We haven't changed anything, but something has happened to John. He's completely out of control now. School couldn't handle him today. 3 teachers were watching him and they were getting pinched and bruised, etc. and Yoshie had to eventually go pick him up.
He had a big seizure after getting home which he had to sleep off. It is sad but it gave everyone a little break. I think his brain can use the break as well.
We have to try something so we are driving down to Eugene tomorrow to pick up John's first dose of cannabis oil. We're realistic but also very hopeful that this can help with his seizures and/or recent behavior issues.
Friday, December 19, 2014
Thursday, December 18, 2014
Crazy doctor visit
We had a follow up appointment with John's neurologist today. John was simply crazy. Unfortunately there is a Taco Bell near the doctor office and he saw it before going in. So, he fought like mad to get out of the room. We simply could not calm him down. Then he said he had to go to the bathroom. I wasn't sure if it was a trick or for real so I took him to be safe. He started eating as much of the antibacterial soap that he could. We fought and made a mess. I tried to clean up and he escaped and ran all the way outside before I could catch up.
I finally got him back in to the room and it took Yoshie, Dr. Roberts, and I all to try to keep him from escaping. I think we all got pinched a few times. Finally Yoshie had to take John out so I could at least talk to Dr. Roberts. John ran to the bathroom and ate some more soap before Yoshie could get him out.
That was rough for sure, but it's always good when the doctors can see John at his worst.
John continues to have big daily seizures and has these behavior issues on top of that, so we clearly have to continue to try to things. Next up is another attempt at cannabis. The Dr. thought this was the logical next step. Then, John has the opportunity to be in a study for synthetic cannabis. Not sure if we'll do it or not since it requires 7 nights in the hospital for monitoring. We don't mind that part, but I simply don't think John could stay that long, especially with an IV. We're hoping the real stuff works like magic and we can continue to use that!
I finally got him back in to the room and it took Yoshie, Dr. Roberts, and I all to try to keep him from escaping. I think we all got pinched a few times. Finally Yoshie had to take John out so I could at least talk to Dr. Roberts. John ran to the bathroom and ate some more soap before Yoshie could get him out.
That was rough for sure, but it's always good when the doctors can see John at his worst.
John continues to have big daily seizures and has these behavior issues on top of that, so we clearly have to continue to try to things. Next up is another attempt at cannabis. The Dr. thought this was the logical next step. Then, John has the opportunity to be in a study for synthetic cannabis. Not sure if we'll do it or not since it requires 7 nights in the hospital for monitoring. We don't mind that part, but I simply don't think John could stay that long, especially with an IV. We're hoping the real stuff works like magic and we can continue to use that!
Wednesday, December 03, 2014
Another seizure video
Here are the types of seizures that John is suffering from these days. These can happen once every 2 days, up to 4-5 times in a single day.
http://youtu.be/UwEgNEFQJAo
http://youtu.be/UwEgNEFQJAo
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