Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 hi there, this is sara again. wow, ya'll are so great with archives and passing much needed info. thanks for the advice on potty training so far, and yes, we have memorized elmo's potty time! has been on miralax for weeks per his pediatrician's recommendation for stool withholding and his potty training. He goes 6,7, and even 8 days without going even with laxatives, suppositories and unfortunately have been having to do enemas which is so traumatic for him and me. I will look into the nectars and other natural remedies and keep logging on to see what great tidbits ya'll have for me!!!! thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hello-- My daughvter is 3yr,4mo and has been on Miralax for 2 1/2 years. We potty trained at Christmas, and it was only possible b/c she increased her miralax dose. Before the increase, she was only going like every 3rd day. It was soft, but large in diameter. Our doc said that 'withholding' wouldn't get better until she had 1-2 soft , normal diameter stools per day. So he wanted me to play with the amount of Miralax and keep going up until she had one per day. He said to keep her in diapers until that time, b/c when they hold it to where the colon stretches out (large diameter), they lose sensation as well. and can't feel when they have to go. So , he said she needed to 'heal' for awhile. It didn't take long at all. I didn't have to go over 1 1/2 tablespoons of Miralax for her (she is still on that amount). Once she had one stool each day for a couple of weeks (he recommended I wait longer, but I could tell she could feel when she had to go) -- we took the potty training slow. The big success with her was getting candy when she went on the potty on top of the med increase.. Good luck-- sara <sendittomarble@...> wrote: hi there, this is sara again. wow, ya'll are so great with archives and passing much needed info. thanks for the advice on potty training so far, and yes, we have memorized elmo's potty time! has been on miralax for weeks per his pediatrician's recommendation for stool withholding and his potty training. He goes 6,7, and even 8 days without going even with laxatives, suppositories and unfortunately have been having to do enemas which is so traumatic for him and me. I will look into the nectars and other natural remedies and keep logging on to see what great tidbits ya'll have for me!!!! thanks --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 your daughter has been on Miralax since a year old?!! She's less then 3 and a half years old and on Miralax for 2 1/2 years? I would highly suggest a second opinion outside of your pediatrician with a pediatric gastroenterologist and share this. Perhaps a second opinion from a different pediatrician too! There isn't as much research on how prescription constipation medications affect infants or toddlers over years of use. We have one parent here who's young child was on prescription medications for constipation for years -most of us have not had this. You can archive for information about and and even though this situation is most severe -it's real. This child wasn't just another name in a grouplist -my son went to Summit Speech School with and Tanner and him appeared to present the exact same way as preschoolers. I was hysterical crying when I found out about what happened to in regards to this and thing is none of us know if it's because dosage kept going up over the years. But it should be documented -at least here it is. (two of her messages below) Thing is back then none of us talked about constipation in regards to apraxia at grouplists back then as it was considered off topic. But once I started this group and brought it up it was like the floodgates opened! I've shared many times about the nutritional prescription pediatric gastroenterologist Dr. shared with us for our son Tanner (short version is below). I know first hand how scary, frustrating and horrible constipation is in a preschool child - and want all to know you probably can help your child overcome this without medications -and if you can- why not try? Below is information about Miralax. " How long or often should Miralax be taken? It may be necessary to use this medication for 2 to 4 days before a bowel movement occurs. It is recommended that Miralax be taken for no longer than 2 weeks. Safety in children has not been established " http://www.gicare.com/pated/Miralax.htm And here's a message board just for those that have their child on miralax or glycolax: " This board originated as a board for those who have had, or their children have had, significant adverse reactions to, or adverse events after starting Miralax or Glycolax. A few examples would include the onset of tremors, tics, changes in personality, etc. I have been in contact with others who have had adverse reactions to this product, and decided to create a forum so that individual and families can post their experience here. I also encourage you to submit your experience (it can be done anonymously if that's what you prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is their link: http://www.fda.gov/medwatch/ " miralax/ ~~~~~~~~~~~archive from oldworldtile Re: miralax Please join the group miralax <miralax/?yguid=77953181> It's not a large group but there's a lot of sharing of information. I remember reading a post