Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 You mentioned the " Diamox test " . I was told to go on Diamox, to see if it would alleviate some of my mito symptoms, by my MDA neuro doc, but my GP overrode it and said " try other things first " . My understanding is that it really packs a punch. They never told me to get a " Diamox test " though. Take care, RH > > > > > >But, I think > > at least one of the little girls who is on TPN and needs so much > fluids does > > have difficulty concentrating her urine and is considered to have > something > > similar to diabetes insipidus. One of the moms of one of the mito > kids on TPN > > is on this list so she may be able to comment more. > > That would be my . She has dysautonomia from birth, along > with renal tubular acidosis and nephrogenic diabetes insipidus. This > is what testing shows the kidney problems and may be worthwhile doing: > > check urine pH and serum bicarb at the same time. If bicarb shows > acidosis but urine is alkaline, it means kidneys are wasting bicarb. > > Urine specific gravity never goes below 1.010 even when she's > severely dehydrated. In that case, she stops peeing and goes into > acute tubular necrosis, which can lead to renal failure. Blood > creatinine becomes high and urine creat is non-detectable. > > Urine and serum lytes done at the same time. There is a ratio that > can be figured out to determine tubular losses. > > Urine and serum osmolality at the same time. If blood is > concentrated but urine is not, it's a problem. > > Diamox test was not done because it involves fasting. This test > involves taking a pill that lowers urine pH and seeing if your > kidneys comply. > > Dehydration test is done to look for DI. It involves restricting > fluids and checking urine for increasing specific gravity. It was > not done for because everyone felt it would be too dangerous. > > Ugh! This is how we deal with this: > NO fasting, keep blood sugar stable. dehydrates very quickly > when her sugar is even a little bit elevated. She's on TPN 24 hours > a day to keep her lytes stable and she only gets 4.8% dextrose. > > She gets 3 liters a day in IV nutrition and hydration and she only > weighs 30 lbs. She gets a ton of Na, K, and acetate (bicarb)in her > TPN and we titrate it according to her labs. She also takes bicitra, > a very safe, old drug that replaces wasted lytes that is probably the > most horrible tasting med on the market. J tubes are wonderful > things! We check labs weekly when she's well and up to a couple times > a day when she's sick. When she's sick she gets wild labs and we have > to do a lot of tweaking and nudging. It used to be much worse before > she was on TPN. > > We keep strict I and O. When pees more than she takes in we > have a formula for calculating how much we replace and what solution > we use, depending on what type of loss it is and what her symptoms > are. It is very dangerous to just give her fluids without checking > her numbers. Her kidneys get the message to get rid of fluid but it > can take days to get the message to conserve so we have to balance > fluids very carefully. and we never bolus with any fluid with > dextrose. > > Now that we know what we're doing to keep stable it's not bad > but I have no idea how we'd manage if she wasn't on TPN. > > Hope this helps! > Heidi, 's Mom > www.caringbridge.org/ma/heather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Hi, I just checked out your website and is a beautiful little girl. I was wondering, I'm sure you did, but did they check her thoroughly for autoimmune disease? My friend's son has lupus, and he is getting chemo for it because the antibodies are destroying his kidneys. Having both retinal and kidney problems makes me think there is some autoimmune going on. And if you or anyone else has an idea, is there potential for a kidney transplant for those with severe kidney problems, or are there too many issues for that? Take care, RH > > > > > >But, I think > > at least one of the little girls who is on TPN and needs so much > fluids does > > have difficulty concentrating her urine and is considered to have > something > > similar to diabetes insipidus. One of the moms of one of the mito > kids on TPN > > is on this list so she may be able to comment more. > > That would be my . She has dysautonomia from birth, along > with renal tubular acidosis and nephrogenic diabetes insipidus. This > is what testing shows the kidney problems and may be worthwhile doing: > > check urine pH and serum bicarb at the same time. If bicarb shows > acidosis but urine is alkaline, it means kidneys are wasting bicarb. > > Urine specific gravity never goes below 1.010 even when she's > severely dehydrated. In that case, she stops peeing and goes into > acute tubular necrosis, which can lead to renal failure. Blood > creatinine becomes high and urine creat is non-detectable. > > Urine and serum lytes done at the same time. There is a ratio that > can be figured out to determine tubular losses. > > Urine and serum osmolality at the same time. If blood is > concentrated but urine is not, it's a problem. > > Diamox test was not done because it involves fasting. This test > involves taking a pill that lowers urine pH and seeing if your > kidneys comply. > > Dehydration test is done to look for DI. It involves restricting > fluids and checking urine for increasing specific gravity. It was > not done for because everyone felt it would be too dangerous. > > Ugh! This is how we deal with this: > NO fasting, keep blood sugar stable. dehydrates very quickly > when her sugar is even a little bit elevated. She's on TPN 24 hours > a day to keep her lytes stable and she only gets 4.8% dextrose. > > She gets 3 liters a day in IV