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Epilepsy

More than 80% of children with Angelman syndrome have epilepsy with onset typically in the first three years of life. They frequently have mixed seizure disorders ranging from as mild as occasional absence seizures to hundreds of drop attacks per day. Seizures can be life threatening and correct medication is vital in order to control them. Seizures can interfere with learning and can also be linked to certain unusual behaviours.

 

Angelman syndrome & Epilepsy:

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YouTube videos: 

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For more support and in-depth information on Epilepsy, see  Epilepsy New Zealand

Angelman syndrome & seizures

Informative Articles on EEG patterns

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Most (not all) children with Angelman Syndrome have abnormal EEGs (electroencephalograms) and many are prone to significant seizure activity that is often tricky to control in childhood.  They usually demonstrate an abnormal EEG with  a  characteristic pattern of large amplitude slow-spike waves. Image here shows Characteristic Angelman EEG, with Triphasic delta wave activity arrowed.​

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What can you do?

If your child has seizures, it is helpful for the child, the parent, other carers/aides, and the medical professionals involved, if you have a consistent plan of action.  

 

Seizure Management Plan (SMP)

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Why is it important to have a Seizure Management/Action/Response Plan?

 

An SMP is a written document that provides general medical information about the person with epilepsy (including personal identifying information), emergency contacts, details about his or her specific seizures, medicines, and information on what to do if a seizure happens. Your child's GP or neurologist can help you fill this out.

There are several samples of these plans on the internet.

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If your child has epilepsy, this SMP should be on file with teachers and the school nurse’s office (or wherever your child spends time, such as an aftercare program, camp, or with a babysitter. Having a plan readily available will help minimize the impact of seizures for the person with epilepsy, and help others to manage seizures appropriately.

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  • The family plays a central role in your child's seizure management.

  • Your success in managing your child's seizures will depend on being well prepared – from understanding epilepsy and maintaining seizure control, to responding to seizures and managing safety.

  • An SMP can help you organize your child's seizure information and have it available when and where you need it. It can help you know what to do to prevent an emergency, or tell others what to do in emergency situations. You can also adapt these plans to different situations in your child's life.

  • By helping you be prepared, seizures (or the fear of seizures) won’t prevent you from letting your child participate and enjoy their life to the fullest.

log book

Keep a detailed log or a seizure dairy to record unusual behaviors or possible seizure activity. 

This can be a helpful tool to  identify triggers and seizure types, should further investigations be needed. 

video clips

Video clips of your child that record unusual behaviors or possible seizure activity is useful information for a specialist when trying to identify what type of seizures your child is having. 

seizure types

Different seizure types require different treatments and  medication. See below for more info. You can also share questions and concerns with other parents on FB here: 

Angelman Syndrome Seizure Information

POster

Have this poster on display and/or on file for your Seizure Response Plan for carers, support workers, teachers, aides, etc

What are tremors?​

 

Myoclonus describes a symptom and not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Read more here: Myoclonus.  

Epileptic myoclonus occurs as part of an underlying epileptic disorder. Subtypes of epilepsy-induced myoclonus include cortical reflex myoclonus, progressive myoclonus epilepsy, and reticular reflex myoclonus. Each subtype refers to a form of epilepsy that affects different brain regions. These tremors are not the same as seizures and can be extremely difficult to treat. 

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Dysautonomia can also present as tremors. It is an umbrella medical term utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous. Read more on this lesser known condition, here.

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Informative Articles 

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      treatment for people with epilepsy.

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Support groups on Facebook 

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Vitamin Supplements

Vitamin D: Some anti-epileptic drugs (AEDs) can reduce bone density, making bones weaker and more likely to break. To help prevent this, doctors may suggest a bone density scan, and prescribe a vitamin D supplement. Vitamin D helps the body to absorb calcium and build healthy bones. Sunlight is the main source of vitamin D, and most people can store enough to last through the days when there is little sunlight. Vitamin D is also in eggs, oily fish, fish liver oils and foods with added vitamin D, such as some cereals, fat spreads and dairy products.

 

Vitamin B6 : Side effects of taking Keppra include changes in mood or behavior, clumsiness or unsteadiness, or unusual tiredness or weakness. More serious symptoms can include depression and hallucinations. A study reported in "Clinical Epilepsy" in October 2005 found that the addition of vitamin B6 may prevent or reduce some of the psychiatric symptoms associated with Keppra.

CBD oil - cannabidiol

 

Does medical cannabis help seizures?  Evidence from laboratory studies, anecdotal reports, and small clinical studies from a number of years ago suggest that cannabidiol, a non-psychoactive compound of cannabis, could potentially be helpful in controlling seizures. More testing needs to be done to ascertain safety levels. CBD does interact with some other seizure medicines, so this must also be taken into consideration. CBD should not be taken casually as an extra supplement.

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YouTube video: Should we use Cannabis to treat Epilepsy? - AngelmanUK

More on Medical marijuana and epilepsy (Epilepsy Foundation). 

​Understanding CBD

Epilepsy Research in AS

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Due to the high rate of seizures among people who have AS, there is ongoing research on Epilepsy and Angelman Syndrome. Some research articles are listed here:

 

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