regarding a child with seizures - -they were told to keep the magnesium to 300mg per day. That amount with 3000 mg vit c might be enough to get your daughter off the stuff. I don't understand all the chemistry involved -- but the miralax that is absorbed is converted into oxalalic crystals -- which are very damaging to the body. My belief is that in the case of a damaged gut the % of PEG absorbed is much higher than they say. Also, Dana has a page on Dana's View - Miralax <http://www.danasview.net/miralax.htm> I am amazed at how well my son did after getting him off of the stuff. ~~~~~~~~~~~~end of archive from oldworldtile -start of archive about Dr. Adam's " prescription " I would highly suggest a second opinion outside of your pediatrician with a pediatric gastroenterologist and share this. And again -an archive about what the traditional gastroenterologist Dr. " prescribed " for Tanner which is working (just wish he didn't have to drink nectar every day!): " This also may have to do with some signaling problem or motor planning aspect. Not sure -but who cares when anyone just about anywhere can pick up pear nectar or Dole papaya fruit and gel bowls! This works -and we love Dr. !! > Today I took Tanner to see pediatric gastroenterologist Lawrence > MD from Palm Beach Florida for Tanner's problem with > constipation which we have been trying to help him with now for the > past 5 years or more with various MDs (Tanner is now 7) Up till now > nobody has wanted to put Tanner on medications -and since we've > moved we haven't taken Tanner to see his NJ/NY MDs. I highly > recommend Dr. if you are in Florida in that he took over an > hour with us -was excellent with Tanner (very funny) and was very > open to discussing off the wall theories on constipation in apraxic > children -a best kept secret even though it's known for autism. Dr. > has many patients with special needs -some with severe CP > whose parents have to blend fruits for their constipation that they > can put through their feeding tube. > > Here is a brief summery from the prescription he gave me: > > Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can > stand it -can mix with others but try plain nectar first) > * prune juice -can be mixed with orange juice (since most kids don't > like it) > > exotic fruits- figs, dates, apricot, papaya (papaya underlined > twice) (if he can stand it -like the nectars -these work wonders he > said) > > limit -banana, apple, rice, dairy > > Milk of Magnesia 2-3 tablespoons with glass of water any time he > skips 1 day. Works 4-8 hours. > > Behavior Modification -10 minutes daily -no distractions. Use > calendar stickers -every week reward for amount of BMs > 2/ week something small > 3-4 medium > 5-7 large reward > > Dr. said that there is a chance that the problem could be > motor planning -but he can't fix that -his goal is to get Tanner on > a schedule for a long period of time so that he starts going > automatically. He doesn't want me to use the Nature's Tea due to > the senna in it -said it can cause dependence in long term use, and > said that due to what I reported with Tanner's regression with too > much fiber not to use high fiber either. He said it is possible > that the fiber is cutting short the fatty acids in the gut. " ~~~~~~~~~~end of archive about Dr. -start of 's about Miralax may have nothing to do with her son's condition -but we all should be aware of the lack of research in this area. Thu Dec 11, 2003 8:19 am " D. Rothweiler " kdr2@... constipation Hi We seem to have so much in common. has had a constipation problem since he was born. He's been on Miralax for over a year now and it's the same thing as you, it makes it watery so he just has accidents all day long. It's very true that their rectums get stretched out so it's better to keep them flowing than let them get constipated. You don't want any stool to put pressure on the rectum wall. My frustration is that he can't control it and has accidents all day long. He tells me it just comes out too fast and he doesn't have time to get to the bathroom. Good luck! I hope it goes well for you. formerly in NJ, now in MA Mon Dec 15, 2003 9:26 pm " D. Rothweiler " kdr2@... constipation Hi W Thank you for your concern regarding my post about Miralax. I actually have an extenuating circumstance that I've been meaning to post to this group to see if anyone can relate to but this is all recent news to me and it's quite painful to talk about. I'll take this opportunity to ask anyway because someone here may be able to provide me with some info. My son was just diagnosed a few weeks ago with Pseudo Obstruction Syndrome. Basically, none of the nerves & muscles in his colon that are supposed to work together to move the stool through are working. He has zero motility in his colon. Because of this, the only way at all to get his stool to come out is by having it leak out watery. It's a pain to live with but the alternative is that he gets impacted. I've tried and tried to adjust the dosage and if it doesn't come out like water, it doesn't come out at all. My poor son has had every test in the book over the past 3 years in NJ. In June, we had to move to Massachusetts so I went into a specialist in Boston who is supposed to be internationally known, well published, etc.. and within one visit, he had it pegged that it was a motility problem. I have a lot of anger for my old dr. who had put my son through every test in the world and couldn't figure it out. My last visit with him before he left ended with him telling me that I had to get a lot of fiber into him and to get him to sit on the potty more often and that some kids were just chronically constipated. Meanwhile, my son's stomach is so distended that he looks about 8 months pregnant. Anyway, that's why I have to keep the Miralax so strong. My question to the group is: 1. Has anyone ever heard of or known someone with Pseudo Obstruction? 