Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Congratulations on getting her home, and on figuring out the problem! Darby suffers from constipation as well. We are back on miralax, daily, a very small dose in the morning mixed with OJ. It's keeping her stools so soft she can't withhold (what I believe her issue is, withholding). We see a Dan! dr. and he's the first one (Darby's GI is worthless IMO) to really work on addressing the constipation issues. He ran some tests and found a yeast infection, which we treated with Diflucan. That did help in the beginning, but things are back to the point where she's just so afraid of the stool she refuses to pass it, meaning it creates a major (like grapefruit sized) blockage and then she stops eating, and eventually starts throwing up. When we get the blockage to pass (which scares me that she'll tear herself) there's so much diahrea (sp?) behind it we tend to stop treating the constipation and the cycle starts over again immediately. Right now, Darby has some kind of fruit every day, avoiding bananas. We avoid cheese and rice (and any other binding foods). She drinks at least 1 pediasure w/fiber as well, and we are resolved to keep her on the miralax until she forgets that bowel movements were painful. She also will not go if there's any poop on her at all (meaning as soon as she lets out a tiny bit, she stops) and she is not yet able to poop in the toilet. It's a terrible balance. I have school (in code) let me know daily if Darby has a movement so I can track and up her miralax if she seems to slow down on going. It does take ~3 days for Miralax to start working w/Darby. And that's at the full strength adult-sized dosage for a child that weighs ~30#'s. Are you willing to try the miralax again? Do you have an idea what is causing the constipation (diet, withholding, other intestinal issues?) Again, very glad she's home... Doreen -------------- Original message -------------- I can't thank you all enough for your prayers and kind words. is home now. The hospital determined that she was just so severly constipated it was causing her severe pain and to vomit. Thanks to lots of laxatives her bowels are now moving and she is drinking again. She is asleep now and I hope all her tummy pain is soon gone. Does anyone have any suggestions on how to keep her from getting constipated? We have been dealing with constipation issues since she was an infant. She used to be on miralax but the GI took her off last spring because we had to double the dose to get it to be even a little effective. She I ask the doctor to put her back on it. She drinks pediasure with fiber. She is on a pureed foods diet. I know she won't drink metamucil. Thanks. Missy (proud mom to ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Missy, Miralax is a total nightmare. Please don't put her back on that horrible stuff. Here is an account from another mom regarding her experience with Miralax. Miralax is Polyethylene glycol 3350. The 3350 is the molecular weight. Antifreeze is ethylene glycol, so polyethylene glycol is not the same thing, but " in the family " . PEG is used in colon clean out procedures. In large amounts, electrolytes must be added (colyte, golytely). In theory, the 3350 molecular weight is too large to be absorbed by the body. However, with a surprising number of autistic or SID kids who have leaky gut issues, they exhibit behavioral changes that indicate that the product probably IS indeed being absorbed. There have been a growing number of adverse effects to the FDA's adverse events reporting system. Considering that MOST families do not take time to do this, the number of cases is considered an underestimate. Also, when families go to their docs and say, hey, my child now has tics or my child is having frequent urination or my child is becoming obsessive compulsive or hyper-- the docs say it is unrelated because they have been told that this product is completely safe and not absorbed. I have a mom friend whose daughter entered an autistic state while on Miralax (she was SID only). She took her to the ER where they diagnosed " Miralax toxicity " . She has made friends with a doc who got into the medical journals/studies on PEG and she is going to send me the info on it. Basically about 4 percent of PEG IS absorbed. So if you think of our leaky gut kiddo's -- are they absorbing even more than this? The literature on PEG states that it is nephrotoxic if absorbed by the body. That means it is toxic to the kidneys. Given our kids issues already, it is no wonder that it probably doesn't take much to damage their liver and kidneys even further. One neurologist hypothesized that the PEG entered the bloodstream, where it drew water towards it, thus pulling salt away from the brain (cerebral salt-wasting condition) and resulted in the neurological changes. Some other reports she has say that when they studied PEG toxicity in rabbits-- they all died of renal failure. So I guess I am fortunate that I put two and two together with Ethan and that he was only on it for two months before something REALLY bad happened to him. What happened to him? Well, he developed tics, dysarthric (slurry) speech, difficulty walking in a coordinated manner--almost drunken at times, difficulty with motor skills, eyes got very dark and intense looking, he was having obssesive compulsive thoughts and behaviors, paranoia, facial grimacing... at first, he had frequent urination. Initially he moved his bowels easily with Miralax, but after a couple of weeks, it was as if neurologically, he could not control that anymore-- he knew he wanted to go, but was unable to push them out. We were told it was a behavior. I have found