Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Sounds like loads of fun....NOT! Has Jake had a skin and/or muscle biopsy for the mitochondrial stuff? Sounds like the Depakote drop could have precipitated the events of late...maybe things will settle back down...? We finally have 4+ ketones for the first time in over three weeks. But Mr. Nightowl stayed up late again last night and was falling asleep at school so we came home early and he had to nap...had 7 <albeit smallish> seizures in a one hour period. Hard to imagine the diet's helping...other than no awake activity. We'll see how tonight goes. I just ordered the Precision Xtra glucometer that can read blood ketone levels. Guess we'll make the ultimate decision about the diet once his bhob are high... NO MORE DROPS, JAKE!!! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Sounds like loads of fun....NOT! Has Jake had a skin and/or muscle biopsy for the mitochondrial stuff? Sounds like the Depakote drop could have precipitated the events of late...maybe things will settle back down...? We finally have 4+ ketones for the first time in over three weeks. But Mr. Nightowl stayed up late again last night and was falling asleep at school so we came home early and he had to nap...had 7 <albeit smallish> seizures in a one hour period. Hard to imagine the diet's helping...other than no awake activity. We'll see how tonight goes. I just ordered the Precision Xtra glucometer that can read blood ketone levels. Guess we'll make the ultimate decision about the diet once his bhob are high... NO MORE DROPS, JAKE!!! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Sounds like loads of fun....NOT! Has Jake had a skin and/or muscle biopsy for the mitochondrial stuff? Sounds like the Depakote drop could have precipitated the events of late...maybe things will settle back down...? We finally have 4+ ketones for the first time in over three weeks. But Mr. Nightowl stayed up late again last night and was falling asleep at school so we came home early and he had to nap...had 7 <albeit smallish> seizures in a one hour period. Hard to imagine the diet's helping...other than no awake activity. We'll see how tonight goes. I just ordered the Precision Xtra glucometer that can read blood ketone levels. Guess we'll make the ultimate decision about the diet once his bhob are high... NO MORE DROPS, JAKE!!! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 We go in Monday for a sleep study, then transfer to another floor on Tuesday for LTM, followed by a spinal tap to re-test for neurotransmitter levels (they are off but it's still inconclusive) and maybe a little more mitochondrial digging. Still waiting on mito DNA. I dropped 1/2 of our last Depakote capsule about 2 weeks ago, things have been downhill since. Wondering if he might need it.... I HATE that damn helmet. Barb Barb Re: Tracey Keepin' that helmet shiny? Err... What's going on w/next week's admission? T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 We go in Monday for a sleep study, then transfer to another floor on Tuesday for LTM, followed by a spinal tap to re-test for neurotransmitter levels (they are off but it's still inconclusive) and maybe a little more mitochondrial digging. Still waiting on mito DNA. I dropped 1/2 of our last Depakote capsule about 2 weeks ago, things have been downhill since. Wondering if he might need it.... I HATE that damn helmet. Barb Barb Re: Tracey Keepin' that helmet shiny? Err... What's going on w/next week's admission? T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 We go in Monday for a sleep study, then transfer to another floor on Tuesday for LTM, followed by a spinal tap to re-test for neurotransmitter levels (they are off but it's still inconclusive) and maybe a little more mitochondrial digging. Still waiting on mito DNA. I dropped 1/2 of our last Depakote capsule about 2 weeks ago, things have been downhill since. Wondering if he might need it.... I HATE that damn helmet. Barb Barb Re: Tracey Keepin' that helmet shiny? Err... What's going on w/next week's admission? T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Thanks for the good wishes but he just got on the bus w/ drop #3 under his belt. At this rate I'M going to take the Ativan instead of giving it to him!! Yes, 2 skin biopsies, normal Muscle biopsy just came back abnormal....hence the mito DNA followup. He definitely has some mito SOMETHING going on. B. Re: Barb Re: Tracey Sounds like loads of fun....NOT! Has Jake had a skin and/or muscle biopsy for the mitochondrial stuff? Sounds like the Depakote drop could have precipitated the events of late...maybe things will settle back down...? We finally have 4+ ketones for the first time in over three weeks. But Mr. Nightowl stayed up late again last night and was falling asleep at school so we came home early and he had to nap...had 7 <albeit smallish> seizures in a one hour period. Hard to imagine the diet's helping...other than no awake activity. We'll see how tonight goes. I just ordered the Precision Xtra glucometer that can read blood ketone levels. Guess we'll make the ultimate decision about the diet once his bhob are high... NO MORE DROPS, JAKE!!! Tracey Quote Link to comment Share on other sites More sharing options...
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