nutrition and hydration and she only > weighs 30 lbs. She gets a ton of Na, K, and acetate (bicarb)in her > TPN and we titrate it according to her labs. She also takes bicitra, > a very safe, old drug that replaces wasted lytes that is probably the > most horrible tasting med on the market. J tubes are wonderful > things! We check labs weekly when she's well and up to a couple times > a day when she's sick. When she's sick she gets wild labs and we have > to do a lot of tweaking and nudging. It used to be much worse before > she was on TPN. > > We keep strict I and O. When pees more than she takes in we > have a formula for calculating how much we replace and what solution > we use, depending on what type of loss it is and what her symptoms > are. It is very dangerous to just give her fluids without checking > her numbers. Her kidneys get the message to get rid of fluid but it > can take days to get the message to conserve so we have to balance > fluids very carefully. and we never bolus with any fluid with > dextrose. > > Now that we know what we're doing to keep stable it's not bad > but I have no idea how we'd manage if she wasn't on TPN. > > Hope this helps! > Heidi, 's Mom > www.caringbridge.org/ma/heather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 RH It would depend on how well the other body systems are working, but I do know of someone with mito who had a kidney transplant. laurie > > Reply-To: > Date: Wed, 23 Feb 2005 18:52:36 -0000 > To: > Subject: Re: need for hydration > > > > Hi, I just checked out your website and is a beautiful little > girl. I was wondering, I'm sure you did, but did they check her > thoroughly for autoimmune disease? My friend's son has lupus, and he > is getting chemo for it because the antibodies are destroying his > kidneys. Having both retinal and kidney problems makes me think > there is some autoimmune going on. > > And if you or anyone else has an idea, is there potential for a > kidney transplant for those with severe kidney problems, or are there > too many issues for that? > > Take care, > RH > > > >> >> >>> >>> But, I think >>> at least one of the little girls who is on TPN and needs so much >> fluids does >>> have difficulty concentrating her urine and is considered to > have >> something >>> similar to diabetes insipidus. One of the moms of one of the > mito >> kids on TPN >>> is on this list so she may be able to comment more. >> >> That would be my . She has dysautonomia from birth, along >> with renal tubular acidosis and nephrogenic diabetes insipidus. > This >> is what testing shows the kidney problems and may be worthwhile > doing: >> >> check urine pH and serum bicarb at the same time. If bicarb shows >> acidosis but urine is alkaline, it means kidneys are wasting bicarb. >> >> Urine specific gravity never goes below 1.010 even when she's >> severely dehydrated. In that case, she stops peeing and goes into >> acute tubular necrosis, which can lead to renal failure. Blood >> creatinine becomes high and urine creat is non-detectable. >> >> Urine and serum lytes done at the same time. There is a ratio that >> can be figured out to determine tubular losses. >> >> Urine and serum osmolality at the same time. If blood is >> concentrated but urine is not, it's a problem. >> >> Diamox test was not done because it involves fasting. This test >> involves taking a pill that lowers urine pH and seeing if your >> kidneys comply. >> >> Dehydration test is done to look for DI. It involves restricting >> fluids and checking urine for increasing specific gravity. It was >> not done for because everyone felt it would be too > dangerous. >> >> Ugh! This is how we deal with this: >> NO fasting, keep blood sugar stable. dehydrates very > quickly >> when her sugar is even a little bit elevated. She's on TPN 24 > hours >> a day to keep her lytes stable and she only gets 4.8% dextrose. >> >> She gets 3 liters a day in IV nutrition and hydration and she only >> weighs 30 lbs. She gets a ton of Na, K, and acetate (bicarb)in her >> TPN and we titrate it according to her labs. She also takes > bicitra, >> a very safe, old drug that replaces wasted lytes that is probably > the >> most horrible tasting med on the market. J tubes are wonderful >> things! We check labs weekly when she's well and up to a couple > times >> a day when she's sick. When she's sick she gets wild labs and we > have >> to do a lot of tweaking and nudging. It used to be much worse > before >> she was on TPN. >> >> We keep strict I and O. When pees more than she takes in > we >> have a formula for calculating how much we replace and what > solution >> we use, depending on what type of loss it is and what her symptoms >> are. It is very dangerous to just give her fluids without checking >> her numbers. Her kidneys get the message to get rid of fluid but it >> can take days to get the message to conserve so we have to balance >> fluids very carefully. and we never bolus with any fluid with >> dextrose. >> >> Now that we know what we're doing to keep stable it's not > bad >> but I have no idea how we'd manage if she wasn't on TPN. >> >> Hope this helps! >> Heidi, 's Mom >> www.caringbridge.org/ma/heather > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 I guess central DI is rare and related to other than the pancreas. Thinking of you as you recover. laurie > > Reply-To: > Date: Wed, 23 Feb 2005 08:56:01 -0600 > To: > > Subject: RE: need for hydration > > > Interesting, Laurie. I know I have an increased risk for diabetes for > several reasons and that I have some insulin resistance. Maybe its time to > pull out the glucometer again and do some finger sticks. When I can, will > read more about central diabetes insipitus. I am still recovering from the > Gamma