So, Caitlyn had a neurology appt today. To talk about maybe the long process of being weened off of her epileptic medication. She has been seizure free for a while. And me and her consultant are in agreement. No medication if necessary. She has spent so much of her life on meds we’re fed up with it.
Her tiredness is still a major issue. So, a plan of action is in place. Although like everything it’s going to take time. I kinda wish this was put into place 2 years ago. I don’t know why the waiting has to happen. I could have suggested these things needed doing back then. In fact I did. But protocol has to happen.
BUT she is to have a MRI scan [again] but not just any old MRI. She is having a 3T MRI which is basically the best of the best. Only a few machines in the whole country. And luck has it one is in Poole Hospital. It’s basically the high def of an MRI. It can look clearer and better at the brain. So that will be happening very soon, in the next month I’d guess. But then it’s Christmas. And all we do is wait so it might be in the new year now. The main reason for the MRI is to see if her brain is clear to come off of medication. The other reason, well, it’s to see if there are any growths.
Which leads us onto the lumbar puncture she will be having. Not sure when but soon. And the reason for this? To check nothing untoward is happening. We didn’t say the word, but we both knew where we’re coming from. Cancer. Although I am HUGELY doubtful. The tiredness has been going on for 7 years now. I am sure there would have been a lot of symptoms along the way if it was pointing towards that. Scary times ahead. But like I said. I am very very doubtful it’s that.
So, there we are. More waiting. But on the right path. Just wish this path had a conveyor belt.