Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 I know, you're right. Testing is complicated right now for us by the fact that we had to temporarily leave our trusted doctor to switch to another physician group in order to get her covered for occupational therapy for her sensory integration disorder. I can get her tested for the oxalates by the same doctors who we switched to in order to get the OT referral, but that means I have to bring them into the loop on her medical care, and I'm not sure how receptive they're going to be to hearing all of this...but yes, it should be done. I'm kind of hoping the occupational therapy will be short term and that we can then switch back to our regular doctor, who is sympathetic and knows her history, and let him order the tests... Bonnie Bonnie, you need to have those tested so it's on record, they look at the urine under a microscope and they can tell by the shape if they are oxalate crystals then they send it off to a lab to confirm. It's as easy as that and then it's documented. How long ago was it that your child was on M? My physican says it's not the norm to have these coming out and he says it's from the M........Ethylene glycol is what causes these........If 50,000 people keep using this and not one person brings this up and they never look for it to bring it to their attention................They'll never know!! Also if anything happens to you child later like urinary reflux, they have something to go by.......this seems to be VERY common with MBonnie Juettner wrote: Well, in those days Miralax was the way we were trying to keep things moving...now, of course, we have better options. Though I'm getting frustrated again...we thought we were doing so well with the magnesium citrate in Kid's Calm, and now her colon seems to be shutting down again. She had one of her mega-poops a couple of days ago and hasn't gone since. I'm starting to wonder if I have the VSL#3 dosage right...does anyone know if VSL#3 can have a firming effect at times? I just wonder because one day I accidentally left a glass of soy milk sitting on the counter, with VSL#3 mixed into it, and a few hours later I saw that the milk had congealed into mostly curd. Well, if it turned liquid milk into a semi-solid...couldn't it have a similar effect in the colon? On the other hand, I think she needs the VSL#3 because she's dumping oxalates like crazy...even on nonpooping days, I can see what I think are oxalates in her urine. She uses a red training potty and it's very easy to see white crystals against the red surface of the potty. If you swirl them around they dissolve again. There's something about my DD that I've noticed before but have just started to wonder about. At night she produces drool that leaves a white residue around her mouth and white stains on her sheets. Has anyone seen anything like this? She's done it for forever. I used to think it was dried milk from nursing her at night, but she's been weaned for a good six months now (and doesn't drink soy milk before bed either, just water). I'm wondering if it could be a sign of having excessive calcium in her system. Of course I'll ask her doctor too...but I find often you guys have more experience with these kinds of things than most doctors do... Bonnie On 8/23/07, Jeanie Ward < dreamjeanie@...> wrote: That's not good because it had all that time to sit in the system and be absorbed, what they DON'T tell you is to make sure to KEEP THINGS MOVING so it's not absorbed............. Bonnie Juettner wrote: I don't know about PEG and calcium, but I'm curious about this overnight efficacy business. When my DD was on Miralax, it always took a good ten days of Miralax before she would actually have a bowel movement. In those days, we were constantly trying to wean her off of it, and would taper it down to nothing, think we were okay, and then she'd start one of her week or two-week long pooping boycotts, and we'd go back to Miralax. I don't think it ever produced any results for us in less than ten days. Bonnie On 8/22/07, tillyschmilly < emma.anderson@...> wrote: I emailed Tordoff about his work on injecting rats with PEG and the effects on calcium. This was his response. " There is at least one study in human adults (attached) that reports that administration of PEG for constipation does not alter levels of any of the electrolytes, including calcium. I suspect that this is not really a species difference. Instead, my rats received far larger doses of PEG than any humans would consume, and part of PEG's effect to chelate calcium is due to direct interaction with blood proteins. This cannot happen unless the PEG is injected so as to bypass the gut. " Sorry - I couldn't figure out how to copy the attachment - it is called 'Overnight efficacy of polyethylene glycol laxative' (2002) in the American Journal of Gastroenterology - authors - Di Palma, and Cleveland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Bonnie - That's interesting about the VSL#3 in the soy milk! I wouldn't think the bacteria themselves would necessarily firm up feces so as to contribute to constipation - particularly in light of the abstract someone recently posted of a study demonstrating that