Knife and probably will be for a while. > > > > Thanks much, > > B > > > > _____ > > From: Laureta Fitzgerald > Sent: Tuesday, February 22, 2005 10:24 PM > To: > Subject: Re: need for hydration > > > > Barbara > > Those are the primary symptoms of central diabetes insipitus. > > laurie > >> >> Reply-To: >> Date: Tue, 22 Feb 2005 20:08:50 -0600 >> To: > >> Subject: RE: need for hydration >> >> >> >> >> >> >> Interesting, Malissa. One of the problems I have is a very dilute urine. > We >> had checked aldosterone in a 24 hour collection a couple of years ago and > it >> was normal, but have not checked vasopressin or rennin. I get so thirsty >> through the night even with lots of fluids through the j-tube. However, > this >> is somewhat better when I limit carbohydrates, so I do suspect some >> connection with glucose/insulin. My veins are almost always collapsed and >> most medical people tell me this is due to dehydration. Blood pressure is >> also unstable. I do have one question. Did you check serum levels of these >> hormones or do a 24-hour urine collection? >> >> >> >> Thanks. B >> >> >> >> _____ >> >> From: Malilibear@... >> Sent: Tuesday, February 22, 2005 6:12 PM >> To: >> Subject: Re: need for hydration >> >> >> >> >> >> Hi Laurie, >> I need an extraordinarily high amount of IV fluids in my TPN. I get a > total >> >> of 3400 cc/day and am still getting thirsty even on that amount. My mito >> doctor has seen this over and over in other kids on TPN who also have > mito. >> For >> some reason, all of us just need a lot of fluids. Some of the really > little >> ones are needing 4-5 Liters a day to keep their autonomic systems stable >> and to >> stay well hydrated. >> >> I actually did have my vaspopressin, aldosterone and renin tested > recently. >> >> All look at hormonal control of fluids and they were all fine. But, I >> think >> at least one of the little girls who is on TPN and needs so much fluids >> does >> have difficulty concentrating her urine and is considered to have > something >> >> similar to diabetes insipidus. One of the moms of one of the mito kids on >> TPN >> is on this list so she may be able to comment more. >> Malisa >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 I saw 2 endocrinologists and 2 nephrologists 2003-4, but no one seemed overly concerned about the dilute urine other than implicating decreased kidney function. I think I will go over some of this stuff with my pcp and see what he recommends. Start there anyway. I don't want to go back to the KUMC endos. We have a new endo in town so I might try her. I even saw her as a patient during her residency and expect she might remember, as we had multiple contacts and I'm such an oddball patient. For me Gatorade and Pedialyte always kick off nausea due to sugar content. I have to find other ways to do electrolytes. Plain non-fat yogurt works pretty well and is 70% water to boot. My best solution so far, but I keep looking. Thanks for all the input. Much appreciated. B _____ From: ohgminion Sent: Wednesday, February 23, 2005 12:20 PM To: Subject: Re: need for hydration Yeah, I think so too. Certainly the dilute urine begs a visit to an endocrinologist. We had a discussion a while back about hydrating drinks, like Gatorade and Pedialyte. Could anything like that help someone with a J-G tube or getting IV fluids (I'm in the dark whether if you get IV fluids, you can still take stuff by mouth, I guess it depends)? Take care, RH > Barbara > > Those are the primary symptoms of central diabetes insipitus. > > laurie > > > From: " Barbara Seaman " > > Reply-To: > > Date: Tue, 22 Feb 2005 20:08:50 -0600 > > To: > > > Subject: RE: need for hydration > > > > > > > > > > > > > > Interesting, Malissa. One of the problems I have is a very dilute urine. We > > had checked aldosterone in a 24 hour collection a couple of years ago and it > > was normal, but have not checked vasopressin or rennin. I get so thirsty > > through the night even with lots of fluids through the j-tube. However, this > > is somewhat better when I limit carbohydrates, so I do suspect some > > connection with glucose/insulin. My veins are almost always collapsed and > > most medical people tell me this is due to dehydration. Blood pressure is > > also unstable. I do have one question. Did you check serum levels of these > > hormones or do a 24-hour urine collection? > > > > > > > > Thanks. B > > > > > > > > _____ > > > > From: Malilibear@a... [mailto:Malilibear@a...] > > Sent: Tuesday, February 22, 2005 6:12 PM > > To: > > Subject: Re: need for hydration > > > > > > > > > > > > Hi Laurie, > > I need an extraordinarily high amount of IV fluids in my TPN. I get a total > > > > of 3400 cc/day and am still getting thirsty even on that amount. My mito > > doctor has seen this over and over in other kids on TPN who also have mito. > > For > > some reason, all of us just need a lot of fluids. Some of the really little > > ones are needing 4-5 Liters a day to keep their autonomic systems stable > > and to > > stay well hydrated. > > > > I actually did have my vaspopressin, aldosterone and renin tested recently. > > > > All look at hormonal control of fluids and they were all fine. But, I > > think > > at least one of the little girls who is on TPN and needs so much fluids > > does > > have difficulty concentrating her urine and is considered to have something > > > > similar to diabetes insipidus. One of the moms of one of the mito kids on > > TPN > > is on this list so she may be able to comment more. > > Malisa > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Hmmmm..just what I need, one more rare disorder! Sheesh. Thanks for the thoughts! B _____ From: Laureta Fitzgerald Sent: Wednesday, February 23, 2005 1:14 PM To: