Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 OH MY GOD....Hannah has the same type of seizures. I assume she is cognizant because she looks like she is afraid, but is still too little to tell us anything. I have explained it to her neurologist and he looks at me like I am crazy. Hannah's ketones have run high w/ no other sypmtoms as well. I have given her 1/2 tsp. applejuice when in doubt and that has always helped. Ketones Sky High We are having an awful time, here w/return of day time seizures after six months of control. Have been monitoring blood ketones on and off...they're always fine. Am blaming the return of these seizures as well as ten-fold increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: We've successfully cut the dose in HALF yet have not seen a level change until the last drop about 2 1/2 weeks ago.) Now, Skyler's just been brought home from school after his biggest seizure yet during the day...and his blood ketones are off the chart...literally...higher than they've ever been. COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, though. Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. It looks like his whole face is in complete convulsions--both sides. His limbs don't move...he doesn't drop anything or fall...and he is totally cognizant of the seizure...a bit 'foggy' afterward. Any help will be greatly appreciated. I'm so distraught.... Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Let me give it some thought. Try to keep calm...I know it's awful. The face seizure...hmmm...Jake sometimes does that during his generalized tonics...his face just contorts and twitches...and it's terrible ... but for him it's a " part " of a grand mal. Not sure, maybe it could be a partial? Remember Leibscher, 's mom? She initiated the diet w/ us at Hopkins ikn 1997. She started the ep-kids list. Anyway....she had a horrible time after weaning meds...finally weaned them all and her son did terribly. I think Phenobarb was one of them, or maybe THE one. I always think of her when all the people on the list stress weaning meds, but sometimes that's the wrong way to go. For many kids I suspect. She even wrote a long post about it that I saved...maybe I'll send it sometime for another perspective. Can you put the phenobarb back? Even a little? Are you checking urine ketones too? Using keto stix? How are those readings? Some kids DO do worse w/ higher ketones....maybe try giving him a shot of OJ or the like....and see how he does. Maybe lower the ratio too? Hang in there Tracey. Maybe he's getting sick? Has strep or another infection that you can't see? Any new foods? BSwoyer Ketones Sky High > > We are having an awful time, here w/return of day time seizures after six > months of control. Have been monitoring blood ketones on and off...they're > always fine. Am blaming the return of these seizures as well as ten-fold > increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: > We've successfully cut the dose in HALF yet have not seen a level change > until the last drop about 2 1/2 weeks ago.) > > Now, Skyler's just been brought home from school after his biggest seizure > yet during the day...and his blood ketones are off the > chart...literally...higher than they've ever been. > > COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, > though. > > Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. > It looks like his whole face is in complete convulsions--both sides. His > limbs don't move...he doesn't drop anything or fall...and he is totally > cognizant of the seizure...a bit 'foggy' afterward. > > Any help will be greatly appreciated. > I'm so distraught.... > > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 I well remember that with and .....one of the " benefits " of being on these lists for so long, huh. But in this case its only been 2.5 weeks since the wean. If his ketones are sky high, I would try dropping the ratio a little and see if that helps. The diet changes the metabolism and so does the meds. Sometimes with a med wean you have to either increase or decrease the ratio as you get rid of the drug. I agree that some kids do need the drugs but I think you need to wait long enough to let the wean work its way through before you can make that assessment. The seizure sounds like some kind of partial complex Barbara Swoyer wrote: > Let me give it some thought. Try to keep calm...I know it's awful. > The > face seizure...hmmm...Jake sometimes does that during his generalized > tonics...his face just contorts and twitches...and it's terrible ... > but for > him it's a " part " of a grand mal. Not sure, maybe it could be a > partial? > > Remember Leibscher, 's mom? She initiated the diet w/ > us at > Hopkins ikn 1997. She started the ep-kids list. Anyway....she had a > horrible time after weaning meds...finally weaned them all and her son > did > terribly. I think Phenobarb was one of them, or maybe THE one. I > always > think of her when all the people on the list stress weaning meds, but > > sometimes that's the wrong way to go. For many kids I suspect. She > even > wrote a long post about it that I saved...maybe I'll send it sometime > for > another perspective. Can you put the phenobarb back? Even a little? > > Are you checking urine ketones too? Using keto stix? How are those > readings? Some kids DO do worse w/ higher ketones....maybe try giving > him a > shot of OJ or the like....and see how he does. Maybe lower the ratio > too? > > Hang in there Tracey. Maybe he's getting sick? Has strep or another > infection that you can't see? Any new foods? > > BSwoyer > Ketones Sky High > > > > > > We are having