probiotics are useful in treating constipated children. Although I haven't looked to see which strain(s) were used in that study as compared to which strains are in the VSL#3. I don't know how many hours elapsed or how much soy milk was in the cup, but perhaps it was culturing in the soy milk? If there's any type of sugar in the soy milk, it might be that the bacteria were growing/culturing. That said, I did notice that there is corn starch in at least one of the versions of VSL#3 - whether it's enough to " curdle " /solidify the soy milk I wouldn't know. The other ingredient in the VSL#3 that might cause it to thicken is silicon dioxide. It's a food additive that can absorb water. Again, whether there's enough to gelatinize the soy milk is the question. Would corn starch and/or silicon dioxide do this in the intestines? No idea. Although my guess is that there's probably not enough of either in any given dose of the probiotic to make a dramatic change inside the gut. But, that's just a guess - haven't looked up anything on that. That said, I did find an interesting bit on silicon dioxide and other supplement/tablet additives. Many of us are giving our children several different types of supplements. This is just one person's (extremely long) account of his apparent troubles with too much silicon dioxide, talc, and magnesium stearate in the supplements he was taking, but I found it interesting that many of the symptoms he mentioned are common among our constipated children. Just a few of the symptoms he lists: - cognitive function problems, such as attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, frequently saying the wrong word - psychological problems such as depression, anxiety, personality changes, mood swings - sleep disturbance and non-restorative sleep - hair loss - frequent canker sores in the mouth - skin changes and/or rashes - severe muscular weakness - irritable bowel syndrome - uncomfortable urination I'm going to look at all the supplements I'm giving my son to see how many have silicon dioxide, talc, and magnesium stearate. I just wonder if there's a chance that these components might be making certain aspects of our children's constipation worse than they already were due to the amount of these ingredients in the supplements? (BTW - these additives are also commonly found in foods and candy - so, to get a real picture of how much our kids (and ourselves) are taking in, should check labels on everything they eat.) p.s. - My son also drools (not every night, but often) and it leaves a white residue as well. He's never taken Miralax. I always assumed it was just that he was in a deep sleep and his mouth gaped open. I think saliva generally can be salty, so I guessed it was the salt. Dehydration can make the saliva more 'salty'. As I imagine everyone here already knows, Miralax and magnesium both are osmotic laxatives that work to draw water into the intestines and create looser stools. So, I imagine if our children aren't drinking an abundance of fluids, their saliva could be more salty than 'normal' and that could leave the white residue. Just a hypothesis... > I emailed Tordoff about his work on injecting rats with PEG and > the effects on calcium. This was his response. > > " There is at least one study in human adults (attached) that reports > that administration of PEG for constipation does not alter levels of > any of the electrolytes, including calcium. I suspect that this is not > really a species difference. Instead, my rats received far larger > doses of PEG than any humans would consume, and part of PEG's effect to > chelate calcium is due to direct interaction with blood proteins. This > cannot happen unless the PEG is injected so as to bypass the gut. " > > Sorry - I couldn't figure out how to copy the attachment - it is > called 'Overnight efficacy of polyethylene glycol laxative' (2002) in > the American Journal of Gastroenterology - authors - Di Palma, > and Cleveland > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Sorry - meant to add the link to this guy's site that I mentioned in the previous post: http://www.ivanfraser.com/articles/health/sics.html It's very long - and I haven't read it in it's entirety - but skimmed enough to deduce that it was an intriguing concept and something to think more about. > > I emailed Tordoff about his work on injecting rats with PEG and > > the effects on calcium. This was his response. > > > > " There is at least one study in human adults (attached) that reports > > that administration of PEG for constipation does not alter levels of > > any of the electrolytes, including calcium. I suspect that this is not > > really a species difference. Instead, my rats received far larger > > doses of PEG than any humans would consume, and part of PEG's effect to > > chelate calcium is due to direct interaction with blood proteins. This > > cannot happen unless the PEG is injected so as to bypass the gut. " > > > > Sorry - I couldn't figure out how to copy the attachment - it is > > called 'Overnight efficacy of polyethylene glycol laxative' (2002) in > > the American Journal of Gastroenterology - authors - Di Palma, > > and Cleveland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 