Has it really been nearly 2 years???

Has it really been nearly 2 years since my last post??? Holy moly! Well to catch you up a bit, Alex started mainstream at the start of last year. I found a fantastic school about 20 minutes drive (half hour in school traffic) that has really gone above and beyond to accommodate him. The teachers are all friendly and willing to communicate as need be and he's happy as a pig in mud.

We saw a neurologist roughly 12 months ago as Alex was having seizures roughly every 3 or so months and we managed to get a diagnosis of epilepsy and an epilepsy plan for the school. This wasn't easy as he's had at least 4 EEG's none of which have shown any indication of epilepsy but I pushed the point to the neurologist that the school needed an action plan,  so we got the diagnosis and the plan. Everything was travelling well until shit hit the fan recently.

Alex's seizures have taken a sudden and severe turn for the worse. He's having seizures if not every day, then every other day now. About a fortnight ago he had a complex partial seizure, which is kind of like sleep walking, where he walked out of school grounds through the school car park and down the street. Luckily a teacher leaving the school for lunch spotted him. He had no idea nor no memory of what he'd done. 

He's also had a few absence seizures and other CP seizures. He's in a day dream like state, almost like a zombie at least 70% of the time now, even his teacher from last year commented how his personality seems to have changed and he's just not with it. 
It's really stressful at home with Alex, trying to get him to "stay with it" I can't trust him while we're out because he can wander off in the blink of an eye. I'm really stressed about what's going on in his head. Googling just paints bad scenarios. 

He has the Neurologist on Monday, but I know that's just going to be the first step in a long journey of figuring out what's wrong, he's going to need an MRI, his paediatrician wants to see him. He's going to miss a fair bit of school. I'm not coping well, freaking out a lot I don't know how to handle this, 

We've had to make changes to Alex's school drop off and pick up routine which he's really unhappy about because it takes away his independence. Now instead of dropping him off near the gate and walking himself in, he has to be walked right up to his classroom door, and at pick up time, instead of meeting me under the shelter at the front of the school, I pick him up from the classroom. He is restricted to only playing in the front school playground because that's the only playground that has full time supervision and at play times and excursions, he has to wear a high visibility vest. It feels like I'm punishing him for something that's not his fault. At the same time though, I have to put his safety first.

He's even caught me off guard, yesterday at Bunnings, I took my eyes off him for a few moments to load the boot, next thing I look up and he's wandered off halfway across the car park and there's cars everywhere. I panicked, yelled at him an he got all upset. It's like I've got a 2 year old again, I can't trust him, not even for for a few seconds.

I don't know what the outcome of all these tests will be but I get the feeling we're in for another long, hard chapter.