John's myoclonic seizures have been getting slightly worse all summer long. He's still doing great, but we felt it was time to show the doctor what he was now experiencing.
We sent him these 2 videos:
After seeing these videos, he agreed that these were definately seizures (something he wasn't willing to admit a few months ago). Despite this, we got the OK to lower his Felbatol level, and hopefully get rid of it altogether in the near future. He just said to watch John carefully and if he starts falling or having Tonic-Clonics then we need to stop the reduction. It's been almost a week since we lowered the drug to 1ml, twice a day, and we haven't seen any problems yet.
Friday, August 22, 2008
Tuesday, August 19, 2008
Summer trips
Here's some pictures from our road trips last week:
Trillium Lake
Trillium Lake
John has been a good car traveler lately.
This is actually at our local rec center
At the beach. John got soaked.
Hotel pool
Big chowder at Mo's
Dodge Park
Eating some Haagen Daz
Trillium Lake
Trillium Lake
John has been a good car traveler lately.
This is actually at our local rec center
At the beach. John got soaked.
Hotel pool
Big chowder at Mo's
Dodge Park
Eating some Haagen Daz
Friday, August 01, 2008
Summer 2008
I haven't posted in awhile. As usual, that means things are pretty much unchanged from my last post. John continues to have several clusters of myoclonic seizures every day, but he doesn't fall and seems to recover quickly. So, these days, we are much more focused on his development than his seizures.
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).
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