Liz’s Story 

Codie is now 17, is on a mixture of anti-epileptic drugs for complex partial seizures. She has however a social life and a boyfriend. She has gone from five or six seizures a month to one a month. 

She had her first seizure at eight months and was diagnosed with epilepsy when she was fifteen months old. We were going shopping at the time of her first seizure, I went to get her out of the car and she was all stiff. I remember racing her to the local hospital saying “she is dying” which looking back really seems quite silly now!! From about fifteen months Codie was uncontrollable with her seizures, there was no pattern to them, she seemed like a time bomb waiting to go off. We never knew when they would happen or what type of seizure she would have. 

She had many medication changes through her early life and at one stage she stopped having seizures for two years and we were able to stop her anti epileptic medication. However, six weeks later she went back into seizures and we had to start over on the different drugs again. Codie has had seizures in swimming pools, on top of slippery-dips, and in many other difficult places – they are scary things. 

At school she was unfortunately bullied and teased which built up to a very large seizure in 2001 and she has not been back to school since. This seizure happened when she was 13, and lasted for ten hours. Codie was placed into a drug induced coma. At the time I was warned by professionals that she may never make a full recovery and it was likely that I may need to choose a nursing home.  

Looking back on that time it really affected the whole family. Codie’s younger brother had to be pushed aside and often stayed at friend’s places. His response was to not want to go to visit her in the hospital; he devised strategies so that he could stay away, such as leaving his shoes at home or in the car as he knew that he would not be allowed in intensive care without shoes on his feet.  As for myself, I spent many days at the hospital debating about what would happen if I tripped over the life support systems (I didn’t want my daughter to be a “vegetable”). Nobody could tell us anything, they probably were waiting to see what would happen too. After one month Codie came out of the coma without brain damage and we were so relieved. 

In 2003 because of the problems Codie found at school she decided to go to TAFE to finish her schooling. She coped for a while but the stress and expectations at TAFE were too much for her and she had another big seizure which the local hospital staff were unable to stop. She was sent by Careflight to one of the major Brisbane hospitals.  She was put into another drug induced coma but this time it was not as easy for her to recover and she had to learn to walk and talk again. 

Codie says when she was in her comas she heard everything that was said, even quite embarrassing things. She can relate incidents about nurses talking about her without realizing that she could hear. Some of the things they said were quite unkind. There was one particular person who was physically very rough with her while she was in the coma, that she disliked greatly. The doctors at the Mater were wonderful and surprised that she was able to come out of her seizure with no permanent brain damage. 

My daughter has my coping mechanisms and we laugh about things now. When she comes out of a seizure she panics, so we make a joke of things so she doesn’t get overwhelmed. She still has seizures but not as bad as they used to be. She started to take a birth control pill recently and something positive has happened, she seems to be a different girl. We are beginning to think perhaps hormones have had a big impact on her seizures.  

Codie has just started to take responsibility for herself, she is starting to take pride in herself and personal grooming and her energy levels are much higher. She still has difficulty with self esteem and not a great number of friends but is a lot happier in her outlook on life. 

I would like to tell all mums who are coping with a child with epilepsy to never give up hope, every child is different, but believe in the “gut” feeling all mums get about your children. If you don’t believe that what you are told is right, then learn more, read more, talk to others and you will find that you are not the only one who is going through the same situation. I never stopped reading, learning and talking to people. 

I believe that you can’t keep a child wrapped in cotton wool, but I have taught her that when she gets a warning to get off the bike, come out of the water, come down from the high places and be prepared. Life keeps going, you have to laugh about things, and be knowledgeable about things, it’s so easy to “crawl under a rock” and pretend the problem doesn’t exist. The whole family does live on “red alert” however, and we all know what to do when things happen.  

Codie would love to have contact with anyone who has similar types of seizures or are going through the same trauma that she has experienced, especially young people her own age. She feels that it will help her to manage knowing that there is others coping with the same issues. 

Cody can be contacted through Epilepsy Queensland.