Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 We have observed the same. Saro kathy j irwin wrote: >We do..... and anytime has a seizure, his urine pH has risen >(frustrating!!!) even if his ketones haven't budged. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Thanks Saro. I didn't think was alone in this. Is Rohan still on the diet (or some form of it)? I'm sorry, I can't keep up --- I have to do mass delete alot. Is he doing well? Kathy On Mon, 02 Feb 2004 07:21:13 +0000 Jay writes: > We have observed the same. > > Saro > > kathy j irwin wrote: > > >We do..... and anytime has a seizure, his urine pH has risen > >(frustrating!!!) even if his ketones haven't budged. > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Thanks Saro. I didn't think was alone in this. Is Rohan still on the diet (or some form of it)? I'm sorry, I can't keep up --- I have to do mass delete alot. Is he doing well? Kathy On Mon, 02 Feb 2004 07:21:13 +0000 Jay writes: > We have observed the same. > > Saro > > kathy j irwin wrote: > > >We do..... and anytime has a seizure, his urine pH has risen > >(frustrating!!!) even if his ketones haven't budged. > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Thanks Saro. I didn't think was alone in this. Is Rohan still on the diet (or some form of it)? I'm sorry, I can't keep up --- I have to do mass delete alot. Is he doing well? Kathy On Mon, 02 Feb 2004 07:21:13 +0000 Jay writes: > We have observed the same. > > Saro > > kathy j irwin wrote: > > >We do..... and anytime has a seizure, his urine pH has risen > >(frustrating!!!) even if his ketones haven't budged. > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 , What you said makes sense. But, do you actually know what causes that bicarb to increase. (Also, when Jess is good, does bicarb stay right at 17, as far as you know, or does it go to 16, 15, perhaps 18?) Are there certain months that she's more prone to seizures... winter, summer, allergy season... have you been able to make a connection? What months are best for her? My thought on this... and I'm not questioning your experience, just thinking... what if she hits a " too-acidic-for-her " place (because obviously, you don't do ABGs constantly.... but, how often DO you generally check them?) and then her bicarb starts rising because she is then going to compensate for this abnormal state (which it is... it just happens to work for her much of the time). I'm also wondering about the onset of puberty. Even though it might not happen for a while, yet, those female hormones are probably starting to wake up a bit. It would be so great if you could narrow down and eventually pinpoint an event that might be moving the bicarb slightly upward before the seizures begin again. If no event were ever forthcoming, I would then guess that her system simply decides to finally compensate for the acidosis. Unfortunately, it's a lot of speculation. But, I'll bet if you hang in there, you will find the answer at some point. Because, like you said, you are THE expert on your daughter. Cammie > > My question would have to > > be...and I don't know, just a question. Could she be eventually > > getting too acidic and that's what's triggering that first seizure? > > ANd then, boom, all hell breaks loose?? It fits well with what's > > happening with the Topamax in other kids lately. > > I don't think so......because it tends to look to be the other way > around. When she is more acidic, she doesn't seize. She looks and seems > happy and healthy. Before the seizures start, she gets less acidic. She > only takes seizures in certain months of the year (another unique thing > about my little munchkin, she has quite a few unique properties that > quite frankly I could live without), so it could be a few weeks before > the seizures come or a few months before the seizures come her bicarb > will rise to above 17. Then when the month is right, BOOM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 No idea on this one right now... so Diamox and Sulthiame evidently don't cause cognitive problems?? We never took them, but we did take Topamax and that one surely does induce a zombie-like state. However, in all fairness, it got worse with Depakote for us... so I can't blame it all on the Topamax. I do credit the Topamax with the dubious honor of inducing the myoclonic and atonic seizures, though. My only thought would be that Topamax has dual routes for seizure inhibition, one being carbonic anhydrase inhibition and then something else. I read all about it when we were on it, but I've forgotten. Maybe I'll try to look it up again, just for fun??? Cammie > Cammie > One more question - if topamax is in the same class as the diamox and > the sulthiame, any ideas on why it seems to have profile for the > cognitive problems it causes? I call it dopomax and neuro calls it > toxicmax > Quote Link to comment Share on other sites More sharing options...
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