other moms whose kids also experienced this problem-- I think it became neurologically impossible for them to regulate themselves. They told us to increase the dosage, but that still didn't work. Then they put him on a combination of Miralax and Enulose. It was just a nightmare. The dosage is something else that scares me. Most all kids get started out on the adult dose-- 17 grams per day. That is too much for a little body to handle! And then to think that some kids are increased even higher! The package insert advises not to use for more than 2 weeks and I think that should be honored. I think the manufacturer knows all about the small percentage that is absorbed and by advising a two week limit, they are basically trying to tell us that if you continue, you run the risk of absorbing too much and it becoming nephrotoxic. Plus, when families try to get their kids off of it, it is as if they can no longer " go " . They are dependent on it. Ethan would complain of a burning sensation as he passed bowel movements after being on Miralax. This continued for a very long time-- I think because it irritated his intestinal tract so much. What I typed today is actually a pretty tame version of how I feel about Miralax. It put my child's health in jeopardy-- I have spent at least a year trying to rebuild his health-- he was never sensitive to supplements or medications prior to Miralax, but after it, now so many things make him " hyper " --I think because he is still so toxic and his organs were compromised by it. It seems like a quick-fix product, but it is actually like a trip to hell and back. It is a chemical. Period. It is perceived by the body as an irritant. It doesn't belong in the body and certainly not in such delicate bodies as our kids have. is likely magnesium deficient. Mag citrate is a good form to use for constipation. Do you do Epsom salts baths? That's another good way to help her get some more mag. Glad she's home! > I can't thank you all enough for your prayers and kind words. > is home now. > The hospital determined that she was just so severly constipated it > was causing her severe pain and to vomit. > Thanks to lots of laxatives her bowels are now moving and she is > drinking again. > She is asleep now and I hope all her tummy pain is soon gone. > Does anyone have any suggestions on how to keep her from getting > constipated? We have been dealing with constipation issues since > she was an infant. > She used to be on miralax but the GI took her off last spring > because we had to double the dose to get it to be even a little > effective. She I ask the doctor to put her back on it. > She drinks pediasure with fiber. > She is on a pureed foods diet. I know she won't drink metamucil. > Thanks. > Missy (proud mom to ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Wow, excellent information, especially considering we've been using Miralax! My girl is also on a lot of Magnesium, but it's not enough on it's own to get her to go. Her issue is really forceful withholding. I know it sounds impossible, but she can and does intentionally withhold it! *sigh* At what point can we ever feel like we're safe with our girls? Re: is home Missy, Miralax is a total nightmare. Please don't put her back on that horrible stuff. Here is an account from another mom regarding her experience with Miralax. Miralax is Polyethylene glycol 3350. The 3350 is the molecular weight. Antifreeze is ethylene glycol, so polyethylene glycol is not the same thing, but " in the family " . PEG is used in colon clean out procedures. In large amounts, electrolytes must be added (colyte, golytely). In theory, the 3350 molecular weight is too large to be absorbed by the body. However, with a surprising number of autistic or SID kids who have leaky gut issues, they exhibit behavioral changes that indicate that the product probably IS indeed being absorbed. There have been a growing number of adverse effects to the FDA's adverse events reporting system. Considering that MOST families do not take time to do this, the number of cases is considered an underestimate. Also, when families go to their docs and say, hey, my child now has tics or my child is having frequent urination or my child is becoming obsessive compulsive or hyper-- the docs say it is unrelated because they have been told that this product is completely safe and not absorbed. I have a mom friend whose daughter entered an autistic state while on Miralax (she was SID only). She took her to the ER where they diagnosed " Miralax toxicity " . She has made friends with a doc who got into the medical journals/studies on PEG and she is going to send me the info on it. Basically about 4 percent of PEG IS absorbed. So if you think of our leaky gut kiddo's -- are they absorbing even more than this? The literature on PEG states that it is nephrotoxic if absorbed by the body. That means it is toxic to the kidneys. Given our kids issues already, it is no wonder that it probably doesn't take much to damage their liver and kidneys even further. One neurologist hypothesized that the PEG entered the bloodstream, where it drew water towards it, thus pulling salt away from the brain (cerebral salt-wasting condition) and resulted in the neurological changes. Some other reports she has say that when they studied PEG toxicity in rabbits-- they all died of renal failure. So I guess I am fortunate that I put two and two together with Ethan and that he was only on it for two months before something REALLY bad happened to him. What happened to him? Well, he developed tics, dysarthric (slurry) speech, difficulty walking in a coordinated manner--almost drunken at times, difficulty with motor skills, eyes got