James’s Story

“I Wouldn’t Give Him Up For

 All The Tea In China”

Hi I am a mother with a son who has epilepsy.  

James is now nearly eight years old and has had epilepsy since he was two years and eleven months.  His epilepsy is the result of an accident he had when he was fifteen months old.  James fell backwards down fifteen steps and hung himself between the step and the wall causing trauma to his head and consequently resulting in an intellectual impairment. 

After his accident on the stairs James’s development and learning slowed however, it was just before his third birthday that he started falling over and hitting things with his head. He began falling over regularly, up to six times in nine days often hurting himself when he fell.  That was really scary.  What was worse was when I took him to my local doctor he thought I had been hitting him.  

We contacted the pediatrician who had worked previously with James and made an appointment immediately. He informed me that James had epilepsy and commenced him on a treatment of Epilim.  

By the time he had turned three James had become so aggressive and angry that we needed to get him to the hospital. While we were waiting he became so aggressive that he threw me up against the wall. The doctor at the time found it hard to believe that a three year old could be so strong however he was actually able to observe the aggression at the hospital and had to physically release me from his hold. We understood that James did not know what he was doing. When James repeated this behavior again it was determined that, although rare it was a side effect of Epilim. He was taken off Epilim and placed on Lamictal and Tegretol. Lamictal seemed to be more effective so he was taken off Tegretol and kept on Lamictal for the next two years, his medication was then changed to Topamax.

James has had three EEGs, an MRI and a Lumbar Puncture. It has been diagnosed that all of James’s epilepsy is in the frontal lobe. He has six forms of seizures, simple and complex partial, drop attacks, absence and when awake or asleep he has tremors. James also has high temperatures of between 38 to 40 degrees for no reason and we had been telling the doctors this for quite some time and none of his medication had been effective to stop them. Just last year we were informed that the high temperatures may be a form of seizure and for him, Lamictal was found to control them.

James has now also been diagnosed as ADHD and they cant give him anything for it, which makes it ten times worse.  One thing that is very positive however is that the doctors are now listening to us and have been very helpful.

James is now at Woodridge Special School and is working well to his capacity. He has brought home ribbons from sport and seems quite content.

It has not been easy, I took up a lot of voluntary work and kept myself busy, I talk to people and attend support groups for myself and others, which has been really helpful. You do tend to get upset a lot when things aren’t going right.  James is a lovely boy it is a joy to have him.  He may get you so mad so often but he is our son. You learn to deal with it.  I wouldn’t give him up for all the tea in china he means so much to us. His brother loves him heaps. His brother sees the television advertisement and says “that’s my brother”!

James seems now to know when he is having a seizure; he knows what he has to do.