an awful time, here w/return of day time seizures > after six > > months of control. Have been monitoring blood ketones on and > off...they're > > always fine. Am blaming the return of these seizures as well as > ten-fold > > increase in nocturnals on our latest phenobarb wean. (Quick history > on > the wean: > > We've successfully cut the dose in HALF yet have not seen a level > change > > until the last drop about 2 1/2 weeks ago.) > > > > Now, Skyler's just been brought home from school after his biggest > seizure > > yet during the day...and his blood ketones are off the > > chart...literally...higher than they've ever been. > > > > COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of > hyperketosis, > > though. > > > > Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and > foreign to > us. > > It looks like his whole face is in complete convulsions--both > sides. > His > > limbs don't move...he doesn't drop anything or fall...and he is > totally > > cognizant of the seizure...a bit 'foggy' afterward. > > > > Any help will be greatly appreciated. > > I'm so distraught.... > > > > Tracey > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Tracey, I am so sorry that you are having such a hard time. It does sound like ketones are too high. Langan always had more seizures with high ketones. The seizure you describe is similar to Langan's partial seizures. She is also too young to tell us if she is " with it " but she doesn't lose muscle tone and if you take her from me during it she will cry. Our neuro said it is a partial. Hang in there! Hope it helps! , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04 but keto kid at heart forever > We are having an awful time, here w/return of day time seizures after six > months of control. Have been monitoring blood ketones on and off...they're > always fine. Am blaming the return of these seizures as well as ten-fold > increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: > We've successfully cut the dose in HALF yet have not seen a level change > until the last drop about 2 1/2 weeks ago.) > > Now, Skyler's just been brought home from school after his biggest seizure > yet during the day...and his blood ketones are off the > chart...literally...higher than they've ever been. > > COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, > though. > > Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. > It looks like his whole face is in complete convulsions--both sides. His > limbs don't move...he doesn't drop anything or fall...and he is totally > cognizant of the seizure...a bit 'foggy' afterward. > > Any help will be greatly appreciated. > I'm so distraught.... > > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi Tracey, I would suspect pheno is an offender here.We had had very similar experience with pheno wean.We sucsessfuly dropped half of dose without any symptoms and then the hell started.During pheno wean ph was having alot of seizures,t/c every 3-5 days(his usual pattern 1 in a few weeeks),partials daily etc.I even thought we made a mistake and that pheno controlled his seizures,but on the othe hand I wanted to get rid of this nasty med,so went forward and finished wean.ph returned to his " normal " sezure pattern 1-2 weeks after complete wea,so at your place I would just wait and see Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23d 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 If ketones have gone up, you may find it is because of the sedating nature of the phenobarb being removed, means his metabolism may have sped up and he now requires more calories. Like the opp to when a 'hyping med' such as lamictal is weaned, (well it was a hyping one fr anyways) cals sometimes have to be reduced. If this is the case though, a diet result form a med change, (in Skyler's case his metabolism speeding up from the wean), then it might take a while to reflect on the scales as a weight loss, even up to a month. And if it is anything to do with this, it may all be being complicated from the actual withdrawal itself as well. When 's ketones went too high after ditching dep and adding carnitine last yr, we never saw the classic signs of hyper- ketosis, like no flushed cheeks, panting etc - those signs by the way are usually a result of the resultant increased acidity that usually comes with deeper ketosis, so you can have one without the other. If not diet related, then it may be that you have to put some phenobarb back and try taking it down slower now that the decrease does def reflect in his blood levels, or you could try an intervening med first ike a benzo for 12-24 hrs to try and halt the withdrawal cycle - if that's what is happening to him. If it were me, I would see if that v high ketone reading you saw is being repeated now as a pattern, and see if glucose is going too low at the same time, which would prob be happening if a cal deficiency were to blame. If so, I would try a cal increase first. If that didn't see any improvement, then look at a benzo to try and break any possible withdrawal problems, if that didn't work, put the phenobarb back to where he was before it hit the fan and try again at a slower rate. ----- Original Message ----- From: tflourie@... We are having an awful time, here w/return of day time seizures after six months of control. Have been monitoring blood ketones on and off...they're always fine. Am blaming the return of these seizures as well as ten-fold increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: We've successfully cut the dose in HALF yet have not seen a level change until the last drop about 2 1/2 weeks ago.) Now, Skyler's just been brought home from school after his biggest seizure yet during the day...and his blood ketones are off the chart...literally...higher than they've ever been. COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, though. Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. It looks like his whole face is in complete convulsions--both sides. His limbs don't move...he doesn't drop anything or fall...and he is totally cognizant of the seizure...a bit 'foggy' afterward. Any help will be greatly appreciated. I'm so distraught.... Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 I was going to say that! Bill I would just add that if it is like tegretol, the levels don't make much difference to the chances of withdrawal seizures. We found that the withdrawal seizures happen right at the end of the wean. So, if you start at 40 or 400, it doesn't make any difference. You can still get terrible withdrawal seizures. I am guessing, but I would think that it would have more to do with the length of time that you are using the meds. They seem to get " stored " in the tissues and sort of " come out " with the wean. What happens in the brain? That's another problem. If you see seizures and high ketones, you can always try adding orange juice and see what affect that has. It is very likely that it is the change in metabolism that you are seeing. We had to go back on tegretol after our first disastrous attempt to wean. & Hill wrote: > If ketones have gone up, you may find it is because of the sedating nature of the phenobarb being removed, means his metabolism may have sped up and he now requires more calories. > Like the opp to when a 'hyping med' such as lamictal is weaned, (well it was a hyping one fr anyways) cals sometimes have to be reduced. > If this is the case though, a diet result form a med change, (in Skyler's case his metabolism speeding up from the wean), then it might take a while to reflect on the scales as a weight loss, even up to a month. > And if it is anything to do with this, it may all be being complicated from the actual withdrawal itself as well. > When 's ketones went too high after ditching dep and adding carnitine last yr, we never saw the classic signs of hyper- ketosis, like no flushed cheeks, panting etc - those signs by the way are usually a result of the resultant increased acidity that usually comes with deeper ketosis, so you can have one without the other. > If not diet related, then it may be that you have to put some phenobarb back and try taking it down slower now that the decrease does def reflect in his blood levels, or you could try an intervening med first ike a benzo for 12-24 hrs to try and halt the withdrawal cycle - if that's what is happening to him. > If it were me, I would see if that v high ketone reading you saw is being repeated now as a pattern, and see if glucose is going too low at the same time, which would prob be happening if a cal deficiency were to blame. If so, I would try a cal increase first. If that didn't see any improvement, then look at a benzo to try and break any possible withdrawal problems, if that didn't work, put the phenobarb back to where he was before it hit the fan and try again at a slower rate. > > > > ----- Original Message ----- > From: tflourie@... > > > We are having an awful time, here w/return of day time seizures after six > months of control. Have been monitoring blood ketones on and off...they're > always fine. Am blaming the return of these seizures as well as ten-fold > increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: > We've successfully cut the dose in HALF yet have not seen a level change > until the last drop about 2 1/2 weeks ago.) > > Now, Skyler's just been brought home from school after his biggest seizure > yet during the day...and his blood ketones are off the > chart...literally...higher than they've ever been. > > COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, > though. > > Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. > It looks like his whole face is in complete convulsions--both sides. His > limbs don't move...he doesn't drop anything or fall...and he is totally > cognizant of the seizure...a bit 'foggy' afterward. > > Any help will be greatly appreciated. > I'm so distraught.... > > Tracey > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Keep calm. You are seeing the bad side of a med wean. It is a lot worse near the end. Bill tflourie@... wrote: > We are having an awful time, here w/return of day time seizures after six > months of control. Have been monitoring blood ketones on and off...they're > always fine. Am blaming the return of these seizures as well as ten-fold > increase in nocturnals on our latest phenobarb wean. (Quick history on the wean: > We've successfully cut the dose in HALF yet have not seen a level change > until the last drop about 2 1/2 weeks ago.) > > Now, Skyler's just been brought home from school after his biggest seizure > yet during the day...and his blood ketones are off the > chart...literally...higher than they've ever been. > > COULD HIS KETONES BE TOO HIGH?? He's got no other symptoms of hyperketosis, > though. > > Also....CAN ANYONE IDENTIFY THIS SEIZURE TYPE: It is new and foreign to us. > It looks like his whole face is in complete convulsions--both sides. His > limbs don't move...he doesn't drop anything or fall...and he is totally > cognizant of the seizure...a bit 'foggy' afterward. > > Any help will be greatly appreciated. > I'm so distraught.... > > Tracey > > > Quote Link to comment Share on other sites More sharing options...
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