Sunday, 2 February 2014

We lose one lot of medicine, and gain another

It's been a good weekend. I've given up using Seth's constipation medicine because I couldn't get a happy balance; he spent most of his time with painful wind and when it came to 'number 2s' we either had a 'drought' or a 'flood'. So, the past few weeks I've been concentrating on his diet. We keep a diary of everything he eats, any time he has a lot of pain and every time he poos. Plus how he sleeps. That way we can see what might be triggering the problems. I found out that bananas are not good for someone who is constipated, which was a shock because Seth ate a lot of those. And this weekend he seemed more relaxed and happy than for a while, so maybe it's working.

I also started an epilepsy diary before Christmas. For the last few months of last year we had seen a few seizures and a couple even at night. They were also lasting up to 2 minutes. I've posted before about Seth's epilepsy; over the last few years it has been sporadical and it's un-medicated. I wasn't overly concerned about these new incidents, but they were not connected to him being particularly ill and I wanted to keep a track of them. I mentioned it Seth's consultant and he set us up with an another ambulatory EEG. I was happy about this but as I had not had anything to put in the diary since I started using it I was worried about crying wolf. However, the report from the 24-hour monitoring came back last week and apparently Seth is having 'many unwitnessed seizures, in wake and sleep'. It informed us that during the night Seth woke up about midnight, a minute later had a seizure lasting over a minute and then remained awake until 5. So not only did he have a seizure we had no idea about but he was awake for over 4 hours! Having finally fallen asleep he woke up again at 5.20. However, I think this was only briefly because the report then says he woke again at 7. But then comes the real kicker. Seth then had 3 further seizures each lasting between 1 and 2 minutes between 7 and 7.30.

And there was further brain activity later during that day that could have been seizure related. And we had no idea. No wonder he is so tired and grumpy if this is happening regularly! So, the upshot it he is going on medication. It's a worry, but he's still being very clever..