Seizures

[Adelejoh]

Hi
About 5 years ago, my son aged 9 was found in his room jerking, unresponsive, (having a seizure), to cut along story short (ambulance, blue lights, drips, etc) which resulted in 3 days in hospital. He had a seizures that had lasted up to 40 minutes. As this was out of the blue a barin scan and a EEG (3 months later) were done. It was diagnosed as Photosensitive Epilepsy and immediately put on daily medication and we were issued with recoverey medication for school, etc. After 1 year he was taken off the medication as he was seizure free. (great) a further 18 months later he had a another Sickness, absent, slightly jerky (age 12). again hormones and monitored by the consultant. 5 months later the same as above, and still put down to hormones. Again about 6 months later a major fit which resulted in ambulance, hopsital admittance again all with the same symptoms. After a phone call with the consultant still to change nothing, now age 13 still down to hormones, but would get us training in recovery medication to administer 5 minutes after the fit. 6 weeks later another small fit which didn't last 5 minutes so the medication did not help. 7 months passed nothing, now nearly 14 you are just starting to think it must be hormones, when he takes another, just dropped to the floor and started jerking, managed to give recovery medicine which sent him into a deep sleep. 3 months later, his Gran died and our cousin was found dead, he was really close to his gran and we were on full alert for this to have an affect on his health (again nothing). 1st April this year, 5 months after this (8 months seizure free) he started off by talking really strangly, this lasted about 10 minutes followed by a rash and burning up. Brief discussion with hopsital staff, which was no help whatsoever, panic took over and went to the hospital and on route took a major seizure in the car, (sickness, breathing jerking, grunting) 4 hours later after being sick again all over hopsital staff we were sent home. Advised that it was a Peti Mal and a Grand mal seizure and the rash was the brain sending the blood the wrong was round the body. Confused and stressed and still advised that he would grow out of it as at 14 and 1/2 hormones were the cause. 5 weeks later a repeat performance although we managed to control it in the house as the seizure part was not too bad.

The problem i am having is the change in the seizures and the behaviour in my sons moods after the seizure, he is either high as a kite or really low, how long does this last? All the seizures had resulted in a few days in bed with a really sore head and tiredness which is expected. The only good thing apparently is that he only takes them at night (after 5pm) and at towards the end of the week, so they have decided that tiredness and stress could be a the cause and will monitor the situation as to when they might start the medication to prevent it. Confused has anyone else got a history like this. I know it is not really that bad compared to people who suffer this daily. But i feel it is getting worse and i am really worried it will start coming more frequently. thanks