Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 , I just want to say you are a treasure. Although I don't always respond, I do feel the information and suggestions you give are so helpful, and I, along with others I am sure, really appreciate your willingness to share. Have a great day. Regards Sunny > Hi > > I was wondering if those of you who require frequent IV hydration > have had > your levels of vasopressin checked. During the night it popped into > my head > that a student of mine who had to have her pituitary glad removed, > had to > take DDAVP, along with all other hormone replacements to control the > loss of > fluid. > > laurie > > > > 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 22, 2005 Report Share Posted February 22, 2005 Amen. I am particularly interested in the vasopressin idea in relation to a group of symptoms I've had for the past 2 1/2 years. Will do a little research when I can and consider asking my doctor about it. Thanks much. B > Re: need for hydration > > > , > > I just want to say you are a treasure. Although I don't always > respond, I do feel the information and suggestions you give are so > helpful, and I, along with others I am sure, really appreciate your > willingness to share. > > Have a great day. > > Regards > > Sunny > > > > Hi > > > > I was wondering if those of you who require frequent IV hydration > > have had > > your levels of vasopressin checked. During the night it popped into > > my head > > that a student of mine who had to have her pituitary glad removed, > > had to > > take DDAVP, along with all other hormone replacements to control the > > loss of > > fluid. > > > > laurie > > > > > > > > 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 22, 2005 Report Share Posted February 22, 2005 Hi Laurie, receives IV Hydration once a month . I never thought to ask to have his vasopressin tested I am not trying to be ignorant but can I please ask you what is the vasopressin and how do you get tested for it. I have a feeling it is something to do with the autonomic system as he does have severe Dysautonomia/ POTS (Postural Orthostatic Tachycardia Syndrome). Thanks for your help I agree with Sunny and Barbara you are always here to listen and help thank you. Hugs, Donna K ---- Barbara Seaman wheatchild@...> wrote: > > Amen. I am particularly interested in the vasopressin idea in relation to a > group of symptoms I've had for the past 2 1/2 years. Will do a little > research when I can and consider asking my doctor about it. > > Thanks much. > B > > > Re: need for hydration > > > > > > , > > > > I just want to say you are a treasure. Although I don't always > > respond, I do feel the information and suggestions you give are so > > helpful, and I, along with others I am sure, really appreciate your > > willingness to share. > > > > Have a great day. > > > > Regards > > > > Sunny > > > > > > > Hi > > > > > > I was wondering if those of you who require frequent IV hydration > > > have had > > > your levels of vasopressin checked. During the night it popped into > > > my head > > > that a student of mine who had to have her pituitary glad removed, > > > had to > > > take DDAVP, along with all other hormone replacements to control the > > > loss of > > > fluid. > > > > > > laurie > > > > > > > > > > > > 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 22, 2005 Report Share Posted February 22, 2005 Sorry Laurie, I forgot to mention at one time an MRI showed that had a small tumor on his pituitary gland and now they are not sure so I will have them keep an eye on this. Also Dr. Grubb put him on a low dose of Florinef for the Dysautonomia/ POTS and he mentioned we could use the florinef or DDAVP as he feels they would maybe help him to retain some extra fluid. Here is a websight that is very good Rita is a friend of mine she is an RN and has POTS and 3 of her 4 children also do. www.dysautonomia-eduinfo.org/ Hugs, Donna K ---- Laureta Fitzgerald lfitzger@...> wrote: > > Hi > > I was wondering if those of you who require frequent IV hydration have had > your levels of vasopressin checked. During the night it popped into my head > that a student of mine who had to have her pituitary glad removed, had to > take DDAVP, along with all other hormone replacements to control the loss of > fluid. > > laurie > > > > > 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 22, 2005 Report Share Posted February 22, 2005 Sorry Laurie, I forgot to mention at one time an MRI showed that had a small tumor on his pituitary gland and now they are not sure so I will have them keep an eye on this. Also Dr. Grubb put him on a low dose of Florinef for the Dysautonomia/ POTS and he mentioned we could use the florinef or DDAVP as he feels they would maybe help him to retain some extra fluid. Here is a websight that is very good Rita is a friend of mine she is an RN and has POTS and 3 of her 4 children also do. www.dysautonomia-eduinfo.org/ Hugs, Donna K ---- Laureta Fitzgerald lfitzger@...