Subject: Re: need for hydration I guess central DI is rare and related to other than the pancreas. Thinking of you as you recover. laurie > > Reply-To: > Date: Wed, 23 Feb 2005 08:56:01 -0600 > To: > > Subject: RE: need for hydration > > > Interesting, Laurie. I know I have an increased risk for diabetes for > several reasons and that I have some insulin resistance. Maybe its time to > pull out the glucometer again and do some finger sticks. When I can, will > read more about central diabetes insipitus. I am still recovering from the > Gamma Knife and probably will be for a while. > > > > Thanks much, > > B > > > > _____ > > From: Laureta Fitzgerald > Sent: Tuesday, February 22, 2005 10:24 PM > To: > Subject: Re: need for hydration > > > > Barbara > > Those are the primary symptoms of central diabetes insipitus. > > laurie > >> >> Reply-To: >> Date: Tue, 22 Feb 2005 20:08:50 -0600 >> To: > >> Subject: RE: need for hydration >> >> >> >> >> >> >> Interesting, Malissa. One of the problems I have is a very dilute urine. > We >> had checked aldosterone in a 24 hour collection a couple of years ago and > it >> was normal, but have not checked vasopressin or rennin. I get so thirsty >> through the night even with lots of fluids through the j-tube. However, > this >> is somewhat better when I limit carbohydrates, so I do suspect some >> connection with glucose/insulin. My veins are almost always collapsed and >> most medical people tell me this is due to dehydration. Blood pressure is >> also unstable. I do have one question. Did you check serum levels of these >> hormones or do a 24-hour urine collection? >> >> >> >> Thanks. B >> >> >> >> _____ >> >> From: Malilibear@... >> Sent: Tuesday, February 22, 2005 6:12 PM >> To: >> Subject: Re: need for hydration >> >> >> >> >> >> Hi Laurie, >> I need an extraordinarily high amount of IV fluids in my TPN. I get a > total >> >> of 3400 cc/day and am still getting thirsty even on that amount. My mito >> doctor has seen this over and over in other kids on TPN who also have > mito. >> For >> some reason, all of us just need a lot of fluids. Some of the really > little >> ones are needing 4-5 Liters a day to keep their autonomic systems stable >> and to >> stay well hydrated. >> >> I actually did have my vaspopressin, aldosterone and renin tested > recently. >> >> All look at hormonal control of fluids and they were all fine. But, I >> think >> at least one of the little girls who is on TPN and needs so much fluids >> does >> have difficulty concentrating her urine and is considered to have > something >> >> similar to diabetes insipidus. One of the moms of one of the mito kids on >> TPN >> is on this list so she may be able to comment more. >> Malisa >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Ah, a misnomer of sorts. Thanks. B _____ From: Malilibear@... Sent: Wednesday, February 23, 2005 2:38 PM To: Subject: Re: need for hydration In a message dated 2/23/2005 9:58:13 AM Eastern Standard Time, wheatchild@... writes: When I can, will read more about central diabetes insipitus. Diabetes insipidus is a confusing name. It's not related to diabetes at all and just has to do with the body's ability to concentrate urine. Central DI originates from the brain and nephrogenic (like what little has) originates in the kidneys. You would have thought they could have been more original when figuring out what to call it! Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 How did the gamma knife go? Barbara Seaman wrote: >Interesting, Laurie. I know I have an increased risk for diabetes for >several reasons and that I have some insulin resistance. Maybe its time to >pull out the glucometer again and do some finger sticks. When I can, will >read more about central diabetes insipitus. I am still recovering from the >Gamma Knife and probably will be for a while. > > > >Thanks much, > >B > > > > _____ > >From: Laureta Fitzgerald >Sent: Tuesday, February 22, 2005 10:24 PM >To: >Subject: Re: need for hydration > > > >Barbara > >Those are the primary symptoms of central diabetes insipitus. > >laurie > > > >> >>Reply-To: >>Date: Tue, 22 Feb 2005 20:08:50 -0600 >>To: > >>Subject: RE: need for hydration >> >> >> >> >> >> >>Interesting, Malissa. One of the problems I have is a very dilute urine. >> >> >We > > >>had checked aldosterone in a 24 hour collection a couple of years ago and >> >> >it > > >>was normal, but have not checked vasopressin or rennin. I get so thirsty >>through the night even with lots of fluids through the j-tube. However, >> >> >this > > >>is somewhat better when I limit carbohydrates, so I do suspect some >>connection with glucose/insulin. My veins are almost always collapsed and >>most medical people tell me this is due to dehydration. Blood pressure is >>also unstable. I do have one question. Did you check serum levels of these >>hormones or do a 24-hour urine collection? >> >> >> >>Thanks. B >> >> >> >>_____ >> >>From: Malilibear@... >>Sent: Tuesday, February 22, 2005 6:12 PM >>To: >>Subject: Re: need for hydration >> >> >> >> >> >>Hi Laurie, >>I need an extraordinarily high amount of IV fluids in my TPN. I get a >> >> >total > > >>of 3400 cc/day and am still getting thirsty even on that amount. My mito >>doctor has seen this over and over in other kids on TPN who also have >> >> >mito. > > >>For >>some reason, all of us just need a lot of fluids. Some of the really >> >> >little > > >>ones are needing 4-5 Liters a day to keep their autonomic systems stable >>and to >>stay well hydrated. >> >>I actually did have my vaspopressin, aldosterone and renin tested >> >> >recently. > > >>All look at hormonal control of fluids and they were all fine. But, I >>think >>at least one of the little girls who is on TPN and needs so much fluids >>does >>have difficulty concentrating her urine and is considered to have >> >> >something > > >>similar to diabetes insipidus. One of the moms of one of the mito kids on >>TPN >>is on this list so she may be able to comment more. >>Malisa >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 > >Hi RH 's immune system will be investigated next. I have abnormal autoimmune markers and both H's sibs have documented immune deficiencies but we haven't come across anything confirmed yet (just very very suspicious). 