2. My son will have to have a Cecostomy for several years and I'm wondering again if anyone knows anyone with a child with a cecostomy so I can pick their brains? My surgeon told me it's basically the same type of port used as a feeding tube. If the cecostomy doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked out about the whole thing. Never in my wildest, worst dreams did I imagine that my son's constipation could be something so serious. I also hesitated to post this because I don't want to scare anyone out there who has a child with constipation. My new gastro. told me that the reason my old dr. didn't catch this is because it is quite rare. If I could suggest one thing though, it would be that if you have a child who is unresponsive to every conventional type of constipation remedy as my son is (nothing ever worked), just ask your dr. if he has ruled out a motility disorder. There are many different types (as I'm learning) and I wish I had known more before. Sorry so long but I've got a lot on my plate here. If anyone can share any info. with me on Pseudo Obstruction or cecostomy's, please let me know. Thanks in advance! in MA kdr2@... ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Thank you!! I will read through all of this stuff. I'm very interested. I have moved, so in the course of those years-- she's seen several pediatricians about it, they are all ok with it. And on my own, have taken her to 2 different Gastro docs. They both reassure me that it is perfectly fine. The one that had me increase was actually a GI doc. They even have handouts on it -- how it is a safe therapy in childhood. If there is anything else people know.. please tell. She is digestively perfectly fine and regular on it now. And perfectly potty trained. So it is a good time to start reading all this stuff on how to get her off. Thanks and keep sharing if you know anything else... kiddietalk <kiddietalk@...> wrote: your daughter has been on Miralax since a year old?!! She's less then 3 and a half years old and on Miralax for 2 1/2 years? I would highly suggest a second opinion outside of your pediatrician with a pediatric gastroenterologist and share this. Perhaps a second opinion from a different pediatrician too! There isn't as much research on how prescription constipation medications affect infants or toddlers over years of use. We have one parent here who's young child was on prescription medications for constipation for years -most of us have not had this. You can archive for information about and and even though this situation is most severe -it's real. This child wasn't just another name in a grouplist -my son went to Summit Speech School with and Tanner and him appeared to present the exact same way as preschoolers. I was hysterical crying when I found out about what happened to in regards to this and thing is none of us know if it's because dosage kept going up over the years. But it should be documented -at least here it is. (two of her messages below) Thing is back then none of us talked about constipation in regards to apraxia at grouplists back then as it was considered off topic. But once I started this group and brought it up it was like the floodgates opened! I've shared many times about the nutritional prescription pediatric gastroenterologist Dr. shared with us for our son Tanner (short version is below). I know first hand how scary, frustrating and horrible constipation is in a preschool child - and want all to know you probably can help your child overcome this without medications -and if you can- why not try? Below is information about Miralax. " How long or often should Miralax be taken? It may be necessary to use this medication for 2 to 4 days before a bowel movement occurs. It is recommended that Miralax be taken for no longer than 2 weeks. Safety in children has not been established " http://www.gicare.com/pated/Miralax.htm And here's a message board just for those that have their child on miralax or glycolax: " This board originated as a board for those who have had, or their children have had, significant adverse reactions to, or adverse events after starting Miralax or Glycolax. A few examples would include the onset of tremors, tics, changes in personality, etc. I have been in contact with others who have had adverse reactions to this product, and decided to create a forum so that individual and families can post their experience here. I also encourage you to submit your experience (it can be done anonymously if that's what you prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is their link: http://www.fda.gov/medwatch/ " miralax/ ~~~~~~~~~~~archive from oldworldtile Re: miralax Please join the group miralax <miralax/?yguid=77953181> It's not a large group but there's a lot of sharing of information. I remember reading a post regarding a