The daytime seizures have mostly stayed away which has been really nice. Unfortunately the bigger night time seizures have continued so we got his VNS turned up yesterday. The current is now set at .75, on for 30 seconds and off for 1.8 minutes. The magnet is set to 1.0 and is on for a minute. Hopefully we'll see some improvement with this, but he will have it turned up again in 3 weeks regardless.
Friday, January 25, 2013
Thursday, January 17, 2013
Struggling
We went to the surgery follow-up appointment yesterday and the incision is healing nicely so he got the OK to submerge it in water again. That is good because he likes to play in the bath and didn't understand why he couldn't for the last 2 weeks.
John continues to do pretty well during the day. He's had some good therapy sessions and very few daytime seizures. But, for 2 days in a row now he has had a very bad grand-mal seizure around 5am. These are the kind where he shakes violently and doesn't breath. It scares us to death. And it completely exhausts him. So, today we had to keep him home from school yet again.
John continues to do pretty well during the day. He's had some good therapy sessions and very few daytime seizures. But, for 2 days in a row now he has had a very bad grand-mal seizure around 5am. These are the kind where he shakes violently and doesn't breath. It scares us to death. And it completely exhausts him. So, today we had to keep him home from school yet again.
Sunday, January 13, 2013
VNS #3
John had his VNS replaced again on Jan. 3. Over the last several months John's seizures had gotten progressively worse so we made an appt. to get the VNS checked. It was dead or close to it. So, that pretty much convinced us that the VNS was actually helping him so we had no choice but to get it replaced.
John did great during the surgery and once out of the general anesthesia he did not want to stick around so we left the hospital almost immediately. We were at Subway literally 90 minutes after he woke up. Crazy kid.
It was a challenge to keep him from taking the bandage off but with very close supervision we were mostly successful for the required 2 days. He then took the steri-strips off almost immediately but the wound looks like it is healing very nicely so no worries.
John has had a couple of bad days since the surgery, but overall he is doing MUCH better. They just turned it on a very low setting during the surgery but it has really helped him.
John did great during the surgery and once out of the general anesthesia he did not want to stick around so we left the hospital almost immediately. We were at Subway literally 90 minutes after he woke up. Crazy kid.
It was a challenge to keep him from taking the bandage off but with very close supervision we were mostly successful for the required 2 days. He then took the steri-strips off almost immediately but the wound looks like it is healing very nicely so no worries.
John has had a couple of bad days since the surgery, but overall he is doing MUCH better. They just turned it on a very low setting during the surgery but it has really helped him.
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