One the FDA adverse reactions there was a child that had something coming out that was niether urine nor the other, some bodily fluid it said. This was a cronic problem and that's what I think is going on.............Please read them, if we don't research what's been sent to the fda we can't really connect the things that our physicians have told us that it MUST BE COMING FROM SOMETHING ELSE..................This reminds me of a huge puzzel and all of us hold a piece and if we were all stanting in front of the White House demanding answers, they MIGHT consider, but not untill we become one. It's just to easy for THEM to continue.... child after child doctor after doctor, treating you like your AN ISOLATED CASE and the only one complaining of this while they get visit after visit ($) DON'T EVEN TRY TO TELL ME THAT YOU'RE THE ONLY ONE THAT'S BEEN COMPLAING ABOUT THIS, I'VE FOUND HUNDREDS MAYBE THOUSANDS AND I'M NOT A DOCTOR........... Jeanie jhud2 wrote: My dd produces that white drool on the sheets as well. She has been off miralax about 5 months and has shown high oxalates on testing. I've noticed her drooling a little out one side of her mouth also a little during the day and she is 12 years old and has never drooled. This worries me because it seems like a motor function problem. Any thoughts from the group? Kathy H. Re: calcium/PEG/VSL#3 and magnesium dosage Well, in those days Miralax was the way we were trying to keep things moving...now, of course, we have better options. Though I'm getting frustrated again...we thought we were doing so well with the magnesium citrate in Kid's Calm, and now her colon seems to be shutting down again. She had one of her mega-poops a couple of days ago and hasn't gone since. I'm starting to wonder if I have the VSL#3 dosage right...does anyone know if VSL#3 can have a firming effect at times? I just wonder because one day I accidentally left a glass of soy milk sitting on the counter, with VSL#3 mixed into it, and a few hours later I saw that the milk had congealed into mostly curd. Well, if it turned liquid milk into a semi-solid...couldn't it have a similar effect in the colon? On the other hand, I think she needs the VSL#3 because she's dumping oxalates like crazy...even on nonpooping days, I can see what I think are oxalates in her urine. She uses a red training potty and it's very easy to see white crystals against the red surface of the potty. If you swirl them around they dissolve again. There's something about my DD that I've noticed before but have just started to wonder about. At night she produces drool that leaves a white residue around her mouth and white stains on her sheets. Has anyone seen anything like this? She's done it for forever. I used to think it was dried milk from nursing her at night, but she's been weaned for a good six months now (and doesn't drink soy milk before bed either, just water). I'm wondering if it could be a sign of having excessive calcium in her system. Of course I'll ask her doctor too...but I find often you guys have more experience with these kinds of things than most doctors do... Bonnie On 8/23/07, Jeanie Ward <dreamjeaniesbcglobal (DOT) net> wrote: That's not good because it had all that time to sit in the system and be absorbed, what they DON'T tell you is to make sure to KEEP THINGS MOVING so it's not absorbed............. Bonnie Juettner <bjuettnergmail> wrote: I don't know about PEG and calcium, but I'm curious about this overnight efficacy business. When my DD was on Miralax, it always took a good ten days of Miralax before she would actually have a bowel movement. In those days, we were constantly trying to wean her off of it, and would taper it down to nothing, think we were okay, and then she'd start one of her week or two-week long pooping boycotts, and we'd go back to Miralax. I don't think it ever produced any results for us in less than ten days. Bonnie On 8/22/07, tillyschmilly < emma.andersonetoncollege (DOT) org.uk> wrote: I emailed Tordoff about his work on injecting rats with PEG and the effects on calcium. This was his response."There is at least one study in human adults (attached) that reports that administration of PEG for constipation does not alter levels of any of the electrolytes, including calcium. I suspect that this is not really a species difference. Instead, my rats received far larger doses of PEG than any humans would consume, and part of PEG's effect to chelate calcium is due to direct interaction with blood proteins. This cannot happen unless the PEG is injected so as to bypass the gut." Sorry - I couldn't figure out how to copy the attachment - it is called 'Overnight efficacy of polyethylene glycol laxative' (2002) in the American Journal of Gastroenterology - authors - Di Palma, and Cleveland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 This is the part I don't like, why should we put our children through all these awful tests to find out what this did..........this should of been known and established before using our children as an experiment.........THEY NEED TO FIGURE IT OUT and not on my child. Besides...........after all the agonizing tests they're just gonna say the same things.......it's not