Seizure Diaries for Angelman Syndrome

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by Mary Chapman |

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About 90% of Angelman syndrome patients experience seizures, which usually first appear around the age of 2 — possibly before the disease itself has been diagnosed.

Seizure diaries can help you manage, and possibly better treat, your child’s condition.

What is Angelman syndrome?

Angelman syndrome is a complex genetic disorder that affects the nervous system, and leads to physical and intellectual disabilities.

Seizures in Angelman syndrome

Along with symptoms such as movement and balance disorders, seizures are common in Angelman syndrome.  It’s not completely understood how the disease causes seizures, but scientists believe they result from a balance shift toward excessive excitation in nerve cells in the brain.

All types of seizures have been observed in Angelman patients. But the most common are atypical absences, generalized tonic-clonic, atonic, and myoclonic seizures. These can occur at any age and most patients experience multiple seizure types. They are often severe, and in many cases are difficult to control.

What are seizure diaries?

A seizure diary is a record of your child’s seizures, and can help you to monitor things that might trigger them. These may include a spike in body temperature, lack of sleep, tiredness, stress, or skipping medication. If you know the triggers, you may be able to ease your child’s seizures.

A diary can also be of considerable help to your healthcare team and guide your child’s treatment; without a record, a physician has to rely on your memory of seizure activity and possible triggers.

Examples of seizure diaries

There are various versions of seizure diaries. Many physicians’ offices distribute forms or booklets that you can use. Some people keep detailed journals. A newer option is electronic record keeping through apps and other programs.

The Epilepsy Foundation My Seizure Diary app tracks seizures and other symptoms, manages medications and other therapies, recognizes triggers and health events that may affect seizures, and communicates with healthcare providers. Users are able to print reports or send them to healthcare team members electronically.

The Epilepsy Society has an example of a seizure diary that you may print out. Another online seizure diary is at SeizureTracker.com.

In addition, Texting 4 Control is designed for young people with seizures. WebEase, also offered through the Epilepsy Foundation, is an online diary that lets you chart personal health and seizures over time, and encourages good decision-making.

How do I use a seizure diary?

You may use a seizure diary to record the times, dates, and effects of seizures. You may also add details that include information about your child’s healthcare team, the types of seizures they are having, and any medication changes. Finally, you should note other information you think pertinent, such as an illness your child had at the time of a seizure, or, if applicable, menstruation dates.

To build a record of seizures over months, some people keep monthly diaries that include an at-a-glance look at the total number of seizures.

Tips while observing a seizure

When watching a seizure, try to note what happens in each phase of the seizure, writing details down as soon as possible. Some items to include are:

  • Behavior before the seizure
  • Seizure date and time
  • Possible triggers, noting any patterns
  • What happens during the event (like awareness or confusion)
  • Part(s) of the body involved
  • What happened after the seizure (whether the patient was able to remember what happened, for example)
  • How long the seizure lasted

 

Last updated: June 29, 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.