's kidney problems were present at birth and get worse with illness but return to baseline or just short of baseline after she gets better. My mother had very similar kidney issues and she's on dialysis. As far as transplant goes, it's a very tough issue for us. has severe multisystem involvement, and she has been losing cognitive function with illnesses. If she went into renal failure, we would probably choose peritoneal dialysis, take her home, and keep her comfortable. If her liver fails due to TPN, we'd do the same thing. We're open to any medical intervention that keeps her home. A transplant would move the whole family into the hospital. Thanks for taking a peek at ! Heidi > > > > Hi, I just checked out your website and is a beautiful little > > girl. I was wondering, I'm sure you did, but did they check her > > thoroughly for autoimmune disease? My friend's son has lupus, and he > > is getting chemo for it because the antibodies are destroying his > > kidneys. Having both retinal and kidney problems makes me think > > there is some autoimmune going on. > > > > And if you or anyone else has an idea, is there potential for a > > kidney transplant for those with severe kidney problems, or are there > > too many issues for that? > > > > Take care, > > RH > > > > > > > >> > >> > >>> > >>> But, I think > >>> at least one of the little girls who is on TPN and needs so much > >> fluids does > >>> have difficulty concentrating her urine and is considered to > > have > >> something > >>> similar to diabetes insipidus. One of the moms of one of the > > mito > >> kids on TPN > >>> is on this list so she may be able to comment more. > >> > >> That would be my . She has dysautonomia from birth, along > >> with renal tubular acidosis and nephrogenic diabetes insipidus. > > This > >> is what testing shows the kidney problems and may be worthwhile > > doing: > >> > >> check urine pH and serum bicarb at the same time. If bicarb shows > >> acidosis but urine is alkaline, it means kidneys are wasting bicarb. > >> > >> Urine specific gravity never goes below 1.010 even when she's > >> severely dehydrated. In that case, she stops peeing and goes into > >> acute tubular necrosis, which can lead to renal failure. Blood > >> creatinine becomes high and urine creat is non-detectable. > >> > >> Urine and serum lytes done at the same time. There is a ratio that > >> can be figured out to determine tubular losses. > >> > >> Urine and serum osmolality at the same time. If blood is > >> concentrated but urine is not, it's a problem. > >> > >> Diamox test was not done because it involves fasting. This test > >> involves taking a pill that lowers urine pH and seeing if your > >> kidneys comply. > >> > >> Dehydration test is done to look for DI. It involves restricting > >> fluids and checking urine for increasing specific gravity. It was > >> not done for because everyone felt it would be too > > dangerous. > >> > >> Ugh! This is how we deal with this: > >> NO fasting, keep blood sugar stable. dehydrates very > > quickly > >> when her sugar is even a little bit elevated. She's on TPN 24 > > hours > >> a day to keep her lytes stable and she only gets 4.8% dextrose. > >> > >> She gets 3 liters a day in IV nutrition and hydration and she only > >> weighs 30 lbs. She gets a ton of Na, K, and acetate (bicarb)in her > >> TPN and we titrate it according to her labs. She also takes > > bicitra, > >> a very safe, old drug that replaces wasted lytes that is probably > > the > >> most horrible tasting med on the market. J tubes are wonderful > >> things! We check labs weekly when she's well and up to a couple > > times > >> a day when she's sick. When she's sick she gets wild labs and we > > have > >> to do a lot of tweaking and nudging. It used to be much worse > > before > >> she was on TPN. > >> > >> We keep strict I and O. When pees more than she takes in > > we > >> have a formula for calculating how much we replace and what > > solution > >> we use, depending on what type of loss it is and what her symptoms > >> are. It is very dangerous to just give her fluids without checking > >> her numbers. Her kidneys get the message to get rid of fluid but it > >> can take days to get the message to conserve so we have to balance > >> fluids very carefully. and we never bolus with any fluid with > >> dextrose. > >> > >> Now that we know what we're doing to keep stable it's not > > bad > >> but I have no idea how we'd manage if she wasn't on TPN. > >> > >> Hope this helps! > >> Heidi, 's Mom > >> www.caringbridge.org/ma/heather > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Pedialyte doesn't have sugar, it has aspartame (although that makes some people sick). I am always on the look out for a " natural " alternative to Pedialyte and Gatorade, and the closest I've found is Emergen-C, which is a packet that makes a lemonade tasting drink. Interesting that the yogurt helps, do you take acidophilus as well? Take care, RH > > Barbara > > > > Those are the primary symptoms of central diabetes insipitus. > > > > laurie > > > > > From: " Barbara Seaman " > > > Reply-To: > > > Date: Tue, 22 Feb 2005 20:08:50 -0600 > > > To: > > > > Subject: RE: need for hydration > > > > > > > > > > > > > > > > > > > > > Interesting, Malissa. One of the problems I have is a very dilute > urine. We > > > had checked aldosterone in a 24 hour collection a couple of years > ago and it > > > was normal, but have not checked vasopressin or rennin. I get so > thirsty > > > through the night even with lots of fluids through the j-tube. > However, this > > > is somewhat better when I limit carbohydrates, so I do suspect > some > > > connection with glucose/insulin. My veins are almost always > collapsed and > > > most medical people tell me this is due to dehydration. Blood > pressure is > > > also unstable. I do have one question. Did you check serum levels > of these > > > hormones or do a 24-hour urine collection? > > > > > > > > > > > > Thanks. B > > > > > > > > > > > > _____ > > > > > > From: Malilibear@a... [mailto:Malilibear@a...] > > > Sent: Tuesday, February 22, 2005 6:12 PM > > > To: > > > Subject: Re: need for hydration > > > > > > > > > > > > > > > > > > Hi Laurie, > > > I need an extraordinarily high amount of IV fluids in my TPN. I > get a total > > > > > > of 3400 cc/day and am still getting thirsty even on that amount. > My mito > > > doctor has seen this over and over in other kids on TPN who also > have mito. > > > For > > > some reason, all of us just need a lot of fluids. Some of the > really little > > > ones are needing 4-5 Liters a day to keep their autonomic > systems stable > > > and to > > > stay well hydrated. > > > > > > I actually did have my vaspopressin, aldosterone and renin tested > recently. > > > > > > All look at hormonal control of fluids and they were all fine. > But, I > > > think > > > at least one of the little girls who is on TPN and needs so much > fluids > > > does > > > have difficulty concentrating her urine and is considered to > have something > > > > > > similar to diabetes insipidus. One of the moms of one of the > mito kids on > > > TPN > > > is on this list so she may be able to comment more. > > > Malisa > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 No, I don't take acidophilus. B _____ From: ohgminion Sent: Thursday, February 24, 2005 5:50 PM To: Subject: Re: need for hydration Pedialyte doesn't have sugar, it has aspartame (although that makes some people sick). I am always on the look out for a " natural " alternative to Pedialyte and Gatorade, and the closest I've found is Emergen-C, which is a packet that makes a lemonade tasting drink. Interesting that the yogurt helps, do you take acidophilus as well? Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 I was wondering because the good bacteria it provides can help with some intestinal and digestive issues, and minimize yeast infections. I always thought it was an " old wives' tale " that yogurt is " good for you " , and now I find if I miss my acidophilus capsules one day, I start getting yeast infection symptoms right away, and my intestinal track gets messed up. But some people recommend to just eat yogurt, because the acidophilus bacteria need dairy products to grow. That reminds me, I need to give our baby some acidophilus, as she is currently on antibiotics. Take care, RH > No, I don't take acidophilus. > > B > > > > _____ > > From: ohgminion [mailto:rakshasis@e...] > Sent: Thursday, February 24, 2005 5:50 PM > To: > Subject: Re: need for hydration > > > > > Pedialyte doesn't have sugar, it has aspartame (although that makes > some people sick). > > I am always on the look out for a " natural " alternative to Pedialyte > and Gatorade, and the closest I've found is Emergen-C, which is a > packet that makes a lemonade tasting drink. > > Interesting that the yogurt helps, do you take acidophilus as well? > > Take care, > RH > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 The plain Dannon yogurt I eat contains active acidophilus cultures and I eat 36-40 oz a day. Yes, it does help my gut, among other things. Good stuff. B _____ From: ohgminion Sent: Thursday, February 24, 2005 6:14 PM To: Subject: Re: need for hydration I was wondering because the good bacteria it provides can help with some intestinal and digestive issues, and minimize yeast infections. I always thought it was an " old wives' tale " that yogurt is " good for you " , and now I find if I miss my acidophilus capsules one day, I start getting yeast infection symptoms right away, and my intestinal track gets messed up. But some people recommend to just eat yogurt, because the acidophilus bacteria need dairy products to grow. That reminds me, I need to give our baby some acidophilus, as she is currently on antibiotics. Take care, RH > No, I don't take acidophilus. > > B > > > > _____ > > From: ohgminion [mailto:rakshasis@e...] > Sent: Thursday, February 24, 2005 5:50 PM > To: > Subject: Re: need for hydration > > > > > Pedialyte doesn't have sugar, it has aspartame (although that makes > some people sick). > > I am always on the look out for a " natural " alternative to Pedialyte > and Gatorade, and the closest I've found is Emergen-C, which is a > packet that makes a lemonade tasting drink. > > Interesting that the yogurt helps, do you take acidophilus as well? > > Take care, > RH > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Barbara, Have you considered making it? With the amount you eat, it would be better for you and cheaper too. My Mom had a Salton maker years ago and it was great. They make a different one now, but I am considering trying it. Amazon has it for a decent price. Here is a link:http://www.amazon.com/exec/obidos/tg/detail/-/B00004SUHY/qid=1109294815/sr=\ 8-1/ref=pd_csp_1/102-5815188-7547302?v=glance&s=home-garden&n=507846 Barbara Seaman wrote: >The plain Dannon yogurt I eat contains active acidophilus cultures and I eat >36-40 oz a day. Yes, it does help my gut, among