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epilepsy and autism

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kathryn

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does anyone have any advice on explaining epilepsy (tonic-clonic) to asd child? verbal 10 year old but limited comprehension 

Edited on February 23, 2017 - 9:20am

March 16, 2012 - 10:24am

Hi Kathryn,

Many thanks for your post.

As a starting point you may find it useful to speak to Young Epilepsy  - http://www.youngepilepsy.org.uk/ - they have a number of resources as well as an Epilepsy helpline - 01342 831342.

Epilepsy Action also provide support with helpline services - http://www.epilepsy.org.uk/info/support

If you haven't already it maybe useful to incorporate visual supports into the way you explain epilepsy, this way you can tailor it to the child concerned. I have provided a link to some information on visual supports and social stories:

http://www.autism.org.uk/visualsupports

http://www.autism.org.uk/living-with-autism/strategies-and-approaches/social-stories-and-comic-strip-conversations.aspx

You may also want to contact the NAS Autism Helpline to discuss in more detail how to use visual supports with the specific child concerned, you can contact the helpline on - 0808 800 4104

The Epilepsy Society also has a couple of easy read booklets for explaining epilepsy, these can be found at http://shop.epilepsysociety.org.uk/cat/easy-read/14

I hope that this maybe a useful starting point for you.
It would be great to hear how others may have approached this situation, what resources you have used etc...???

Gillian

Network Autism Team

 

AutismAdvocate

July 18, 2015 - 11:29am

I would tell the child that someone's brain has got "over-excited" or "full-up" and they had to expel the energy by dropping to the floor and shaking it all out until they felt better, which was tiring for them all the same.

mariakatosvich

August 30, 2016 - 7:12am

If a parent or guardian suspects that a child or adult is having seizures, it’s important to seek evaluation by a neurologist.

Most likely, the neurologist will order an electroencephalogram (EEG). An EEG is a noninvasive process that involves the placing of electrodes on an individual’s head in order to monitor activity in the brain. By analyzing the brain activity patterns that the EEG measures, the neurologist can determine if someone is having seizures.

Treating epilepsy in individuals with autism follows the same principles as treatment of epilepsy in any person. Typically, the physician selects an anti-epileptic drug based on several considerations such as the type and severity of seizures and their associated EEG patterns.

Anti-epileptic drugs do not cure epilepsy. In most cases, however, they can prevent or minimize seizures. At present, U.S. doctors can choose from more than twenty medications. After starting a medication, it’s important to closely monitor effectiveness and possible side effects. Relatively common side effects include mild fatigue, abdominal discomfort or dizziness. These tend to ease off after the first weeks of use. To minimize side effects, the doctor may start medications at a low dose and slowly increase it. Dosage adjustments are to be expected when taking anti-epileptic medications.

When medications fail to control seizures, physicians and families can discuss other options. These include vagus nerve stimulation, a technique that prevents seizures by sending pulses of electrical energy to the brain through a device that acts like a “pacemaker” for the brain. Another option is the surgical removal of seizure-producing areas of the brain.

Thanks

Head.Nurse

St Joseph Charity Hospital, Slough

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Nathalie Dick

February 21, 2017 - 4:26pm

Epilepsy Action also has some easy read leaflets to explain what epilepsy is, different types of epileptic fits, medicine, and first aid for people who have epileptic fits.  These are all downloadable, or can be viewed online; they can also be listened to.

 

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