Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Hi Tracey, Just wanted to say how nice it was to see that you are starting to see an improvement in those night seizures When was still having them, usually early am ones, we used to see mainly '4' on the urine ketostix on waking, with a blood ketone level of about 1.2 - 1.5. This was despite the fact he was always 16+ urine reading at bedtime the night before. In fact, the higher his ketones were at bedtime, the lower they seemed to be by morning. Pretty sure this was all tied into calorie insuffuciency with him, as he was probably burning body fat during the day, hence the high evening readings, and then producing glucose overnight/early am which was in turn lowering his morning ketones. This year (while he has been seizure free) he is always 8 or above on the urine stix with usually 2.5 or above bhb on waking (so about 3.2 if compared to vein). He is usually still around16 at night time, but not the high high instant black readings of 16+ that we used to see in the 'old days'. Hoping this upwards trend continues for you guys, ----- Original Message ----- > Just recently, we finally (after four months of changing ratios AND calories) > are seeing higher blood ketones. And amazingly, we are also seeing > improvement in night time seizures. This week we had one night of no seizures....I > think this has happened maybe three or four times in the 13 years Skyler has had > epilepsy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 Thanks, . With our higher ketosis has come drunkenness...no doubt linked to drug toxicity. With all the knowledge I've garnered here (much from you, thank you), even our neuro is focusing on withdrawing meds, albeit slowly. We are cautiously dropping phenobarb and then will begin w/the Clobazam wean . We are trying to allay the early morning drop in ketones by giving a small bolus feeding around 3 AM To add to all the mystery, he has just completed a four week round of chemotherapy...as an experimental treatment for his Myasthenia Gravis which is now said to be intractable. Never a dull moment... Hope is doing well. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 Thanks, . With our higher ketosis has come drunkenness...no doubt linked to drug toxicity. With all the knowledge I've garnered here (much from you, thank you), even our neuro is focusing on withdrawing meds, albeit slowly. We are cautiously dropping phenobarb and then will begin w/the Clobazam wean . We are trying to allay the early morning drop in ketones by giving a small bolus feeding around 3 AM To add to all the mystery, he has just completed a four week round of chemotherapy...as an experimental treatment for his Myasthenia Gravis which is now said to be intractable. Never a dull moment... Hope is doing well. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 and then will begin w/the Clobazam wean . Hi Tracey, Wondering more about this. We have the Clobozam here but have not started it. Also have not finished reading the articles! We put the Keppra back and it's helping with the drops....but we are plagued daily by the early morning grand mals. Clobazam can make them worse? Oh great.... Barb Swoyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 and then will begin w/the Clobazam wean . Hi Tracey, Wondering more about this. We have the Clobozam here but have not started it. Also have not finished reading the articles! We put the Keppra back and it's helping with the drops....but we are plagued daily by the early morning grand mals. Clobazam can make them worse? Oh great.... Barb Swoyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 and then will begin w/the Clobazam wean . Hi Tracey, Wondering more about this. We have the Clobozam here but have not started it. Also have not finished reading the articles! We put the Keppra back and it's helping with the drops....but we are plagued daily by the early morning grand mals. Clobazam can make them worse? Oh great.... Barb Swoyer Quote Link to comment Share on other sites More sharing options...
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