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The horror… I mean “reality”… of epilepsy

15 Sep

In our bid to treat everyone as equals, have we failed to realise that we are not equal, and that there are some very good reasons for this…??

Most people, including school teachers, see the children with epilepsy on their good days. Parents keep their kids at home when they are having 30+ seizures a day. And no, this is not an exaggeration. My son was having 20+ a day, and I know personally of children having more than 70 seizures a day. These parents choose between risking a severe seizure and denying their child a birthday party. If they have the party the child will get excited, and more than likely will result in severe seizures – do you deny your child this?

It is very common for people who have not had personal experiences with disabilities to not truly comprehend the impact it can have on a person’s life. This is not their fault. They have no way of knowing without having had a personal experience. However, this does not grant them the right to assume that they know best.
A common issue that keeps popping up in my social circles lately is the lack of understanding of epilepsy in schools, and parents being told there is “nothing wrong” with their child, that there is “no good reason” why they are under-achieving in the classroom, and that the parents should be doing more at home. The main misconception is that a person with epilepsy is perfectly fine and completely unaffected by epilepsy most days, and when they have a seizure they experience an “event” and then return to normal. I do not claim to be an expert on epilepsy, but there are a few things that everyone should know.

Epilepsy effects people in different ways. Some do manage to control it with medication and it has little impact on their day to day life for the majority of the time. Others however, are not able to completely control their epilepsy, and these are the people I am referring to in this post. Please note, there is so much that can be said on the topic of epilepsy – I am just scratching the surface, and trying my best to be concise.

Most people have heard of grand mal seizures – this is the old terminology for a tonic-clonic seizure. This type of seizure is a generalized seizure which affects the entire brain, resulting in a “full body shaking type seizure”. However there are many other types of seizures, some of which actually cause more disruption to the brain and to daily life. Focal, or partial seizures affect only specific parts of the brain. They can however affect more than one part of the brain, and can lead to generalized seizures. Part of the difficulty in controlling seizures is that most medication is for a specific type of seizure – this results in some children (or adults) taking eight or more medications daily in an attempt to manage seizures.

Sometimes medication can’t control all of the symptoms of epilepsy. If a child is experiencing “abnormal background activity” in their brain, it means that there is “firing” going on that shouldn’t be. This can slow thought processes and delay learning and development. By this I mean the child may be slow to learn to speak, or to develop further speech, to read, write, and progress in general. Further, if the child experiences “absence seizures”, during which consciousness is impaired, again resulting in delays in development. If a child is essentially only conscious for half of their lesson, they can’t possibly learn like the other kids.
But epilepsy means more than this. Too much excitement, getting tired, catching a cold, stress, sudden change in environmental temperature, and many other things, can lead to the onset of a seizure. If there is a nasty flu at school a child with epilepsy may be required to stay at home to avoid getting sick. If they get too tired they may not be able to attend school. It sounds very simple – why not put them to bed earlier…? Often, the many small seizures and abnormal brain activity can be more draining than a larger seizure.

Parents of these kids worry constantly. They have no idea when the next seizure might be, or how severe. They don’t know if it will mean a night in hospital, or maybe a week. The next time you dismiss epilepsy and don’t give it another thought – ask yourself: if you had to, could you administer a needle with rescue medication to a seizing 5 year old? Could you remember to watch the clock from the minute the seizure started to know the exact length of the seizure? Could you remain calm enough to relay all of the information to the ambulance officers? Have you taken a walk in their shoes? No?  Well in that case, maybe you should take their word as gospel, and keep your opinions about the reasons for their child’s academic struggles to yourself.

NB.  Epilepsy Parents Australia have read this article and given me permission to post the link to their facebook page – it is a wonderful place to go for support from people who actually do know what you are going through.  Feel free to visit: https://www.facebook.com/groups/epilepsyparentsaustralia/

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Posted by on September 15, 2012 in Uncategorized

 

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