other things. Good stuff. > >B > > > > _____ > >From: ohgminion >Sent: Thursday, February 24, 2005 6:14 PM >To: >Subject: Re: need for hydration > > > > >I was wondering because the good bacteria it provides can help with >some intestinal and digestive issues, and minimize yeast infections. >I always thought it was an " old wives' tale " that yogurt is " good for >you " , and now I find if I miss my acidophilus capsules one day, I >start getting yeast infection symptoms right away, and my intestinal >track gets messed up. > >But some people recommend to just eat yogurt, because the acidophilus >bacteria need dairy products to grow. That reminds me, I need to >give our baby some acidophilus, as she is currently on antibiotics. > >Take care, >RH > > > > >>No, I don't take acidophilus. >> >>B >> >> >> >> _____ >> >>From: ohgminion [mailto:rakshasis@e...] >>Sent: Thursday, February 24, 2005 5:50 PM >>To: >>Subject: Re: need for hydration >> >> >> >> >>Pedialyte doesn't have sugar, it has aspartame (although that makes >>some people sick). >> >>I am always on the look out for a " natural " alternative to >> >> >Pedialyte > > >>and Gatorade, and the closest I've found is Emergen-C, which is a >>packet that makes a lemonade tasting drink. >> >>Interesting that the yogurt helps, do you take acidophilus as well? >> >>Take care, >>RH >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Barbara, Have you considered making it? With the amount you eat, it would be better for you and cheaper too. My Mom had a Salton maker years ago and it was great. They make a different one now, but I am considering trying it. Amazon has it for a decent price. Here is a link:http://www.amazon.com/exec/obidos/tg/detail/-/B00004SUHY/qid=1109294815/sr=\ 8-1/ref=pd_csp_1/102-5815188-7547302?v=glance&s=home-garden&n=507846 Barbara Seaman wrote: >The plain Dannon yogurt I eat contains active acidophilus cultures and I eat >36-40 oz a day. Yes, it does help my gut, among other things. Good stuff. > >B > > > > _____ > >From: ohgminion >Sent: Thursday, February 24, 2005 6:14 PM >To: >Subject: Re: need for hydration > > > > >I was wondering because the good bacteria it provides can help with >some intestinal and digestive issues, and minimize yeast infections. >I always thought it was an " old wives' tale " that yogurt is " good for >you " , and now I find if I miss my acidophilus capsules one day, I >start getting yeast infection symptoms right away, and my intestinal >track gets messed up. > >But some people recommend to just eat yogurt, because the acidophilus >bacteria need dairy products to grow. That reminds me, I need to >give our baby some acidophilus, as she is currently on antibiotics. > >Take care, >RH > > > > >>No, I don't take acidophilus. >> >>B >> >> >> >> _____ >> >>From: ohgminion [mailto:rakshasis@e...] >>Sent: Thursday, February 24, 2005 5:50 PM >>To: >>Subject: Re: need for hydration >> >> >> >> >>Pedialyte doesn't have sugar, it has aspartame (although that makes >>some people sick). >> >>I am always on the look out for a " natural " alternative to >> >> >Pedialyte > > >>and Gatorade, and the closest I've found is Emergen-C, which is a >>packet that makes a lemonade tasting drink. >> >>Interesting that the yogurt helps, do you take acidophilus as well? >> >>Take care, >>RH >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Thanks, , very thoughtful..we'll check it out, but I'm not sure hubby will be interested in adding to his cooking chores! Given a choice, I suspect he would opt to buy rather than make, but I will ask. You never know. Sometimes he surprises me after 37 years. (And that's a good thing..) B _____ From: Sent: Thursday, February 24, 2005 7:27 PM To: Subject: Re: need for hydration Barbara, Have you considered making it? With the amount you eat, it would be better for you and cheaper too. My Mom had a Salton maker years ago and it was great. They make a different one now, but I am considering trying it. Amazon has it for a decent price. Here is a link:http://www.amazon.com/exec/obidos/tg/detail/-/B00004SUHY/qid=1109294815 /sr=8-1/ref=pd_csp_1/102-5815188-7547302?v=glance http://www.amazon.com/exec/obidos/tg/detail/-/B00004SUHY/qid=1109294815/sr= 8-1/ref=pd_csp_1/102-5815188-7547302?v=glance&s=home-garden&n=507846> &s=home-garden&n=507846 Barbara Seaman wrote: >The plain Dannon yogurt I eat contains active acidophilus cultures and I eat >36-40 oz a day. Yes, it does help my gut, among other things. Good stuff. > >B > > > > _____ > >From: ohgminion >Sent: Thursday, February 24, 2005 6:14 PM >To: >Subject: Re: need for hydration > > > > >I was wondering because the good bacteria it provides can help with >some intestinal and digestive issues, and minimize yeast infections. >I always thought it was an " old wives' tale " that yogurt is " good for >you " , and now I find if I miss my acidophilus capsules one day, I >start getting yeast infection symptoms right away, and my intestinal >track gets messed up. > >But some people recommend to just eat yogurt, because the acidophilus >bacteria need dairy products to grow. That reminds me, I need to >give our baby some acidophilus, as she is currently on antibiotics. > >Take care, >RH > > > > >>No, I don't take acidophilus. >> >>B >> >> >> >> _____ >> >>From: ohgminion [mailto:rakshasis@e...] >>Sent: Thursday, February 24, 2005 5:50 PM >>To: >>Subject: Re: need for hydration >> >> >> >> >>Pedialyte doesn't have sugar, it has aspartame (although that makes >>some people sick). >> >>I am always on the look out for a " natural " alternative to >> >> >Pedialyte > > >>and Gatorade, and the closest I've found is Emergen-C, which is a >>packet that makes a lemonade tasting drink. >> >>Interesting that the yogurt helps, do you take