> wrote: > > Hi > > I was wondering if those of you who require frequent IV hydration have had > your levels of vasopressin checked. During the night it popped into my head > that a student of mine who had to have her pituitary glad removed, had to > take DDAVP, along with all other hormone replacements to control the loss of > fluid. > > laurie > > > > > 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 22, 2005 Report Share Posted February 22, 2005 I haven't as far as I know of but thanks for passing along the info...see what retirement does to ya...gives you all this time to think...lol ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 I haven't as far as I know of but thanks for passing along the info...see what retirement does to ya...gives you all this time to think...lol ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 In a message dated 2/22/2005 8:27:55 AM Eastern Standard Time, lfitzger@... writes: I was wondering if those of you who require frequent IV hydration have had your levels of vasopressin checked. During the night it popped into my head that a student of mine who had to have her pituitary glad removed, had to take DDAVP, along with all other hormone replacements to control the loss of fluid. 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 22, 2005 Report Share Posted February 22, 2005 Too made that time is in the middle of the night. I have to get my body on a better schedule if possible. laurie > > Reply-To: > Date: Tue, 22 Feb 2005 15:23:08 -0000 > To: > Subject: Re: need for hydration > > > > I haven't as far as I know of but thanks for passing along the > info...see what retirement does to ya...gives you all this time to > think...lol ! > > bug > > > > > > > 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 22, 2005 Report Share Posted February 22, 2005 Too made that time is in the middle of the night. I have to get my body on a better schedule if possible. laurie > > Reply-To: > Date: Tue, 22 Feb 2005 15:23:08 -0000 > To: > Subject: Re: need for hydration > > > > I haven't as far as I know of but thanks for passing along the > info...see what retirement does to ya...gives you all this time to > think...lol ! > > bug > > > > > > > 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 22, 2005 Report Share Posted February 22, 2005 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 22, 2005 Report Share Posted February 22, 2005 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 22, 2005 Report Share Posted February 22, 2005 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 > >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 > >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 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 In a message dated 2/23/2005 11:26:58 AM Eastern Standard Time, mom2colemankidz3@... writes: 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: Hi Heidi, How is doing this week? Thanks for sharing all the nephrology tests that diagnosed her w/ DI. Very helpful info! Dr M in nephrology at Floating is really great. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 In a message dated 2/23/2005 1:28:31 PM Eastern Standard Time, rakshasis@... writes: 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)? Pedialyte is a great idea for those with tubes. Gatorade is okay, but like Barb said, the high sugar content may be hard for some to tolerate. I put pedialyte through my J-tube at night, along with the very small amount of feedings I get and I also mix all my meds in pedialyte instead of water. But, the amount I can tolerate is very small, so the majority of fluids I get IV. Some people on TPN can tolerate drinking, but I have alot of trouble with it, so when I get thirsty or dehydrated I get all my fluids IV. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 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 Heidi, Thanks for taking the time to share all these specifics. Wonderfully helpful. I will print, save and digest. I sure hope you get the rhabdo under control. That is nasty stuff. B _____ From: heidicoleman2002 Sent: Wednesday, February 23, 2005 5:58 AM To: Subject: Re: need for hydration > >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 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 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 Even easier, just buy some urine strips from the pharmacy, they have ones that test for protein, for ketones, and for glucose. Then you don't have to dread the glucometer. If the urine tests are positive, then maybe you should " get thee to an endocrinologist " . I was concerned about my son having diabetes, so I started taking his blood sugars, and was relieved that his have all been in the right ballpark, in fact, it looks like his diagnosis of reactive hypoglycemia may be wrong (but mine dx of that didn't appear to be wrong, I checked mine too). Take care, RH > 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 [mailto:lfitzger@j...] > 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 > > > 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 Even easier, just buy some urine strips from the pharmacy, they have ones that test for protein, for ketones, and for glucose. Then you don't have to dread the glucometer. If the urine tests are positive, then maybe you should " get thee to an endocrinologist " . I was concerned about my son having diabetes, so I started taking his blood sugars, and was relieved that his have all been in the right ballpark, in fact, it looks like his diagnosis of reactive hypoglycemia may be wrong (but mine dx of that didn't appear to be wrong, I checked mine too). Take care, RH > 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 [mailto:lfitzger@j...] > 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 > > > 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 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...
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