Purple Day 2019 – Helping Children With Epilepsy Live Better

Epilepsy is one of the most common neurological conditions worldwide; with around 600,000 people in the UK being diagnosed with epilepsy; 112,000 of these being children and young people.

Purple Day (26th March 2019) exists to promote international awareness, education and conversation about the condition. Epilepsy Action is calling for people to support Purple Day, and start talking about the effects that epilepsy has upon those living with the condition, and their family and friends.

One in every 240 children aged 16 and under in the UK will be diagnosed with epilepsy. Some of these children will be babies, some will be starting school and some will be teenagers. Every year, around 40-80 of these children will die because of their epilepsy.

Epilepsy is a condition that affects the brain. A seizure happens when there is a sudden burst of intense electrical activity in the brain. There are many different types of epileptic seizures, and these can affect people differently such as; having strange sensations, movements that can’t be controlled and falling to the floor and shaking.

Children with epilepsy also have a one in 4,500 risk of ‘Sudden Unexpected Death in Epilepsy’ (SUDEP), which is when a child with epilepsy dies suddenly and no reason can be found.

[wp_ad_camp_”]

Epilepsy Action chief executive Philip Lee said:“Finding out you have epilepsy is scary at any age. For young children, it can be terrifying. This Purple Day, Epilepsy Action wants to help children and their families to learn more about epilepsy, let them know they’re not alone and give them the confidence to deal with their diagnosis. We also know that it can be very hard for children to put into words their epilepsy and how it affects them.”

Picture: Ian Hodgkinson / Picture It Homefields Primary school in Parkway Chellaston has won the Edward award from Epilepsy Action in recognition for their work supporting seven year old Amrit Shergill. Pictured from left year 1+2 teacher Gail Heald, mum Gurvinder Shergill, Amrit Shergill, seven, with Will Butterworth from Epilepsy Action

Children with epilepsy are consistently found to be behind their peers academically, and to report a reduced quality of life compared to that of their peers. Supporting Purple Day can help explain epilepsy to children in a way that they understand, and also get more resources to teaching staff meaning children with epilepsy can be better supported to succeed in school.

Epilepsy Action has created a short video with groups of children, some living with epilepsy, talking through what the condition is and how it affects their lives.

<

Rachael King, mum to Jenson, William and Darcie who took part in the filming said:“I think it’s really important for the children to talk about their epilepsy – not only to raise awareness of the condition and what to do if they have a seizure but also so they can share their experiences in a positive way and be proud of how strong they are. I don’t want their epilepsy to ever hold them back through childhood or anything they want to do in life. By sharing their journey from an early age it will hopefully make more people aware of the condition and get support from friends – putting an end to any misconceptions and prejudice about the condition.”

For more information visit https://www.epilepsy.org.uk/

Epilepsy – what are the signs and symptoms to look out for?




Epilepsy

Epilepsy




The main symptom of epilepsy is repeated seizures. These are sudden bursts of electrical activity in the brain that temporarily affect how it works.

Seizures can affect people in different ways, depending on which part of the brain is involved.

Some seizures cause the body to jerk and shake (a “fit”), while others cause problems like loss of awareness or unusual sensations. They typically pass in a few seconds or minutes.

Seizures can occur when you’re awake or asleep. Sometimes they can be triggered by something, such as feeling very tired.

 

Types of seizures

Simple partial (focal) seizures or ‘auras’

A simple partial seizure can cause:

a general strange feeling that’s hard to describe

a “rising” feeling in your tummy – like the sensation in your stomach when on a fairground ride

a feeling that events have happened before (déjà vu)

unusual smells or tastes

tingling in your arms and legs

an intense feeling of fear or joy

stiffness or twitching in part of your body, such as an arm or hand

You remain awake and aware while this happens.

These seizures are sometimes known as “warnings” or “auras” because they can be a sign that another type of seizure is about to happen.

Complex partial (focal) seizures

During a complex partial seizure, you lose your sense of awareness and make random body movements, such as:

smacking your lips

rubbing your hands

making random noises

moving your arms around

picking at clothes or fiddling with objects

chewing or swallowing

You won’t be able to respond to anyone else during the seizure and you won’t have any memory of it.

Tonic-clonic seizures

A tonic-clonic seizure, previously known as a “grand mal”, is what most people think of as a typical epileptic fit.




They happen in two stages – an initial “tonic” stage, shortly followed by a second “clonic” stage:

tonic stage – you lose consciousness, your body goes stiff, and you may fall to the floor

clonic stage – your limbs jerk about, you may lose control of your bladder or bowel, you may bite your tongue or the inside of your cheek, and you might have difficulty breathing

The seizure normally stops after a few minutes, but some last longer. Afterwards, you may have a headache or difficulty remembering what happened and feel tired or confused.

Absences

An absence seizure, which used to be called a “petit mal”, is where you lose awareness of your surroundings for a short time. They mainly affect children, but can happen at any age.

During an absence seizure, a person may:

stare blankly into space

look like they're "daydreaming"

flutter their eyes

make slight jerking movements of their body or limbs

The seizures usually only last up to 15 seconds and you won't be able to remember them. They can happen several times a day.

