Caiolin's Story

My son Caiolin is 8 years old and we live in Co Antrim, Northern Ireland.

In 2007, when Caiolin was seven, he was out shopping for the day with my daughter Gemma and myself when he experienced his first RAS attack – although I didn’t know what it was at the time. Caiolin had simply nipped his finger on the changing-room door and cried, so I kissed it better and he seemed fine.

Gemma and I continued with the shopping and then went to the till to pay for our goods. I couldn’t see Caiolin, so I called him but he didn’t respond. We headed for the door and there was Caiolin, sitting on the ground looking pale. Thinking he was tired, I got him up and we went over to the other shop. I was trying on a dress when the shop assistant ran in to get me, saying that my son was having some kind of turn.

I ran out and he was fitting, with his arms, legs and body jerking. He then became still and stopped breathing for around 6 or 7 seconds. He started to come around slowly and I drove him to A&E, where he had a physical examination and blood and urine tests. We were sent to the children’s ward, where they asked me more questions and sent in more doctors, but nobody knew anything. Caiolin slept in a side ward for 4 hours, then a doctor from New Zealand popped in to see him and asked if I’d heard of a condition called Reflex Anoxic Seizures.

Caiolin was released from hospital that evening with no diagnosis; they told me to go to my GP next morning. Believe me, I was so annoyed. I took him along to the doctor and he did an ECG on him there and then. The reading showed some signs of irregular heart rhythm, so the tracing was then sent up to the Children’s Hospital for the cardiologist to look at. Three days later the doctor rang and said it was nothing to worry about, but the cardiologist wanted to see Caiolin anyway.

Last June, Caiolin had a bad attack and I was called to the school. When I got there Caiolin was on the floor, gasping for breath and very pale – almost grey. The ambulance crew gave him oxygen, which helped a bit, and he was taken to the local hospital again.

This time I wanted an explanation for what was causing these fits. I found the Stars website and was so happy with all the information available; I can ring them at any time for help with any concern.

Caiolin’s school have now got all the information on the educational pack from Stars, but six months later I am still waiting for the school doctor to help the school with more on RAS. I have contacted Trudie from Stars and she has kindly said she will help sort out my problems. Caiolin is now 8 and he still has the attacks, so I stay at home all day when he is in school in case he has one. I feel there is no help readily available for parents like myself and the educational boards in Northern Ireland.

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