child with seizures - -they were told to keep the magnesium to 300mg per day. That amount with 3000 mg vit c might be enough to get your daughter off the stuff. I don't understand all the chemistry involved -- but the miralax that is absorbed is converted into oxalalic crystals -- which are very damaging to the body. My belief is that in the case of a damaged gut the % of PEG absorbed is much higher than they say. Also, Dana has a page on Dana's View - Miralax <http://www.danasview.net/miralax.htm> I am amazed at how well my son did after getting him off of the stuff. ~~~~~~~~~~~~end of archive from oldworldtile -start of archive about Dr. Adam's " prescription " I would highly suggest a second opinion outside of your pediatrician with a pediatric gastroenterologist and share this. And again -an archive about what the traditional gastroenterologist Dr. " prescribed " for Tanner which is working (just wish he didn't have to drink nectar every day!): " This also may have to do with some signaling problem or motor planning aspect. Not sure -but who cares when anyone just about anywhere can pick up pear nectar or Dole papaya fruit and gel bowls! This works -and we love Dr. !! > Today I took Tanner to see pediatric gastroenterologist Lawrence > MD from Palm Beach Florida for Tanner's problem with > constipation which we have been trying to help him with now for the > past 5 years or more with various MDs (Tanner is now 7) Up till now > nobody has wanted to put Tanner on medications -and since we've > moved we haven't taken Tanner to see his NJ/NY MDs. I highly > recommend Dr. if you are in Florida in that he took over an > hour with us -was excellent with Tanner (very funny) and was very > open to discussing off the wall theories on constipation in apraxic > children -a best kept secret even though it's known for autism. Dr. > has many patients with special needs -some with severe CP > whose parents have to blend fruits for their constipation that they > can put through their feeding tube. > > Here is a brief summery from the prescription he gave me: > > Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can > stand it -can mix with others but try plain nectar first) > * prune juice -can be mixed with orange juice (since most kids don't > like it) > > exotic fruits- figs, dates, apricot, papaya (papaya underlined > twice) (if he can stand it -like the nectars -these work wonders he > said) > > limit -banana, apple, rice, dairy > > Milk of Magnesia 2-3 tablespoons with glass of water any time he > skips 1 day. Works 4-8 hours. > > Behavior Modification -10 minutes daily -no distractions. Use > calendar stickers -every week reward for amount of BMs > 2/ week something small > 3-4 medium > 5-7 large reward > > Dr. said that there is a chance that the problem could be > motor planning -but he can't fix that -his goal is to get Tanner on > a schedule for a long period of time so that he starts going > automatically. He doesn't want me to use the Nature's Tea due to > the senna in it -said it can cause dependence in long term use, and > said that due to what I reported with Tanner's regression with too > much fiber not to use high fiber either. He said it is possible > that the fiber is cutting short the fatty acids in the gut. " ~~~~~~~~~~end of archive about Dr. -start of 's about Miralax may have nothing to do with her son's condition -but we all should be aware of the lack of research in this area. Thu Dec 11, 2003 8:19 am " D. Rothweiler " kdr2@... constipation Hi We seem to have so much in common. has had a constipation problem since he was born. He's been on Miralax for over a year now and it's the same thing as you, it makes it watery so he just has accidents all day long. It's very true that their rectums get stretched out so it's better to keep them flowing than let them get constipated. You don't want any stool to put pressure on the rectum wall. My frustration is that he can't control it and has accidents all day long. He tells me it just comes out too fast and he doesn't have time to get to the bathroom. Good luck! I hope it goes well for you. formerly in NJ, now in MA Mon Dec 15, 2003 9:26 pm " D. Rothweiler " kdr2@... constipation Hi W Thank you for your concern regarding my post about Miralax. I actually have an extenuating circumstance that I've been meaning to post to this group to see if anyone can relate to but this is all recent news to me and it's quite painful to talk about. I'll take this opportunity to ask anyway because someone here may be able to provide me with some info. My son was just diagnosed a few weeks ago with Pseudo Obstruction Syndrome. Basically, none of the nerves & muscles in his colon that are supposed to work together to move the stool through are working. He has zero motility in his colon. Because of this, the only way at all to get his stool to come out is by having it leak out watery. It's a pain to live with but the alternative is that he gets impacted. I've tried and tried to adjust the dosage and if it doesn't come out like water, it doesn't come out at all. My poor son has had every test in the book over the past 3 years in NJ. In June, we had to move to Massachusetts so I went into a specialist in Boston who is supposed to be internationally known, well published, etc.. and within one visit, he had it pegged that it was a motility problem. I have a lot of anger for my old dr. who had put my son through every test in the world and couldn't figure it out. My last visit with him before he left ended with him telling me that I had to get a lot of fiber into him and to get him to sit on the potty more often and that some kids were just chronically constipated. Meanwhile, my son's stomach is so distended that he looks about 8 months pregnant. Anyway, that's why I have to keep the Miralax so strong. My question to the group is: 1. Has anyone ever heard of or known someone with Pseudo Obstruction? 