Seizure Monitors for Angelman Syndrome

Seizure Monitors for Angelman Syndrome
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Seizures are very common in people with Angelman syndrome. About 90% of patients experience seizures, which generally appear around age 2.

Parenting a child with Angelman syndrome can be very stressful. Many worry about their child having a seizure during the night, or during playtime when they may be less supervised.

Seizure monitors are one way to track seizure activity. Your child’s care team can help you choose a device that will be best for your child.

What are seizure monitors?

Seizure monitors are small devices to alert caregivers that a person is having a seizure. There are many different types of seizure monitors, not all of which are appropriate for small children. The devices may measure heart rate and motion. Some monitors are wearable, others are placed on a patient’s bed to detect movement.

Angelman syndrome can cause several different types of seizures. It’s important to choose a monitor able to detect the type of seizure your child experiences. In particular, atonic seizures and absence seizures may not be detected by monitors that rely on movement, since these seizures often do not cause abnormal movement. Tonic-clonic seizures, simple focal motor seizures, and myoclonic seizures all involve muscle movement that should be detectable by seizure monitors.

Types of seizure alert systems

Here are some types of seizure alert systems (listed without any recommendation). Do note that all systems may not be available in all areas, and new technologies become available all the time.

Remember, it’s important before choosing any seizure alert system to talk with your child’s healthcare team about the type of system that would be best for your child.

There are also wearable monitors that can alert caregivers if the child falls. If your child is prone to wandering, a GPS tracking device may be helpful in keeping track of their location.

Many parents also use baby monitors to keep an eye on their child.

How to choose between different types of seizure monitors

Every seizure alert system has its pros and cons. Before buying a seizure monitor, you should consider the following factors and, again, discuss with your physician which device would be best for your child.

  • What type of seizures does it detect?
  • When would do I need the monitor to work (i.e., when my child is awake, or while asleep, or both)?
  • How does the device detect seizures? Is it motion only, or does it also monitor heart rate and sound?
  • How sensitive is the device? What is the likelihood of false alarms?
  • Who will get the alert if the child has a seizure? Will you be close by, or will a caregiver or teacher be closer?
  • How much does the device cost, and will my insurance cover the cost?

Other safety devices

Besides seizure monitors, there are other safety devices that you may want to discuss with your child’s physician. Many children with seizures wear a helmet to protect their heads during a seizure.

Anti-suffocation pillows are pillows with large air channels so that children do not suffocate if they end up face down during a nighttime seizure. This type of pillow may help prevent SUDEP (sudden unexpected death in epilepsy).

Seizure alert dogs are trained to detect an oncoming seizure, and to warn either the patient or the patient’s caregiver so that they have time to lie down or leave a crowded area.

 

Last updated: July 6, 2020

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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