Hi :) I've just found mumsnet & I'm really hoping that on a site like this, I can find others who have had similar experiences to what we are having now. I am at my wits end as what to do. If you have any advice or experience, it would be greatly appreciated.
Our son is 5 yrs old & in June had what the doctors put down to a fainting episode. They couldn't find anything in his blood work or observations, so that's what they called it.
His whole body went limp, he looked really vacant, was unresponsive & when he did start to come around, he made no sense at all & he threw up. Then he went to sleep & after a couple of hours, he was fine.
I've personally never seen anyone faint, so I have no idea.
He was sent for an EEG nearly 6 weeks later, but trying to get a 5 yr old to sit still for an hour just doesn't happen.
The guy doing the testing said it looked to him that our son was having absence seizures.
2 months later in August, the same thing happened again. So back to the hospital we go & again everything was normal. We were told that the results for the EEG were inconclusive, but there was differently something there. They also told us he wasn't having absence seizures (even though myself & a friend who's a nurse saw him have one)
After 5 hours at the hospital, they sent us home. An hour later, our son started having a full blown seizure. Back at the hospital, they run all the same test again. This time he didn't wake up, he was totally unresponsive (even when they took blood) & his eyes were pointing in opposite directions.
It was the scariest moment of my life.
He woke up at 5am & asked where his dad & sister were & why were we at the hospital.
When the pediatrician came to see us, she said he had epilepsy & had to go on Epilim.
When we questions the meds, she said they only real side effects to worry about were aggression (which isn't great as we have a 10 month old), being a bit hyper or sleepy.
So the choice was possible brain damage if the seizures get worse or some side effect.
He started Epilim that day.
Since he's been taking it, I've noticed a change. He doesn't listen, we have to repeat everything over & over, his short term memory is terrible, he has a lot of trouble concentrating (his teacher has also told us this), he looks tired all the time, he has become very loud & somewhat hyper after he takes his meds.
Last week I kept him home from school because he wasn't feeling well. He was asleep on the lounge & I woke him to give him his meds & he was acting really odd. The same way he does after a seizure. Not making any sense with what he was saying, then noises not words, being really sleepy & his eyes looking very vacant.
You can always tell be looking at his eyes.
But because I didn't see him have a seizure, the doctors aren't classing it as one. All we been told to do is up his dose of Epilim.
To me, this isn't good enough. He hasn't had anymore tests done. We're not sure on the type of epilepsy he has & they're not worried about any of the things we've told them, like his lack of concentration. They said 'See how he goes next year in grade one'.
What can I do? Who can I talk to? I just want to know what is happening to my little boy & how I can help him.