2. My son will have to have a Cecostomy for several years and I'm wondering again if anyone knows anyone with a child with a cecostomy so I can pick their brains? My surgeon told me it's basically the same type of port used as a feeding tube. If the cecostomy doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked out about the whole thing. Never in my wildest, worst dreams did I imagine that my son's constipation could be something so serious. I also hesitated to post this because I don't want to scare anyone out there who has a child with constipation. My new gastro. told me that the reason my old dr. didn't catch this is because it is quite rare. If I could suggest one thing though, it would be that if you have a child who is unresponsive to every conventional type of constipation remedy as my son is (nothing ever worked), just ask your dr. if he has ruled out a motility disorder. There are many different types (as I'm learning) and I wish I had known more before. Sorry so long but I've got a lot on my plate here. If anyone can share any info. with me on Pseudo Obstruction or cecostomy's, please let me know. Thanks in advance! in MA kdr2@... ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 I thought miralax had antifreeze in it. > > your daughter has been on Miralax since a year old?!! She's > less then 3 and a half years old and on Miralax for 2 1/2 years? > > I would highly suggest a second opinion outside of your pediatrician > with a pediatric gastroenterologist and share this. Perhaps a second > opinion from a different pediatrician too! > > There isn't as much research on how prescription constipation > medications affect infants or toddlers over years of use. We have > one parent here who's young child was on prescription medications for > constipation for years -most of us have not had this. You can > archive for information about and and even though this > situation is most severe -it's real. This child wasn't just another > name in a grouplist -my son went to Summit Speech School with > and Tanner and him appeared to present the exact same way as > preschoolers. I was hysterical crying when I found out about what > happened to in regards to this and thing is none of us know if > it's because dosage kept going up over the years. But it should be > documented -at least here it is. (two of her messages below) > > Thing is back then none of us talked about constipation in regards to > apraxia at grouplists back then as it was considered off topic. But > once I started this group and brought it up it was like the > floodgates opened! I've shared many times about the nutritional > prescription pediatric gastroenterologist Dr. shared with us > for our son Tanner (short version is below). I know first hand how > scary, frustrating and horrible constipation is in a preschool child - > and want all to know you probably can help your child overcome this > without medications -and if you can- why not try? Below is > information about Miralax. > > " How long or often should Miralax be taken? > It may be necessary to use this medication for 2 to 4 days before a > bowel movement occurs. It is recommended that Miralax be taken for no > longer than 2 weeks. > Safety in children has not been established " > http://www.gicare.com/pated/Miralax.htm > > And here's a message board just for those that have their child on > miralax or glycolax: > > " This board originated as a board for those who have had, or their > children have had, significant adverse reactions to, or adverse > events after starting Miralax or Glycolax. A few examples would > include the onset of tremors, tics, changes in personality, etc. I > have been in contact with others who have had adverse reactions to > this product, and decided to create a forum so that individual and > families can post their experience here. I also encourage you to > submit your experience (it can be done anonymously if that's what you > prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is > their link: > http://www.fda.gov/medwatch/ " > miralax/ > > ~~~~~~~~~~~archive from oldworldtile > Re: miralax > > > > Please join the group miralax > <miralax/?yguid=77953181> It's not a > large group but there's a lot of sharing of information. I remember > reading a post regarding a child with seizures - -they were told to > keep > the magnesium to 300mg per day. That amount with 3000 mg vit c might > be > enough to get your daughter off the stuff. I don't understand all the > chemistry involved -- but the miralax that is absorbed is converted > into > oxalalic crystals -- which are very damaging to the body. My belief is > that in the case of a damaged gut the % of PEG absorbed is much higher > than they say. Also, Dana has a page on Dana's View - Miralax > <http://www.danasview.net/miralax.htm> > > I am amazed at how well my son did