May!

We made it through the month of April with only 3 clusters of seizures to record...but we were very nervous we wouldn't be able to do so. Oliver's last cluster was the 19th of April and we thought his clusters were getting closer together again. On 4/25 we saw single spasms throughout the morning so I gave him his first bit of Clonazepam in over 3 months. Just a 1/4 of a pill to see if I could head off any impending cluster. It seemed to work because Oliver did not have any clusters that day or during the rest of April!

He has , however, started May out with a bang. I woke up last night at 1am and I could hear Oliver yelling during intervals up in his bedroom. I finally came out of my sleepy fog enough to realize he was having spasms and woke Jason up to see if he though it sounded like a seizure. I don't know how long he'd been seizing and I feel awful that I may have left him up there seizing for more than a few minutes. The spasms were mild and not as close together when we brought him downstairs so I can only assume he had already been seizing for a good 5-10 minutes. We were nervous it had been going on for awhile so we gave him half a Clonazepam to settle him down and he eventually did , and was able to go right back to sleep immediately. He slept in our bed all night, because we were both so nervous about not hearing him. Luckily, Tobin didn't make his usual trip down to our bed!

I keep hoping this current bit of seizure activity is related to the end of the Vigabatrin wean and that Oliver will settle down in time and continue to see great seizure control in the coming months.

He's had a very rough weekend, lots of fussiness and crying (hopefully wean related) so we are all a bit tired today. The diet continues to be going well and we're even getting a lot of his therapies in now that he's more awake during the day.