September 2010, that's when we got Max's seizures under control for the first time in his life. Since then, he has had a few seizures, but always while he's in the hospital and after a major surgery.
In the past couple of months, seizures have shown back up in Max. Everyone agrees he's growing, quickly, and we're playing a bit of catch up with his seizure medicine. This afternoon, I noticed his right arm start with the little tremors, then the twitching, then the stiffening until he was into the spasms which cause seizures.
Last week, his neurologist increased his medicine, and gave us a new plan for treatment to stop the spasms so it wouldn't cause a seizure. We tried that today, but it didn't work. They kept coming, even with the extra medicine and he was starting to have seizures.
Thankfully, I have his doctor's number on speed-dial and I got him after a couple of rings. He told me to give him another rescue medicine we have on hand and to call him back in 10 minutes. I had to call him back in 2 minutes, because the medicine is administered rectally, and came out within a minute of him getting it. So, I had to give him another full dose. This time it stayed in and we thought back to the days after Max's brain surgery where I would have to give him this medicine sometimes twice a day to stop seizures. This was before it was covered by our insurance and cost $250 a dose...which he would very regularly push out of his bum as soon as it was given.
I called his doctor back and he gave me a new plan for the clusters and seizures. He asked that we call him back tonight to let him know how Max was doing, and to call the on-call doctor at the hospital to get a refill on the rescue medicine since we went through our supply today.
Max was dozy all afternoon, really pretty stoned on all the medicine he got. He lay in the living room while we planted some more things in the garden, one of us always by him making sure he was doing okay.
We've gone up again on medicine, and we're hoping it starts to work! We're ready to say good-bye to seizures for another long stretch! It's hard to get back in the practice of rescue medicines, and calling doctors on a holiday weekend for instructions. But once again, I am so, so thankful for Max's doctors. They give us all the tools we need to take care of him at home for as long as we can. And trust us enough to know we will do what they say. I'm thankful today that meant staying at home and treating the seizures here.
Tonight, he's sleeping next to Momma in my bed. After all that medicine, I just want to make sure he's okay, and he always feels happy to sleep in my bed.