The Australasian Tuberous Sclerosis Society

My son Luke (5 yrs old) has TS and I thought I'd share parts of his life with you.

He was diagnosed at 5 mths of age and was seizure free for 6 months. The seizures then returned and have stayed with him since. The types of seizures have varied in the last 4 years along with his medication.

I was a bit wary last December when our Neurologist suggested we discontinue one of his anti-epileptic drugs as Luke was taking a cocktail of three drugs twice a day and we were okay living with small seizures daily that didn't seem to affect his behaviour or day-to-day life. He was just about to turn 5 and start "big school" next year and I didn't want to try anything drastic and jeopardise the big step to Kindergarten.

After lots of discussions and explanations I agreed with the Neuro and started to decrease his medication very slowly. It was going to take about 12 weeks before he was free of this drug. Everything started out fine, there was no change in his seizure pattern for better or worse in the first 6 weeks THEN the head nods came - OHHHH how I hate those seizures.

After persevering with them for 3 days I rang the Neuro who calmed me and talked about our options, including introducing a different drug if the seizures were still occurring in another 3 days time. As it was the Christmas school holidays and I was home with the kids, I decided to ride out the storm closely supervising Luke and ready to call the Neuro if they got worse or as soon as the 3 days were up. Miraculously within 2 days ALL the seizures stopped. The head nods stopped and the other partial seizures stopped - all within weeks of his first day of school. I don't know how this happened and neither does the Neuro, but I don't care, we'll take advantage of this 'seizure free' time and try and teach Luke as many things as we possibly can before they start again.

I hope it doesn't sound pessimistic that I'm waiting for the seizures to return and I'll be extremely excited if I never see another seizure again, but I like to be realistic and prepared if and when they do. No-one can assure me they will never return, no-one can tell me when and what type of seizure he may have in the future and no-one can tell me what drug will work when they do. It's all trial and error and being aware of what could happen and then reacting and treating each problem when it occurs is the only way I can keep sane - or try to anyway.

It is now Luke's fifth week at School (he attends a Special School not too far from home) and even though it's still hard to get him out of the car in the mornings he isn't crying as much when I leave him and is very happy when I return. His speech is getting better, his behaviour is better, his attention span is better - All in All - everything is better. A great combination of a good school and no seizures can do wonders.

If you have any stories like mine or something you wish to share I would love to read it and I'm sure others would too.