after getting him off of the stuff. > > ~~~~~~~~~~~~end of archive from oldworldtile -start of archive about > Dr. Adam's " prescription " > > > > I would highly suggest a second opinion outside of your pediatrician > with a pediatric gastroenterologist and share this. > > And again -an archive about what the traditional gastroenterologist > Dr. " prescribed " for Tanner which is working (just wish he > didn't have to drink nectar every day!): > > " This also may have to do with some signaling problem or motor > planning aspect. Not sure -but who cares when anyone just about > anywhere can pick up pear nectar or Dole papaya fruit and gel > bowls! This works -and we love Dr. !! > > > Today I took Tanner to see pediatric gastroenterologist Lawrence > > MD from Palm Beach Florida for Tanner's problem with > > constipation which we have been trying to help him with now for > the > > past 5 years or more with various MDs (Tanner is now 7) Up till > now > > nobody has wanted to put Tanner on medications -and since we've > > moved we haven't taken Tanner to see his NJ/NY MDs. I highly > > recommend Dr. if you are in Florida in that he took over an > > hour with us -was excellent with Tanner (very funny) and was very > > open to discussing off the wall theories on constipation in > apraxic > > children -a best kept secret even though it's known for autism. > Dr. > > has many patients with special needs -some with severe CP > > whose parents have to blend fruits for their constipation that > they > > can put through their feeding tube. > > > > Here is a brief summery from the prescription he gave me: > > > > Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can > > stand it -can mix with others but try plain nectar first) > > * prune juice -can be mixed with orange juice (since most kids > don't > > like it) > > > > exotic fruits- figs, dates, apricot, papaya (papaya underlined > > twice) (if he can stand it -like the nectars -these work wonders > he > > said) > > > > limit -banana, apple, rice, dairy > > > > Milk of Magnesia 2-3 tablespoons with glass of water any time he > > skips 1 day. Works 4-8 hours. > > > > Behavior Modification -10 minutes daily -no distractions. Use > > calendar stickers -every week reward for amount of BMs > > 2/ week something small > > 3-4 medium > > 5-7 large reward > > > > Dr. said that there is a chance that the problem could be > > motor planning -but he can't fix that -his goal is to get Tanner > on > > a schedule for a long period of time so that he starts going > > automatically. He doesn't want me to use the Nature's Tea due to > > the senna in it -said it can cause dependence in long term use, > and > > said that due to what I reported with Tanner's regression with too > > much fiber not to use high fiber either. He said it is possible > > that the fiber is cutting short the fatty acids in the gut. " > > ~~~~~~~~~~end of archive about Dr. -start of 's about Miralax may have nothing to do with her son's condition -but we all should be aware of the lack of research in this area. > > Thu Dec 11, 2003 8:19 am > " D. Rothweiler " kdr2@... > constipation > > > Hi > We seem to have so much in common. > > has had a constipation problem since he was born. He's been on > Miralax for over a year now and it's the same thing as you, it makes it > watery so he just has accidents all day long. It's very true that their > rectums get stretched out so it's better to keep them flowing than let them > get constipated. You don't want any stool to put pressure on the rectum > wall. My frustration is that he can't control it and has accidents all day > long. He tells me it just comes out too fast and he doesn't have time to > get to the bathroom. > > Good luck! I hope it goes well for you. > > > formerly in NJ, now in MA > > Mon Dec 15, 2003 9:26 pm > " D. Rothweiler " kdr2@... > constipation > > > Hi W > Thank you for your concern regarding my post about Miralax. I actually have > an extenuating circumstance that I've been meaning to post to this group to > see if anyone can relate to but this is all recent news to me and it's quite > painful to talk about. I'll take this opportunity to ask anyway because > someone here may be able to provide me with some info. > > My son was just diagnosed a few weeks ago with Pseudo Obstruction > Syndrome. Basically, none of the nerves & muscles in his colon that are > supposed to work together to move the stool through are working. He has > zero motility in his colon. Because of this, the only way at all to get his > stool to come out is by having it leak out watery. It's a pain to live with > but the alternative is that he gets impacted. I've tried and tried to > adjust the dosage and if it doesn't come out like water, it doesn't come out > at all. My poor son has had every test in the book over the past 3 years in > NJ. In June, we had to move to Massachusetts so I went into a specialist in > Boston who is supposed to be internationally known, well published, etc.. > and within one visit, he had it pegged that it was a motility problem. I > have a lot of anger for my old dr. who had put my son through every test in > the world and couldn't figure it out. My last visit with him before he left > ended with him telling me that I had to get a lot of fiber into him and to > get him to sit on the potty more often and that some kids were just > chronically constipated. Meanwhile, my son's stomach is so distended that > he looks about 8 months pregnant. Anyway, that's why I have to keep the > Miralax so strong. > > My question to the group is: 1. Has anyone ever heard of or known someone > with Pseudo Obstruction? 