absorbed and must have come from something else.........I can't stress enough PLEASE CONTACT THE FDABonnie Juettner wrote: I know, you're right. Testing is complicated right now for us by the fact that we had to temporarily leave our trusted doctor to switch to another physician group in order to get her covered for occupational therapy for her sensory integration disorder. I can get her tested for the oxalates by the same doctors who we switched to in order to get the OT referral, but that means I have to bring them into the loop on her medical care, and I'm not sure how receptive they're going to be to hearing all of this...but yes, it should be done. I'm kind of hoping the occupational therapy will be short term and that we can then switch back to our regular doctor, who is sympathetic and knows her history, and let him order the tests...Bonnie On 8/24/07, Jeanie Ward <dreamjeaniesbcglobal (DOT) net> wrote: Bonnie, you need to have those tested so it's on record, they look at the urine under a microscope and they can tell by the shape if they are oxalate crystals then they send it off to a lab to confirm. It's as easy as that and then it's documented. How long ago was it that your child was on M? My physican says it's not the norm to have these coming out and he says it's from the M........Ethylene glycol is what causes these........If 50,000 people keep using this and not one person brings this up and they never look for it to bring it to their attention................They'll never know!! Also if anything happens to you child later like urinary reflux, they have something to go by.......this seems to be VERY common with M Bonnie Juettner <bjuettnergmail> wrote: Well, in those days Miralax was the way we were trying to keep things moving...now, of course, we have better options. Though I'm getting frustrated again...we thought we were doing so well with the magnesium citrate in Kid's Calm, and now her colon seems to be shutting down again. She had one of her mega-poops a couple of days ago and hasn't gone since. I'm starting to wonder if I have the VSL#3 dosage right...does anyone know if VSL#3 can have a firming effect at times? I just wonder because one day I accidentally left a glass of soy milk sitting on the counter, with VSL#3 mixed into it, and a few hours later I saw that the milk had congealed into mostly curd. Well, if it turned liquid milk into a semi-solid...couldn't it have a similar effect in the colon? On the other hand, I think she needs the VSL#3 because she's dumping oxalates like crazy...even on nonpooping days, I can see what I think are oxalates in her urine. She uses a red training potty and it's very easy to see white crystals against the red surface of the potty. If you swirl them around they dissolve again. There's something about my DD that I've noticed before but have just started to wonder about. At night she produces drool that leaves a white residue around her mouth and white stains on her sheets. Has anyone seen anything like this? She's done it for forever. I used to think it was dried milk from nursing her at night, but she's been weaned for a good six months now (and doesn't drink soy milk before bed either, just water). I'm wondering if it could be a sign of having excessive calcium in her system. Of course I'll ask her doctor too...but I find often you guys have more experience with these kinds of things than most doctors do... Bonnie On 8/23/07, Jeanie Ward < dreamjeaniesbcglobal (DOT) net> wrote: That's not good because it had all that time to sit in the system and be absorbed, what they DON'T tell you is to make sure to KEEP THINGS MOVING so it's not absorbed............. Bonnie Juettner <bjuettnergmail> wrote: I don't know about PEG and calcium, but I'm curious about this overnight efficacy business. When my DD was on Miralax, it always took a good ten days of Miralax before she would actually have a bowel movement. In those days, we were constantly trying to wean her off of it, and would taper it down to nothing, think we were okay, and then she'd start one of her week or two-week long pooping boycotts, and we'd go back to Miralax. I don't think it ever produced any results for us in less than ten days. Bonnie On 8/22/07, tillyschmilly < emma.andersonetoncollege (DOT) org.uk> wrote: I emailed Tordoff about his work on injecting rats with PEG and the effects on calcium. This was his response."There is at least one study in human adults (attached) that reports that administration of PEG for constipation does not alter levels of any of the electrolytes, including calcium. I suspect that this is not really a species difference. Instead, my rats received far larger doses of PEG than any humans would consume, and part of PEG's effect to chelate calcium is due to direct interaction with blood proteins. This cannot happen unless the PEG is injected so as to bypass the gut." Sorry - I couldn't figure out how to copy the attachment - it is called 'Overnight efficacy of polyethylene glycol laxative' (2002) in the American Journal of Gastroenterology - authors - Di Palma, and Cleveland Quote Link to comment Share on other sites More sharing options...
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