The Angelman Network is a

Registered Charitable Trust based in New Zealand

CC46746.

Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites. Always contact your own medical practitioner for any medical advice.

©2018 by The Angelman Network. 

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.

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.)

Read more on AS and Epilepsy, here

A very recent case series from the Angelman Syndrome Clinic at Massachusetts General Hospital Elias A. Shaaya, Olivia R. Grocott, Olivia Laing, Ronald L. Thibert : Seizure treatment in Angelman syndrome (Download the pdf here )

New YouTube videos

2017 ASF Family Conference: Seizures in Angelman Syndrome -  by Ronald Thibert, DO, MsPH

Should we use Cannabis to treat Epilepsy? - AngelmanUK

What are the alternative treatments for Epilepsy? - AngelmanUK

What can you do?

Seizure Response Plan/Epilepsy Management Plan

Why is it important to have a Seizure Response Plan?.

 

A seizure response plan 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.

 

Download a template plan here, and/or here

If your child has epilepsy, this seizure response plan 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.

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

  • Your success in managing your child's seizures/epilepsy will depend

       on being prepared to tackle whatever comes your way – from understanding

       epilepsy and maintaining seizure control, to responding to seizures and

       managing safety.

  • A Seizure Response Plan 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.

Support groups on Facebook 

      around seizures, AEDs, CBD oil, diet management, 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. 

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.

Informative Articles 

      treatment for people with epilepsy.

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

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.

Watch new Youtube videoShould we use Cannabis to treat Epilepsy? - AngelmanUK.

Read more on Medical marijuana and epilepsy (Epilepsy Foundation). 

Understanding CBD

1. Log Book 

 

Keep a detailed log to record unusual behaviors or possible seizure activity. A sample template for a seizure log/journal can be found here

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

2. Take 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. 

3. Seizure Types

Different seizure types require different treatments and    medication. Get to know about Seizure Types,

hereYou can share questions, concerns, observations with other parents on FB here: Angelman Syndrome Seizure Information

4. Download and print: 

First aid posters

Having these on display and on file is helpful as part of your seizure response 

plan for your carers, support workers, teachers, aides, etc.