Briter, Can hear your frustration with your son, but don't give up.
My daughter, who is now 20, developed epilepsy after a measles-mumps injection at 18 months. Wasn't actually diagnosed until she was about four, because it wasn't the grand mal form. In fact it proved to be more dangerous because she was unconscious but didn't fall down. One day when she was going to school she had a seizure and just kept walking out into the traffic.
About five years ago my uncle phoned one night and told me to switch to Channel 7, and there was this doctor doing revolutionary brain surgery on children with uncontrolled epilepsy. These kids were coming from all over the world. By this time my daughter was about 15 and after going through puberty very early, was faced with increased seizures because every time her hormone levels changed, off she went, often with up to 18 episodes some days.
I tried to keep life as normal as possible so as to avoid her developing a complex about her condition, but it was becoming very obvious to me that her life ahead was not going to be easy - very dangerous crossing roads, swimming etc, would probably never drive, what about employment? The list went on.
Her neurologist' solution was to increase medication, add extra medication but nothing helped. After seeing that program on TV I asked about the operation. He said she'd have to have an MRI, which we did, and then said we'd have to "wait and see". At the end of Grade 10 I realised we were running out of time because her school work was being affected. I didn't realise at the time that every time she had a seizure she wouldn't be able to remember what she had learnt, she'd get behind, get more stressed, more seizures, remember less. Get the drift?
When I pressed him some months later he told me we'd have to go to Melbourne (from Brisbane) to see if she was eligible for the operation. They did an MRI to see whether there was one focus for the damage in the brain or whether the epilepsy "spiked" in different spots. Luckily for her, the focus was in one spot so three weeks later she had the surgery to remove the damaged part of the brain. Had to have tests to make sure the removal didn't affect speech etc. Four years later, she has her driving licence, she travels to work on public transport, works full time in an accountant's office and studies commerce part-time. Truly remarkable.
I'm sure you've asked plenty of questions Briter, but just look at how different things could have been if my uncle hadn't seen that program and let me know and I followed it up.
As a matter of interest, I asked the doctor in Queensland why he hadn't recommended the surgery to me, and the reply was something like, you have to "earn" the privilege! WOT? Have 1,000 seizures and get one brain surgery operation free? The way the Queensland health system is it could be that ridiculous, but push on, ask questions of others and you may be delighted, as I am, with what you will find out.
