Post by Amy Lombardi on Apr 24, 2009 16:01:09 GMT -5
Subject: not sure what to think?
Posted by: Brandy Wempner
Mar 13th, 2009 - 8:38 PM
I was wondering if anyone has ever heard of a remission period? Our 5 year old has went from sitting in his chair for the better park of a day to walking and dacing. He is still shaky, but can hold his own. He also was mostly non-verbal and has said more words in the last 2 weeks than all of last year. His seizers have also decreased. Or is this the calm before the storm.....
Shannon
Mar 14th, 2009 - 5:43 PM
Hey Brandy-
First of all, YAY!!!!!
We have experienced stuff like this with our little guy as well. He is almost 6 and will have days where it is almost like he is getting back a little bit of what he has lost. It never lasts long for him though. Like a couple of weeks ago he rolled over and managed to push himself up onto his knees and just kind of sit there. He hasn't been able to do that since around New Years. He couldn't do it today though either (he might be able to roll over, but it takes him a lot of effort and there is no way he couple push up onto his knees). I think the brain continuously finds new pathways to regain some of the lost abilities. It is a regression, improvement, plateau, regression, improvement, plateau type of cycle. Some kids never see the cycle while others will plateau for long periods of time. Nolan typically will regress and plateau with no improvement. If we do see improvement, it doesn't last long.
Another thought I had is meds. Did he recently change meds or hit the optimum dose? When Nolan was ramping up on his depakote he was almost in a zombie like state until his body got used to it. It took some time, but he eventually returned to what was normal at that time for him. Which was running and playing and learning like other kids.
All I can say is get out the camcorder!
Shannon
Posted by: Brandy Wempner
Mar 13th, 2009 - 8:38 PM
I was wondering if anyone has ever heard of a remission period? Our 5 year old has went from sitting in his chair for the better park of a day to walking and dacing. He is still shaky, but can hold his own. He also was mostly non-verbal and has said more words in the last 2 weeks than all of last year. His seizers have also decreased. Or is this the calm before the storm.....
Shannon
Mar 14th, 2009 - 5:43 PM
Hey Brandy-
First of all, YAY!!!!!
We have experienced stuff like this with our little guy as well. He is almost 6 and will have days where it is almost like he is getting back a little bit of what he has lost. It never lasts long for him though. Like a couple of weeks ago he rolled over and managed to push himself up onto his knees and just kind of sit there. He hasn't been able to do that since around New Years. He couldn't do it today though either (he might be able to roll over, but it takes him a lot of effort and there is no way he couple push up onto his knees). I think the brain continuously finds new pathways to regain some of the lost abilities. It is a regression, improvement, plateau, regression, improvement, plateau type of cycle. Some kids never see the cycle while others will plateau for long periods of time. Nolan typically will regress and plateau with no improvement. If we do see improvement, it doesn't last long.
Another thought I had is meds. Did he recently change meds or hit the optimum dose? When Nolan was ramping up on his depakote he was almost in a zombie like state until his body got used to it. It took some time, but he eventually returned to what was normal at that time for him. Which was running and playing and learning like other kids.
All I can say is get out the camcorder!
Shannon