Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Get blood gasses done first, that will tell you how acidic he is, urine acidity is really.........rather irrelevant. What you really need is baseline blood gasses from when he was doing well. Anyway we have used diamox successfully for two years with diet to make jess more acidic, her body had learned how (presumably through her kidneys) to compensate for the diet's acidity and must have been either making more bicarb or peeing out less bicarb, which gave her higher blood levels of bicarb, hence less acidic. Follow that?? I have been working for past hour and a half and am developing a headache - major major storm day and have two kids hanging off me. Did I say MAJOR MAJOR storm day?? LOL Anyway after two years of diamox and diet her body has seemed to figure another way to counter acidity. We monitor kidneys carefully and they seem fine, I think just doing the job God intended a little too efficiently for our liking at the moment! Now we are looking at removing diamox and adding ospolot, not available in US or Canada but they get it from Australia. Same mechanism of action as diamox but much much stronger. Jess was very sensitive to diamox when we first added it to diet, even at small dose was too acidic at night, gagging and throwing up but fine in the morning. So we dropped dose a little and she was fine. When seizures returned after two years I upped diamox to original dose (which had been too much) and it did absoloutely nothing. But the post script to this is.......since upping carnosine last month she APPEARS to have returned to acidity. This month is seizure month and so far so good. Blood gasses on Feb 6 were quite acicic but she can be quite bouncy (I have renamed her Tigger) so I didn't think they would stick. So far so good, but I plan to retest next week. I know, that was long........but you asked kathy j irwin wrote: > (and all). Okay I need some pH help. has had ANOTHER > daytime seizure & I knew that he was gonna have it because his urine > pH > was 6. Arrrrrrrr. How in the heck am I suppose to keep his pH > acidic. > It used to stay acidic. Ketones are fine. Nothing has changed. Doc > keeps telling me that his kidneys are fine. My gut tells me that > something is going on with his kidneys. Any insightful advice? > Didn't I > read that Jess is on a drug to help keep her pH consistant? If > so....give me the scoop -- name, side effects, problems, etc. > Thanks! > kathy > > __________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Thanks . Me and the doc are going talk. Has Jess had problems with kidney stones? Just wondering because of her staying so acidic. K On Thu, 19 Feb 2004 11:33:21 -0400 mmc@... writes: > Get blood gasses done first, that will tell you how acidic he is, > urine > acidity is really.........rather irrelevant. > What you really need is baseline blood gasses from when he was > doing > well. Anyway we have used diamox successfully for two years with > diet > to make jess more acidic, her body had learned how (presumably > through > her kidneys) to compensate for the diet's acidity and must have > been > either making more bicarb or peeing out less bicarb, which gave her > higher blood levels of bicarb, hence less acidic. Follow that?? I > have > been working for past hour and a half and am developing a headache > - > major major storm day and have two kids hanging off me. Did I say > MAJOR > MAJOR storm day?? LOL > Anyway after two years of diamox and diet her body has seemed to > figure > another way to counter acidity. We monitor kidneys carefully and > they > seem fine, I think just doing the job God intended a little too > efficiently for our liking at the moment! > Now we are looking at removing diamox and adding ospolot, not > available > in US or Canada but they get it from Australia. Same mechanism of > action > as diamox but much much stronger. > Jess was very sensitive to diamox when we first added it to diet, > even > at small dose was too acidic at night, gagging and throwing up but > fine > in the morning. So we dropped dose a little and she was fine. When > seizures returned after two years I upped diamox to original dose > (which > had been too much) and it did absoloutely nothing. > But the post script to this is.......since upping carnosine last > month > she APPEARS to have returned to acidity. This month is seizure month > and > so far so good. Blood gasses on Feb 6 were quite acicic but she can > be > quite bouncy (I have renamed her Tigger) so I didn't think they > would > stick. So far so good, but I plan to retest next week. > I know, that was long........but you asked > > > kathy j irwin wrote: > > > (and all). Okay I need some pH help. has had > ANOTHER > > daytime seizure & I knew that he was gonna have it because his > urine > > pH > > was 6. Arrrrrrrr. How in the heck am I suppose to keep his pH > > acidic. > > It used to stay acidic. Ketones are fine. Nothing has changed. > Doc > > keeps telling me that his kidneys are fine. My gut tells me that > > something is going on with his kidneys. Any insightful advice? > > Didn't I > > read that Jess is on a drug to help keep her pH consistant? If > > so....give me the scoop -- name, side effects, problems, etc. > > Thanks! > > kathy > > > > __________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 kathy j irwin wrote: > Thanks . Me and the doc are going talk. Has Jess had > problems > with kidney stones? Just wondering because of her staying so acidic. We thought so at first because she started showing blood in urine. She does intermittent blood but actually haven't seen any in on the stix in over a year We do kidney ultrsounds twice a year and there had always been something in one corner that never moved, they couldn't say it if was stones or just shadowing. Did one a few weeks ago, its gone! Kidneys of normal size and volume and look perfectly normal Fingers and toes crossed, but I have put a lot of effort in to get optimum calcium, mag, Vit D,etc amounts in best forms, mostly for concern about bone issues with this, and thats doing good too. Moe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 kathy j irwin wrote: > Thanks . Me and the doc are going talk. Has Jess had > problems > with kidney stones? Just wondering because of her staying so acidic. We thought so at first because she started showing blood in urine. She does intermittent blood but actually haven't seen any in on the stix in over a year We do kidney ultrsounds twice a year and there had always been something in one corner that never moved, they couldn't say it if was stones or just shadowing. Did one a few weeks ago, its gone! Kidneys of normal size and volume and look perfectly normal Fingers and toes crossed, but I have put a lot of effort in to get optimum calcium, mag, Vit D,etc amounts in best forms, mostly for concern about bone issues with this, and thats doing good too. Moe Quote Link to comment Share on other sites More sharing options...
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