Dear Son Update

I apologize for the long delay between postings. Dear Son is having a rough summer. I haven't commented on it much but he has been having these cluster seizures since mid to late June. Essentially, he has a lot of little seizures in a row that seem relentless. Soon, he starts crying out, I come over and use his Vagus Nerve Stimulator which may or may not stop the seizure, then the process starts all over again in another minute and continues on for some fifteen minutes. It takes a reprieve and then this process repeats itself sometimes many times in a day. It is exhausting for him and exhausting for me. I have contacted Ped Neuro on/off over these past few weeks and he's tweeked some meds but we still don't have great control. Seizure control can be difficult at times because unlike most people with seizures, Dear Son was born without an gaba, a key inhibitory neurotransmitter. Dear Son had a long seizure on Wednesday that was fairly intense so I had to use Diastat (It's an emergency medication that stop seizures.). It lasted for some forty minutes total. I was fairly certain I was going to have to call the paramedics however it did eventually stop.

He had more seizures on Thursday and Friday. On Saturday, I started tracking them in the afternoon and he had a few every hour. Last night, I was up every 1-2 hours and at 4:45 a.m. he was crying out with a bad seizure. I got up, used his VNS a few times, then got his Valproic Acid. Sometimes that helps although it wasn't due until morning. After ten minutes or so the seizure was escalating pretty fast so I ended up using Diastat. I wasn't sure if I was going to have to call the paramedics or not since the seizure was pretty rough. The Diastat stopped the seizure within about 5-6 minutes though. That was the second time in a few days that I thought I might have to call the paramedics so I know that things are not very stable.

At 8:05 a.m., he had more seizures and I gave the rest of his morning meds. Hopefully, the med increase that Ped Neuro Doc made on Friday will help. Dear Son has an appointment with him next week. At that time, they mentioned a newer med that has been working well for patients that they may try.

I'll try to post when I can. At this point, I've been doing pretty much seven day a week care since last December which doesn't leave a whole lot of time for doing much else. School starts at the end of the month and for now, Dear Son will go two half days a week. I doubt he'll ever return to full days of school at this point and the half days will be stretching it.