It seems that epilepsy can be a rollercoaster ride and we have definately experienced that lately.
On Thursday, October 20th Ben had 24 myoclonic and drop seizures. His average is about 10-12. On Friday he had about 14. My parents came into to town that evening and we were thrilled to have them with us. On Saturday, we increased the clobazam and he had a few drops - about 7. Sunday morning he had a tonic clonic seizure while asleep. It lasted about 2 minutes, he stopped breathing, and it was a pretty typical seizure for him. We braced ourselves for a day filled with more myos and drops.
But they never came!
In fact he did not have a seizure on Monday, Tuesday, Wednesday, or Thursday. We were rejoicing! It seemed like Ben was coming back. He even played in his T-ball game on Thursday night!
On Friday, during his nap he had another tonic clonic seizure. My mother in law said that it was short - only about 1 minute. We called the doctor and we would increase his clobazam again in the morning.
Friday night, he had numerous tonic clonic seizures - 7 in all. They started at 10:00 pm and his last one was at 6:00 am. It seemed like everytime we laid our heads down, one of us was yelling for the other to come help. We administered diastat, but that didn't work. We called the on call doctor and he advised we give him a clonazapam and keep giving him as much as he needed but to watch for decreased breathing.
After two clonazapams and another seizure we decided to call 911. The paramedics came and checked his vitals - he was breathing well. The paramedics talked with the on call doctor and then I talked with the doctor as well. He said it basically came down to what we can handle. He said that they could bring him in for an overnight observation period and give him some IV drugs, but there was very little they could do.
At this point I felt like the worst mom in the world. I didn't know what to do. But Leeon and I decided to wait. It was almost time for his scheduled meds and we thought we'd just try to hold on a bit longer.
I'm glad we decided to wait. We gave him his meds and he was seizure free for the rest of the day!
He had another tonic clonic seizure this morning while asleep. It was about 1 minute long. It will be interesting to see what today will hold.
Right now, we are thanking God that:
~ He hasn't had any myo or drop seizures for 7 days which means we haven't had to wear the helmet!
~ God gave us wisdom in the moment to keep him home.
~ The few days we had of no seizures we got to see a big improvement in his speech as well as just in general. This means that once we can get the seizures under control some of the things we've been worrying about will probably disappear.
~ We have so many people lifting us up in prayer.
We are praying that:
~ Ben will be completely healed.
~ Leeon and I will be strengthened physically, emotionally, and spiritually.
~ We will have wisdom to know what to do next.
Ben with some gifts from people praying for him.