Intro: The DIagnoses

The Diagnoses

The event which changed all our lives was the day I was diagnosed with epilepsy. I was at a friends house, happily playing on the notorious monkey bars when I slipped and fell breaking my arm which we believe had triggered the attacks, that occurred three weeks later. According to my family, when it had happened I suddenly started to scream, it was as if my mind was fixated on something I was afraid of. Then out of no where the seizures began to change. I started to hunch over, my eyes widened open and fixed, my mouth became lethargic and saliva dribbled out. Then the most frightening thing happened, I began to shake uncontrollably. The whole family was there comforting me, then as if nothing had happened I came out of the trance still a bit disoriented but ok. The frightening thing was that I had no idea that I just had these fits and I carried on as if nothing had happened.

Constantly going in and out of hospital and having tests which monitored my electrical brain activity, using different machines varying in degrees of detail with eight EEG’s one MRI and three CT scans. It was not long before I was put on a Ketogenic diet, which consisted mostly of fat. This was a very unpleasant period in my life and my family’s life. However somehow we persevered and got through it with nothing more than a scar.

The doctors soon began to say that I may never grow out of it. That was when my parents began to become concerned with my education. Of course they were told not to bother and that a special school was advised. Because my parents put me back into the school I was already in I was able to live much of a normal life as possible.

Along with the support of a loving family and friends around was a big help when it came to coping with what we were all going through.. Mostly it was the faith and hope we had that I would somehow be ok and the faith we had in god was what kept us going and hoping and not losing faith that got us through. Though I would not say no to knowledge, finding out everything you can about epilepsy is not only empowering but it keeps a person’s mind at ease knowing what it is that you are dealing with.

It was not until many years later that I was told by my new doctor, Dr Berkovick that the diagnoses was wrong. It turned out I had a rare form of epilepsy called ring 20. Ring 20 is a rare epilepsy syndrome that occurs when the chromosome breaks on each arm of the chromosome 20 resulting in a ring formation. Everything that was done to get rid of the seizures had either no or little effect on the seizures themselves and to this day I still have them. In spite of this life it is good.