acidophilus as well? >> >>Take care, >>RH >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 That's great, more power to you. I can't tolerate that many carbs, but I understand the cultures help digestion, so maybe I'll try to add some to my diet. Take care, RH > > No, I don't take acidophilus. > > > > B > > > > > > > > _____ > > > > From: ohgminion [mailto:rakshasis@e...] > > Sent: Thursday, February 24, 2005 5:50 PM > > To: > > Subject: Re: need for hydration > > > > > > > > > > Pedialyte doesn't have sugar, it has aspartame (although that makes > > some people sick). > > > > I am always on the look out for a " natural " alternative to > Pedialyte > > and Gatorade, and the closest I've found is Emergen-C, which is a > > packet that makes a lemonade tasting drink. > > > > Interesting that the yogurt helps, do you take acidophilus as well? > > > > Take care, > > RH > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 That's great, more power to you. I can't tolerate that many carbs, but I understand the cultures help digestion, so maybe I'll try to add some to my diet. Take care, RH > > No, I don't take acidophilus. > > > > B > > > > > > > > _____ > > > > From: ohgminion [mailto:rakshasis@e...] > > Sent: Thursday, February 24, 2005 5:50 PM > > To: > > Subject: Re: need for hydration > > > > > > > > > > Pedialyte doesn't have sugar, it has aspartame (although that makes > > some people sick). > > > > I am always on the look out for a " natural " alternative to > Pedialyte > > and Gatorade, and the closest I've found is Emergen-C, which is a > > packet that makes a lemonade tasting drink. > > > > Interesting that the yogurt helps, do you take acidophilus as well? > > > > Take care, > > RH > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 RH You need to make sure that the yogurt has live cultures as some do not. They seem to be well labeled. laurie > > Reply-To: > Date: Fri, 25 Feb 2005 00:13:52 -0000 > To: > Subject: Re: need for hydration > > > > I was wondering because the good bacteria it provides can help with > some intestinal and digestive issues, and minimize yeast infections. > I always thought it was an " old wives' tale " that yogurt is " good for > you " , and now I find if I miss my acidophilus capsules one day, I > start getting yeast infection symptoms right away, and my intestinal > track gets messed up. > > But some people recommend to just eat yogurt, because the acidophilus > bacteria need dairy products to grow. That reminds me, I need to > give our baby some acidophilus, as she is currently on antibiotics. > > Take care, > RH > > >> No, I don't take acidophilus. >> >> B >> >> >> >> _____ >> >> From: ohgminion [mailto:rakshasis@e...] >> Sent: Thursday, February 24, 2005 5:50 PM >> To: >> Subject: Re: need for hydration >> >> >> >> >> Pedialyte doesn't have sugar, it has aspartame (although that makes >> some people sick). >> >> I am always on the look out for a " natural " alternative to > Pedialyte >> and Gatorade, and the closest I've found is Emergen-C, which is a >> packet that makes a lemonade tasting drink. >> >> Interesting that the yogurt helps, do you take acidophilus as well? >> >> Take care, >> RH >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 RH You need to make sure that the yogurt has live cultures as some do not. They seem to be well labeled. laurie > > Reply-To: > Date: Fri, 25 Feb 2005 00:13:52 -0000 > To: > Subject: Re: need for hydration > > > > I was wondering because the good bacteria it provides can help with > some intestinal and digestive issues, and minimize yeast infections. > I always thought it was an " old wives' tale " that yogurt is " good for > you " , and now I find if I miss my acidophilus capsules one day, I > start getting yeast infection symptoms right away, and my intestinal > track gets messed up. > > But some people recommend to just eat yogurt, because the acidophilus > bacteria need dairy products to grow. That reminds me, I need to > give our baby some acidophilus, as she is currently on antibiotics. > > Take care, > RH > > >> No, I don't take acidophilus. >> >> B >> >> >> >> _____ >> >> From: ohgminion [mailto:rakshasis@e...] >> Sent: Thursday, February 24, 2005 5:50 PM >> To: >> Subject: Re: need for hydration >> >> >> >> >> Pedialyte doesn't have sugar, it has aspartame (although that makes >> some people sick). >> >> I am always on the look out for a " natural " alternative to > Pedialyte >> and Gatorade, and the closest I've found is Emergen-C, which is a >> packet that makes a lemonade tasting drink. >> >> Interesting that the yogurt helps, do you take acidophilus as well? >> >> Take care, >> RH >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 I guess that's why I'm happy to stick with the high potency acidophilus capsules - they seem to work for me. The different yogurts, and whether or not they are " active " , confuses me. I buy Stonyfield Farms yogurt for the kids, but I don't personally like the taste of that brand. Take care, RH > >> No, I don't take acidophilus. > >> > >> B > >> > >> > >> > >> _____ > >> > >> From: ohgminion [mailto:rakshasis@e...] > >> Sent: Thursday, February 24, 2005 5:50 PM > >> To: > >> Subject: Re: need for hydration > >> > >> > >> > >> > >> Pedialyte doesn't have sugar, it has aspartame (although that makes > >> some people sick). > >> > >> I am always on the look out for a " natural " alternative to > > Pedialyte > >> and Gatorade, and the closest I've found is Emergen-C, which is a > >> packet that makes a lemonade tasting drink. > >> > >> Interesting that the yogurt helps, do you take acidophilus as well? > >> > >> Take care, > >> RH > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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