very dark and intense looking, he was having obssesive compulsive thoughts and behaviors, paranoia, facial grimacing... at first, he had frequent urination. Initially he moved his bowels easily with Miralax, but after a couple of weeks, it was as if neurologically, he could not control that anymore-- he knew he wanted to go, but was unable to push them out. We were told it was a behavior. I have found other moms whose kids also experienced this problem-- I think it became neurologically impossible for them to regulate themselves. They told us to increase the dosage, but that still didn't work. Then they put him on a combination of Miralax and Enulose. It was just a nightmare. The dosage is something else that scares me. Most all kids get started out on the adult dose-- 17 grams per day. That is too much for a little body to handle! And then to think that some kids are increased even higher! The package insert advises not to use for more than 2 weeks and I think that should be honored. I think the manufacturer knows all about the small percentage that is absorbed and by advising a two week limit, they are basically trying to tell us that if you continue, you run the risk of absorbing too much and it becoming nephrotoxic. Plus, when families try to get their kids off of it, it is as if they can no longer " go " . They are dependent on it. Ethan would complain of a burning sensation as he passed bowel movements after being on Miralax. This continued for a very long time-- I think because it irritated his intestinal tract so much. What I typed today is actually a pretty tame version of how I feel about Miralax. It put my child's health in jeopardy-- I have spent at least a year trying to rebuild his health-- he was never sensitive to supplements or medications prior to Miralax, but after it, now so many things make him " hyper " --I think because he is still so toxic and his organs were compromised by it. It seems like a quick-fix product, but it is actually like a trip to hell and back. It is a chemical. Period. It is perceived by the body as an irritant. It doesn't belong in the body and certainly not in such delicate bodies as our kids have. is likely magnesium deficient. Mag citrate is a good form to use for constipation. Do you do Epsom salts baths? That's another good way to help her get some more mag. Glad she's home! > I can't thank you all enough for your prayers and kind words. > is home now. > The hospital determined that she was just so severly constipated it > was causing her severe pain and to vomit. > Thanks to lots of laxatives her bowels are now moving and she is > drinking again. > She is asleep now and I hope all her tummy pain is soon gone. > Does anyone have any suggestions on how to keep her from getting > constipated? We have been dealing with constipation issues since > she was an infant. > She used to be on miralax but the GI took her off last spring > because we had to double the dose to get it to be even a little > effective. She I ask the doctor to put her back on it. > She drinks pediasure with fiber. > She is on a pureed foods diet. I know she won't drink metamucil. > Thanks. > Missy (proud mom to ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Doreen, Have you tried Oxypowder? You can easily fine tune the dose and it is completely safe and non-toxic. I know many people that have used it with " tough " cases with excellent results. http://www.dreddyclinic.com/products/oxypowder.htm > Wow, excellent information, especially considering we've been using > Miralax! > > My girl is also on a lot of Magnesium, but it's not enough on it's own > to get her to go. Her issue is really forceful withholding. I > know it > sounds impossible, but she can and does intentionally withhold it! > > *sigh* > At what point can we ever feel like we're safe with our girls? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Has she had a celiac panel (bloodwork)? Or one for gluten or lactose or casein intolerance? > > I can't thank you all enough for your prayers and kind words. > is home now. > The hospital determined that she was just so severly constipated it was causing her severe pain and to vomit. > Thanks to lots of laxatives her bowels are now moving and she is drinking again. > She is asleep now and I hope all her tummy pain is soon gone. > Does anyone have any suggestions on how to keep her from getting constipated? We have been dealing with constipation issues since she was an infant. > She used to be on miralax but the GI took her off last spring because we had to double the dose to get it to be even a little effective. She I ask the doctor to put her back on it. > She drinks pediasure with fiber. > She is on a pureed foods diet. I know she won't drink metamucil. > Thanks. > Missy (proud mom to ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 You might look into homeopathy for both the constipation and the fear that causes her to withhold... > > Congratulations on getting her home, and on figuring out the problem! > > Darby suffers from constipation as well. We are back on miralax, daily, a very small dose in the morning mixed with OJ. It's keeping her stools so soft she can't withhold (what I believe her issue is, withholding). .... > > Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 I agree with Penny. We use homeopathy and some highly specific supplements almost exclusively now. My daughter's bowel issues are almost no-existent now, and they were very similar.... withholding, chronic constipation, severe pain and occasional gagging or vomiting. > You might look into homeopathy for both the constipation and the fear > that causes her to withhold... > > >> >> Congratulations on getting