Myoclonic seizures

A myoclonic seizure is where some or all of your body suddenly twitches or jerks, like you've had an electric shock. They often happen soon after waking up.

Myoclonic seizures usually only last a fraction of a second, but several can sometimes occur in a short space of time. You normally remain awake during them.

Clonic seizures

Clonic seizures cause the body to shake and jerk like a tonic-clonic seizure, but you don't go stiff at the start.

They typically last a few minutes and you might lose consciousness.

Tonic seizures

Tonic seizures cause all your muscles to suddenly become stiff, like the first stage of a tonic-clonic seizure.

This might mean you lose balance and fall over.

Atonic seizures

Atonic seizures cause all your muscles to suddenly relax, so you may fall to the ground.

They tend to be very brief and you'll usually be able to get up again straight away.

Status epilepticus

Status epilepticus is the name for any seizure that lasts a long time, or a series of seizures where the person doesn't regain consciousness in between.

It's a medical emergency and needs to be treated as soon as possible.

You can be trained to treat it if you look after someone with epilepsy. If you haven't had any training, call 999 for an ambulance immediately if someone has a seizure that hasn't stopped after five minutes.

Seizure triggers

For many people with epilepsy, seizures seem to happen randomly.

But sometimes they can have a trigger, such as:

stress

a lack of sleep

waking up

drinking alcohol

some medications and illegal drugs

in women, monthly periods

flashing lights (this is an uncommon trigger)

Keeping a diary of when you have seizures and what happened before them can help you identify and avoid some possible triggers.

What to do if someone has a seizure (fit)




Epilepsy

Epilepsy




 

If you see someone having a seizure or fit, there are some simple things you can do to help. Use this article to find out what they are, and when to call an ambulance.

It might be scary to see someone having a seizure, but don’t panic. “Try to comfort them and make sure they’re not hurting themselves,” says Dr Chris Clough, consultant neurologist (brain specialist) at King’s College Hospital, London.

“If they’re having a tonic-clonic seizure, they may be trapped behind something or kicking against something.” If you are with someone who is having a tonic-clonic seizure (fit):

move them away from anything that could cause injury – such as a busy road or hot cooker

cushion their head if they’re on the ground

loosen any tight clothing around their neck – such as a collar or tie, to aid breathing

when their convulsions stop, turn them so that they’re lying on their side

stay with them and talk to them calmly until they have recovered

note the time the seizure starts and finishes

Don’t put anything in the person’s mouth, including your fingers. They may bite their tongue, but this will heal. Putting an object in their mouth could cause more damage.

As the person is coming round, they may be confused, so try to comfort them.

Do you need to call an ambulance?

You don’t necessarily have to call an ambulance, because people with epilepsy don’t need to go to hospital every time they have a seizure.

“I have patients who have ended up in all parts of town because they’ve had a seizure and were taken to hospital,” says Dr Clough.

Some people with epilepsy wear a special bracelet or carry a card to let medical professionals and anyone witnessing a seizure know that they have epilepsy. “If they know they have epilepsy, they might just prefer to get on with their day.”




However, you should dial 999 if:

it’s the first time someone has had a seizure

the seizure lasts for more than five minutes

the person doesn’t regain full consciousness, or has a series of seizures without regaining consciousness

Remember what happens

Make a note of what happens during the seizure, as this may be useful for the person or their doctor.

Be aware of what the person does during the seizure. Make a note of what they’re like afterwards (e.g. sleepy, confused, or aggressive), and record how long the seizure lasts.

The following information may be helpful:

Where was the person?

What were they doing?

Did the person mention any unusual sensations, such as an odd smell or taste?

Did you notice any mood change, such as excitement, anxiety or anger?

What brought your attention to the seizure? Was it a noise, such as the person falling over, or body movements, such as their eyes rolling or head turning?

Did the seizure occur without warning?

Was there any loss of consciousness or altered awareness?

Did the person’s colour change? For example, did it become pale, flushed or blue? If so, where – the face, lips or hands?

Did any parts of the body stiffen, jerk or twitch? If so, which parts were affected?

Did the person’s breathing change?

Did they perform any actions, such as mumble, wander about or fumble with clothing?

How long did the seizure last?

Was the person incontinent (could not control their bladder or bowels)?

Did they bite their tongue?

How were they after the seizure?

Did they need to sleep? If so, for how long?

Autism and epilepsy – A guide to managing epilepsy in autism


 

Autism and epilepsy A guide to managing epilepsy in autism

Autism and epilepsy A guide to managing epilepsy in autism

Autism and epilepsy A guide to managing epilepsy in autism





On Friday Autistica (one of the UK’s premier autism research providers) asked us to share a recent leaflet called “Autism and epilepsy A guide to managing epilepsy in autism”.

First rate overview of the subject.  Please feel free to share with other members of the autism community!

To sign up for more leaflets from Autistica please click here.

Autism and epilepsy A guide to managing epilepsy in autism

Autism and epilepsy A guide to managing epilepsy in autism




Autism and epilepsy A guide to managing epilepsy in autism

Autism and epilepsy A guide to managing epilepsy in autism