydrate intake and gives most calories through fats. While there are popular versions of this diet in the community, this version is challenging to manage and should only be initiated and managed by the clinical team, including a dietician.
- Vagus nerve stimulator (VNS): a generator that is surgically implanted below the skin on the left front chest wall, and is connected through a wire to the vagus nerve, sending regular small pulses of electrical energy through the vagus nerve to the brain. This option can be discussed with a neurologist and neurosurgeon. Additional computerized implants may be proposed if seizures are difficult to control.
ESP Convulsive seizures are stressful and difficult to watch, while more subtle types of seizures may be confusing and hard to recognize. Seizures often begin when a child with SNI is very young. You may worry: Are the seizures painful? Will they cause more damage to the brain? Will they affect development? Will the seizures return? It will take time to understand what experiencing seizures might mean for your child. Trial and error of different medications or treatments may be needed to find an effective approach to lessening seizure frequency and maximizing control over them. A change in your child’s baseline may also bring changes in seizure activity, and you may ask yourself some of these same questions again. Identify and share your worries with the medical team. Seek answers and support so that you can have confidence that the best treatment is being used to help your child.
Treatment can provide benefits even if it does not stop all seizures. While many parents understandably wish to see their child be seizure-free, it may be necessary to consider what is tolerable seizure activity, and what side effects from seizure medication are tolerable. Successful seizure management also may change during the different stages of your child’s life. Some additional definitions of “successful” seizure management at different points may be:
- A decrease in seizure frequency or severity
- Your child’s baseline of seizure frequency allows them to have enjoyable days without being more heavily sedated
- Treatment shortens seizures
- Treatment reduces the post-seizure recovery time, so that your child can resume daily activities
- You are able to treat longer seizures at home, avoiding a hospital visit
- Your team has been able to work with your child’s school or residence to devise a care plan that may limit burdensome emergency department visits