2. My son will have to have a Cecostomy for > several years and I'm wondering again if anyone knows anyone with a child > with a cecostomy so I can pick their brains? My surgeon told me it's > basically the same type of port used as a feeding tube. If the cecostomy > doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked > out about the whole thing. Never in my wildest, worst dreams did I imagine > that my son's constipation could be something so serious. I also hesitated > to post this because I don't want to scare anyone out there who has a child > with constipation. My new gastro. told me that the reason my old dr. didn't > catch this is because it is quite rare. If I could suggest one thing > though, it would be that if you have a child who is unresponsive to every > conventional type of constipation remedy as my son is (nothing ever worked), > just ask your dr. if he has ruled out a motility disorder. There are many > different types (as I'm learning) and I wish I had known more before. > > Sorry so long but I've got a lot on my plate here. If anyone can share any > info. with me on Pseudo Obstruction or cecostomy's, please let me know. > Thanks in advance! > > in MA > kdr2@... > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 The magnesium citrate sounds interesting. I know that in Fiber Choice, a chewable pill that has inulin (dietary fiber found in veggies and fruit), magnesium stearate is listed as an ingredient. Anyone know the difference? Thanks, Carolyn In a message dated 3/12/2008 5:43:33 P.M. Eastern Daylight Time, jkmjancso@... writes: My son was severly constipated since infant and got the Miralax when he was 20 months old. I only gave him 1/2 dose and he did have a BM almost every day. But then we went to see another doctor and he recommended to slowly reduce Miralax and give him Magnesium Citrate. This is a natural laxitive kind and doesn't hurt the kids. Miralax isn't, it has the chemical structure as the antifreeze and the intestine is not suppose to absorb it, but I read that in many case it does get absorb a little. So I bought it in Whole Foods stores and after a week or so he was getting normal BMs every day and he was off Miralax in two weeks. Now he only gets 1 capsule (which I grind and mix in with food). He could take 2 a day if needed, he is now 26 months old. Also give a lot of (1000mg) vitamic C, that makes the BM watery. Good luck. > your daughter has been on Miralax since a year old?!! She's > less then 3 and a half years old and on Miralax for 2 1/2 years? > > I would highly suggest a second opinion outside of your pediatrician > with a pediatric gastroenterologist and share this. Perhaps a second > opinion from a different pediatrician too! > > There isn't as much research on how prescription constipation > medications affect infants or toddlers over years of use. We have > one parent here who's young child was on prescription medications for > constipation for years -most of us have not had this. You can > archive for information about and and even though this > situation is most severe -it's real. This child wasn't just another > name in a grouplist -my son went to Summit Speech School with > and Tanner and him appeared to present the exact same way as > preschoolers. I was hysterical crying when I found out about what > happened to in regards to this and thing is none of us know if > it's because dosage kept going up over the years. But it should be > documented -at least here it is. (two of her messages below) > > Thing is back then none of us talked about constipation in regards to > apraxia at grouplists back then as it was considered off topic. But > once I started this group and brought it up it was like the > floodgates opened! I've shared many times about the nutritional > prescription pediatric gastroenterologist Dr. shared with us > for our son Tanner (short version is below). I know first hand how > scary, frustrating and horrible constipation is in a preschool child - > and want all to know you probably can help your child overcome this > without medications -and if you can- why not try? Below is > information about Miralax. > > " How long or often should Miralax be taken? > It may be necessary to use this medication for 2 to 4 days before a > bowel movement occurs. It is recommended that Miralax be taken for no > longer than 2 weeks. > Safety in children has not been established " > _http://www.gicare.http://wwwhttp://www._ (http://www.gicare.com/pated/Miralax.htm) > > And here's a message board just for those that have their child on > miralax or glycolax: > > " This board originated as a board for those who have had, or their > children have had, significant adverse reactions to, or adverse > events after starting Miralax or Glycolax. A few examples would > include the onset of tremors, tics, changes in personality, etc. I > have been in contact with others who have had adverse reactions to > this product, and decided to create a forum so that individual and > families can post their experience here. I also encourage you to > submit your experience (it can be done anonymously if that's what you > prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is > their link: > _http://www.fda.http://www.fd_ (http://www.fda.gov/medwatch/) " > _http://health.http://healthhttp://heahttp://h_ (miralax/) > **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 My son was severly constipated since infant and got the Miralax when he was 20 months old. I only gave him 1/2 dose and he did have a BM almost every day. But then we went to see another doctor and he recommended to slowly reduce Miralax and give him Magnesium Citrate. This is a natural laxitive kind and doesn't hurt the kids. Miralax isn't, it has the chemical structure as the antifreeze and the intestine is not suppose to absorb it, but I read that in many case it does get absorb a little. So I bought it in Whole Foods stores and after a week or so he was getting normal BMs every day and he was off Miralax in two weeks. Now he only gets 1 capsule (which I grind and mix in with food). He could take 2 a day if needed, he is now 26 months old. Also give a lot of (1000mg) vitamic C, that makes the BM watery. Good luck. > your daughter has been on Miralax since a year old?!! She's > less then 3 and a half years old and on Miralax for 2 1/2 years? > > I would highly suggest a second opinion outside of your pediatrician > with a pediatric gastroenterologist and share this. Perhaps a second > opinion from a different pediatrician too! > > There isn't as much research on how prescription constipation > medications affect infants or toddlers over years of use. We have > one parent here who's young child was on prescription medications for > constipation for years -most of us have not had this. You can > archive for information about and and even though this > situation is most severe -it's real. This child wasn't just another > name in a grouplist -my son went to Summit Speech School with > and Tanner and him appeared to present the exact same way as > preschoolers. I was hysterical crying when I found out about what > happened to in regards to this and thing is none of us know if > it's because dosage kept going up over the years. But it should be > documented -at least here it is. (two of her messages below) > > Thing is back then none of us talked about constipation in regards to > apraxia at grouplists back then as it was considered off topic. But > once I started this group and brought it up it was like the > floodgates opened! I've shared many times about the nutritional > prescription pediatric gastroenterologist Dr. shared with us > for our son Tanner (short version is below). I know first hand how > scary, frustrating and horrible constipation is in a preschool child - > and want all to know you probably can help your child overcome this > without medications -and if you can- why not try? Below is > information about Miralax. > > " How long or often should Miralax be taken? > It may be necessary to use this medication for 2 to 4 days before a > bowel movement occurs. It is recommended that Miralax be taken for no > longer than 2 weeks. > Safety in children has not been established " > http://www.gicare.com/pated/Miralax.htm > > And here's a message board just for those that have their child on > miralax or glycolax: > > " This board originated as a board for those who have had, or their > children have had, significant adverse reactions to, or adverse > events after starting Miralax or Glycolax. A few examples would > include the onset of tremors, tics, changes in personality, etc. I > have been in contact with others who have had adverse reactions to > this product, and decided to create a forum so that individual and > families can post their experience here. I also encourage you to > submit your experience (it can be done anonymously if that's what you > prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is > their link: > http://www.fda.gov/medwatch/ " > miralax/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 The two isn't the same. Magnesium stearate often used as a filling agent in the manufacture of medical tablets and capsules. Magnesium citrate works by attracting water through the tissues. Once in the intestine, it can attract enough water into the intestine to induce BM. The additional water also helps to create more feces, which naturally stimulates bowel motility. This means it can also be used to treat rectal and colon problems. > > your daughter has been on Miralax since a year > old?!! She's > > less then 3 and a half years old and on Miralax for 2 1/2 years? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Thank you for the explanation! I appreciate it. Carolyn In a message dated 3/12/2008 11:45:21 P.M. Eastern Daylight Time, jkmjancso@... writes: The two isn't the same. Magnesium stearate often used as a filling agent in the manufacture of medical tablets and capsules. Magnesium citrate works by attracting water through the tissues. Once in the intestine, it can attract enough water into the intestine to induce BM. The additional water also helps to create more feces, which naturally stimulates bowel motility. This means it can also be used to treat rectal and colon problems. > > your daughter has been on Miralax since a year > old?!! She's > > less then 3 and a half years old and on Miralax for 2 1/2 years? **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
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