Thursday, March 26, 2015

Purple Day for Epilepsy

http://www.purpleday.org/


Every year, on March 26th, people around the world wear purple to show their support for those with epilepsy and to raise awareness about the condition.

Approximately 50% of children with cerebral palsy have seizures - episodes in which abnormal nerve activity disturbs the functioning of the brain. We don't typically say that Brennen has epilepsy, but that he has a seizure disorder along with cerebral palsy. Seizures are so common among children with cerebral palsy because brain injuries provide focus for abnormal nerve impulses to occur. Children with quadriplegia (like Brennen) or hemiplegia are most likely to have seizures.

Brennen has been having seizures for quite a few years, and though we have gotten used to them, it is never easy to watch your child go through something so traumatic. Brennen's seizures are usually short, lasting just a minute or two, and he is very sleepy afterwards. We have tried a number of different medications to try and control his seizures. Many have had side effects that we didn't like, and some just did not work for him. It is a bit of trial and error to get the proper therapeutic dose, but we seem to have found the right prescription for Brennen, and his seizures have been less frequent and less severe. I used to get texts from his teacher at school saying, "Brennen just had a little seizure. He is doing fine now, in someone's arms having a cuddle and a rest." I haven't gotten a message like that in a few months. (That being said, he had a small seizure yesterday at breakfast, and missed school because he slept the whole morning). Brennen is certainly not seizure-free, and probably never will be. We have accepted this as our 'normal', and we try to make him as comfortable and as content as possible. 

Brennen is followed closely by a pediatric neurologist, and has EEGs (Electroencephalograms) regularly to measure his brain wave patterns. EEGs are painless and non-invasive, and typically take about an hour. They also usually videotape his EEGs to try and record a clinical seizure on tape.


Brennen has only ever had one seizure that lasted longer than five minutes. It was not stopping on its own, so I had to administer emergency medication (Ativan), which we keep on hand "just in case", and we took him directly to the hospital. He had come around by the time we got there, so they just checked his vitals, monitored him for a couple of hours, and sent us home.

As scary as it is, anyone can have a seizure at any time. One in every ten people will have a seizure at some point in their life, and over 10,000 people in Newfoundland & Labrador have epilepsy right now.

A seizure may appear as a brief stare, unusual movements of the body, a change of awareness, or body convulsions.

Seizure First Aid


First Aid for seizures involves responding in ways that can keep the person safe until the seizure stops by itself.

Here are a few things you can do to help someone who is having a generalized tonic-clonic (grand mal) seizure:

  • Keep calm and reassure other people who may be nearby.
  • Prevent injury by clearing the area around the person of anything hard or sharp.
  • Ease the person to the floor and put something soft and flat, like a folded jacket, under his head.
  • Remove eyeglasses and loosen ties or anything around the neck that may make breathing difficult.
  • Time the seizure with your watch. If the seizure continues for longer than five minutes without signs of slowing down or if a person has trouble breathing afterwards, appears to be injured, in pain, or recovery is unusual in some way, call 911.
  • Do not hold the person down or try to stop his movements.
  • Contrary to popular belief, it is not true that a person having a seizure can swallow his tongue. Do not put anything in the person’s mouth. Efforts to hold the tongue down can injure the teeth or jaw.
  • Turn the person gently onto one side. This will help keep the airway clear.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally and he is fully awake.
  • Do not offer the person water or food until fully alert
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home without help.

Here are some things you can do to help someone who is having a seizure that appears as blank staring, loss of awareness, and/or involuntary blinking, chewing, or other facial movements.

  • Stay calm and speak reassuringly.
  • Guide him away from dangers.
  • Block access to hazards, but don’t restrain the person.
  • If he is agitated, stay a distance away, but close enough to protect him until full awareness has returned.

 

Consider a seizure an emergency and call 911 if any of the following occurs:

  • The seizure lasts longer than five minutes.
  • The person has another seizure soon after the first one.
  • The person cannot be awakened after the seizure activity has stopped.
  • The person became injured during the seizure.
  • The person becomes aggressive.
  • The seizure occurs in water.
  • The person has a health condition like diabetes or heart disease, or is pregnant.

    On March 26th, wear purple in support of all people who live with epilepsy.
    Help eliminate the stigma and fear associated with epilepsy and brain trauma!


    The Canadian Epilepsy Alliance has a wonderful new website with lots of information on epilepsy and seizure disorders. 

    Epilepsy Newfoundland & Labrador also offers a range of programs and services to meet your needs concerning all aspects of living with epilepsy.

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