her home, and on figuring out the problem! >> >> Darby suffers from constipation as well. We are back on miralax, > daily, a very small dose in the morning mixed with OJ. It's keeping > her stools so soft she can't withhold (what I believe her issue is, > withholding). > ... >> >> Doreen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Can you guys give me more info on what homeopathic remedies there are for withholding/constipation? Withholding being a behavior, I'm a bit lost here (and not ashamed to admit it). After reading about Miralax, I was going to go to the new doctor and ask for a prescription strength stool softener. I really don't want to medicate if she doesn't need it, however, I cannot abide that she's in pain or discomfort and I will medicate to make sure that is not the case. Doreen Re: Re: is home I agree with Penny. We use homeopathy and some highly specific supplements almost exclusively now. My daughter's bowel issues are almost no-existent now, and they were very similar.... withholding, chronic constipation, severe pain and occasional gagging or vomiting. > You might look into homeopathy for both the constipation and the fear > that causes her to withhold... > > >> >> Congratulations on getting her home, and on figuring out the problem! >> >> Darby suffers from constipation as well. We are back on miralax, > daily, a very small dose in the morning mixed with OJ. It's keeping > her stools so soft she can't withhold (what I believe her issue is, > withholding). > ... >> >> Doreen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Missy, Wow! What an experience! I can totally relate to the constipation problems you are having with . is 12, autistic, and has been on Miralax since she was age 3. We thought that she was purposely with-holding when she was younger but that was not the case. She suffers from a poor diet and is extremely picky in not only eating but in drinks. My husband is also a picky eater which never made it easy for me to do a special diet. was on 17 grams of the miralax until about a year ago and then they upped the dosage to 25 grams. She doesn't always drink her drink with it in it. We have had a time during these holidays and she is not have regular bowel movements at all. We always felt like she was at risk for worse if we did nothing and as with others who have posted about this subject, the dr orginally that put her on this was pathetic. This woman doctor actually accused me of terrible things for trying secretin at the time and was adamant about helping me with anything like that. Of course, she put on Miralax, not a person you want to trust forever. Now: A NOTE to the board about a friend of mine's son who recently had his colon removed. He is schizophrenic/autistic characteristics and was on miralax for as long as and he started with Renal failure. They operated emergency on him. He is 13 years old. She now has to drain his poop out of him daily. This is sad and has made me think about what the other person posted about serious problems staying on this drug, Miralax. I am calling my doctor in the morning and making an appointment for . I am fed up with this and want the best for her. Thanks for all those posting. Shanna (mother to 5) > > I can't thank you all enough for your prayers and kind words. > is home now. > The hospital determined that she was just so severly constipated it was causing her severe pain and to vomit. > Thanks to lots of laxatives her bowels are now moving and she is drinking again. > She is asleep now and I hope all her tummy pain is soon gone. > Does anyone have any suggestions on how to keep her from getting constipated? We have been dealing with constipation issues since she was an infant. > She used to be on miralax but the GI took her off last spring because we had to double the dose to get it to be even a little effective. She I ask the doctor to put her back on it. > She drinks pediasure with fiber. > She is on a pureed foods diet. I know she won't drink metamucil. > Thanks. > Missy (proud mom to ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 , Is the internet the only place to purchase this Oxypowder? Also, how much is it? I went to the web site and you have to sign in in order to find out. Thanks, Shanna > > > Wow, excellent information, especially considering we've been using > > Miralax! > > > > My girl is also on a lot of Magnesium, but it's not enough on it's own > > to get her to go. Her issue is really forceful withholding. I > > know it > > sounds impossible, but she can and does intentionally withhold it! > > > > *sigh* > > At what point can we ever feel like we're safe with our girls? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Doreen, my oldest NT daughter held it when she was around 15 mos. She always had unusually dry bms. Evidently they learn from the pain to hold it because they don't wanna have more pain the next bm, which of course only makes it worse. I remember times of her rectum being open from the mass and my having to pick it out of her, it was horrible. Is there any chance she would drink essiac tea? There's also an Indian herb (I think it's an herb) called triphala. It's supposed to help maintain proper movement. I think the essiac tea is great, but Allie won't drink it. I get the same sort Karyn Seroussi recommends in her book, I think it's spelled objiwa ?? HTH, Debi --- In Autism_in_Girls , " Doreen " w Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Hope you're not seeing Al-Tawil's group <g> Have any of you thought about trying to get in Thoughtful House in Austin, TX? Wakefield is out there. Debi --- In Autism_in_Girls , " Shanna " w Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.