Dealing with epilepsy

Dealing with epilepsy

While 2 or more seizures are required for a diagnosis of epilepsy (also known as a seizure disorder) according to the Mayo Clinic one in ten people will experience a seizure at some time in their life. According to Epilepsy Australia, epilepsy directly affects about

You or your child may have a friend that has epilepsy and it can be scary seeing your first seizure but it is less so if you know what to do. Don’t let a fear of not knowing what to do stop you or your child from enjoying the company of a person with a seizure disorder. If one of your children’s friends has epilepsy and your child wants to invite them over then talk to the child’s parent and ask “what do I do if Johnny has a seizure?”

SEIZURE – FIRST AID

Epilepsy Australia has a free seizure first aid poster you can print from the internet at http://www.epilepsy.org.au/home/headline/files/web2/getontheteam/gt_index.asp

or call 1300 37 45 35 for an information pack.

I recommend viewing (and maybe printing out) the poster for more information but basically the recommendations from Epilepsy Australia for a tonic clonic seizure (grand mal) are

DO:

• Remain calm
• Stay with the person
• Time the seizure
• Protect from harm
• Place something soft under their head
• Loosen tight neckware
• Roll onto their side – after jerking stops or immediately if vomited
• Maintain privacy and dignity
• Observe and reassure until recovered.

DO NOT:

• Put anything in their mouth
• Restrain them
• Move person unless in danger
• Apply CPR or EAR

(In the unlikely event resuscitation is necessary commence once jerking has stopped.)

CALL AN AMBULANCE IF:

• You are in any doubt
• The seizure occurs in water
• You arrive after the seizure has started
• Injury has occurred
• Food, drink or vomiting in mouth during seizure
• Jerking lasts longer than 5 minutes or longer than normal for that person
• Another seizure follows quickly
• A complex partial seizure lasts more than 15 minutes
• The person has breathing difficulties after the jerking stops
• The person has diabetes
• The person is pregnant and is having a tonic clonic seizure
• It is the first known seizure.

Our experiences with seizures in public-
I met and fell in love with an amazing man who has a seizure disorder.
One day my husband was alone and had a seizure in the driveway of the hospital carpark (we both worked at the hospital). One of the catering staff drove in and saw him on the ground. She panicked – parked her car and ran into the hospital to get help leaving him lying on the driveway! Luckily no one drove over him before help arrived.

Another time we were in Kmart in a quiet section near the self serve photo machines when he had a seizure. The people near us remained calm and asked if I needed any help. Initially I declined but then asked for help to ensure that he didn’t hurt himself by banging into the shelves. They helped by placing jackets etc between him and the shelves. A manager came along and quietly asked if we needed help. We had it under control so I declined. When Haydon came out of his seizure the people helping us returned to what they were doing leaving him with privacy.

If you see someone having a seizure and they have someone with them – ask that person if they need any help. If they decline then please don’t stay to watch. It’s hard enough having a seizure without coming to and finding an audience of spectators.

When my husband had a seizure I used to talk to him to reassure him during the seizure. He once told me that he can sometimes hear me during his seizures. It also helps me not to feel so useless.

EPILEPSY DOESN’T MEAN YOU HAVE TO WRAP A PERSON IN COTTON WOOL

My husband refuses to let his epilepsy stop him from doing things he want to do (except driving – he considers it unacceptable to put other people at risk).

Prior to surgery last year his epilepsy was rather severe. With medication his seizures were usually when he was sleeping but he had the occasional daytime seizure without warning.  When he had vomiting or diarrhea his medication did not get absorbed and he had to be hospitalized.

Despite his epilepsy he used to work in vertical rescue both in New Zealand and in the US (climbing cliffs etc to rescue people etc). After smashing his ankle in a climbing accident he had to give up rescue work so went to uni to become a nurse. I think one of the reasons he is such a good nurse is because he spent so much time in hospital as a child.

Last year a month after our wedding he had brain surgery to reduce his seizures. The surgery was more successful than we had dreamed to hope. So far he has been seizure free and when he has been seizure free for 12 months he will be eligible for a drivers license for the first time in his life at the age of 30.

SEE THE PERSON NOT JUST THE CONDITION

My husband objects to being labeled as an epileptic. He is much more than a disorder. He is a person first and foremost, he is a Kiwi, a husband, a son, a brother, a friend, an uncle, a nurse etc who just happens to have a seizure disorder.