Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Would it be possible to attach what you've written to see if there's anything more anyone can contribute? I'm thinking you've been exhaustive, but just in case?? We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 I don't have it, Carol is writing it and I just requested to show it to the group, just for that reason. To: miralax Sent: Sun, January 1, 2012 5:27:53 PMSubject: Re: FDA letter Would it be possible to attach what you've written to see if there's anything more anyone can contribute? I'm thinking you've been exhaustive, but just in case?? We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Fabulous! Thanks. Oh! And before you send it -- I was talking with my chiropractor on Friday. She said she attended a nutrition class last week where another chiro was leading a panel of adults who were doing various clinical trials on different nutraceuticals. One woman mentioned her son was having serious behavior problems - completing unlike him. Turns out, he's on Miralax...my chiro spoke up right away, telling her (from our discussions) that PEG can cause this kind of erratic behavior. The head chiro didn't want to take "someone's" word on this, so he researched. Supposedly, he found a journal article showing a study that PROVED this. I've kindly asked for a link to the study. Will send it along as soon as I get it. I don't have it, Carol is writing it and I just requested to show it to the group, just for that reason. To: miralax Sent: Sun, January 1, 2012 5:27:53 PMSubject: Re: FDA letter Would it be possible to attach what you've written to see if there's anything more anyone can contribute? I'm thinking you've been exhaustive, but just in case?? We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Hi everyone? I would also like a chance to see a draft, and pass it (or a list of side effects) around. I have been spreading the word and would like to ask folks on some f my other mailing lists to give input. Many of them may overlap, like the GAPS help list and some Lyme lists, but there may be folks who haven't heard and who have things to add. as well as educating my own friends. let me know if we have a list or draft or somethign that is ok to share outside this list.thanks for all your hard work! I haven't submitted anything as our story really isn't as clearly connected to miralax use, nor as dramatic. But I know it has had its impact on many adults as well as kids, with much less severe but still lingering side effects.best wishesMeadow To: miralax Sent: Sunday, January 1, 2012 6:31 PM Subject: Re: FDA letter I don't have it, Carol is writing it and I just requested to show it to the group, just for that reason. To: miralax Sent: Sun, January 1, 2012 5:27:53 PMSubject: Re: FDA letter Would it be possible to attach what you've written to see if there's anything more anyone can contribute? I'm thinking you've been exhaustive, but just in case?? We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 My Accu/ Chiro has a slew of children on this with the same issues. She asks me for my research and I e her all the info I get as well. You will be AMAZED to say the least when you see what we've written thus far!!!!!!! Whew........it's been a long 10 years!!!!!!!!!A huge thank you to Carol for her knowledge, time, effort, and compassion, for making this all happen. To: miralax Sent: Sun, January 1, 2012 5:36:51 PMSubject: Re: FDA letter Fabulous! Thanks. Oh! And before you send it -- I was talking with my chiropractor on Friday. She said she attended a nutrition class last week where another chiro was leading a panel of adults who were doing various clinical trials on different nutraceuticals. One woman mentioned her son was having serious behavior problems - completing unlike him. Turns out, he's on Miralax...my chiro spoke up right away, telling her (from our discussions) that PEG can cause this kind of erratic behavior. The head chiro didn't want to take "someone's" word on this, so he researched. Supposedly, he found a journal article showing a study that PROVED this. I've kindly asked for a link to the study. Will send it along as soon as I get it. I don't have it, Carol is writing it and I just requested to show it to the group, just for that reason. To: miralax Sent: Sun, January 1, 2012 5:27:53 PMSubject: Re: FDA letter Would it be possible to attach what you've written to see if there's anything more anyone can contribute? I'm thinking you've been exhaustive, but just in case?? We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation.Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit.Thanks! From: jeanie ward To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PM Subject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Thank you - I will include. I found an article that says peg can block protein absorption - do you think that could be why? http://www.waset.org/journals/waset/v49/v49-30.pdf Carol Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation. Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit. Thanks! To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PMSubject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you.............. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Thanks LilluTo: "miralax " <miralax >Sent: Sun, January 1, 2012 9:15:47 PMSubject: Re: FDA letter Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation.Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit.Thanks! From: jeanie ward To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PM Subject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you..............Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2012 Report Share Posted January 2, 2012 Hi!!! Your email got lost on me and I apologise. I am Canadian, does it help to have my contributions to the letter? Or is it perhaps too late? Thanks, Rae From: jeanie ward Sent: Sunday, January 01, 2012 8:39 PM To: miralax Subject: Re: FDA letter Thanks Lillu To: "miralax " <miralax >Sent: Sun, January 1, 2012 9:15:47 PMSubject: Re: FDA letter Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation. Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit. Thanks! To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PMSubject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you.............. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2012 Report Share Posted January 3, 2012 Please do............we need every letter from across the Globe. There are people on here from Okawa Japan, this is a world wide problem.To: miralax Sent: Mon, January 2, 2012 11:12:37 PMSubject: Re: FDA letter Hi!!! Your email got lost on me and I apologise. I am Canadian, does it help to have my contributions to the letter? Or is it perhaps too late? Thanks, Rae From: jeanie ward Sent: Sunday, January 01, 2012 8:39 PM To: miralax Subject: Re: FDA letter Thanks Lillu To: "miralax " <miralax >Sent: Sun, January 1, 2012 9:15:47 PMSubject: Re: FDA letter Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation. Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit. Thanks! To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PMSubject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you.............. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2012 Report Share Posted January 3, 2012 My Miralax Nightmare: I am a 43 year old female from Canada. I have unexplained stomach upset with nausea and vomiting. After a CT Scan my doctor noted I could be constipated and said Restoralax was a miracle drug. He told me to go home and start with a full dose every second day which I did. The bad side effects hit very quickly but I continued for a week and hoped they would go away. They did not and I was told to take a half dose for week then work up to a full dose. So I did that, still sick and the nausea was persisting. They wanted me to go to a full dose every day which I managed for about 3 days then. I tried a full dose, then went to a quarter dose every second day, quit and started slowly and I still suffered. The drug did produce about 10 to 12 or more very small bowel movements a day that came with passing some gas. My side effects included joint pain, severe abdominal pain radiating to my back, horrible gas and associated pain. I continued to have nausea and vomiting. My emotions were poor and I could not concentrate on anything. I felt so sick I did not function and getting out of bed was an effort. The pain was debiliitating. I also had memory loss, blurred vision and what I refer to as trances. Chills and sweating also occured with a several pound weight gain due to gas and fluid retention. When I stopped the drug finally after crying for about 6 weeks I had constipation of the likes I had never encountered before. I tried lactulose which did not affect it. For about 3 weeks I took double the suggested dose of dulcolax with Magnesium Citrate once to twice a week. The bowels were virtually paralysed. I also had very painful urination which subsided with use of lemon juice but occasionally re appears. After I told the doctors about this they said “It must be the side effect of another drug – Restoralax is free from side effects. Or “I think it’s a psychological thing because I have not heard this from anything else†I have only one kidney – lost the other to cancer and was furious after finding out about the potential of renal failure. I thank the Lord that I was only on it for about 6 weeks. I believe this drug should only be used as a last resort if at all. From: jeanie ward Sent: Tuesday, January 03, 2012 7:53 AM To: miralax Subject: Re: FDA letter Please do............we need every letter from across the Globe. There are people on here from Okawa Japan, this is a world wide problem. To: miralax Sent: Mon, January 2, 2012 11:12:37 PMSubject: Re: FDA letter Hi!!! Your email got lost on me and I apologise. I am Canadian, does it help to have my contributions to the letter? Or is it perhaps too late? Thanks, Rae From: jeanie ward Sent: Sunday, January 01, 2012 8:39 PM To: miralax Subject: Re: FDA letter Thanks Lillu To: "miralax " <miralax >Sent: Sun, January 1, 2012 9:15:47 PMSubject: Re: FDA letter Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation. Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit. Thanks! To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PMSubject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you.............. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2012 Report Share Posted January 3, 2012 Thank you - will add. Carol My Miralax Nightmare: I am a 43 year old female from Canada. I have unexplained stomach upset with nausea and vomiting. After a CT Scan my doctor noted I could be constipated and said Restoralax was a miracle drug. He told me to go home and start with a full dose every second day which I did. The bad side effects hit very quickly but I continued for a week and hoped they would go away. They did not and I was told to take a half dose for week then work up to a full dose. So I did that, still sick and the nausea was persisting. They wanted me to go to a full dose every day which I managed for about 3 days then. I tried a full dose, then went to a quarter dose every second day, quit and started slowly and I still suffered. The drug did produce about 10 to 12 or more very small bowel movements a day that came with passing some gas. My side effects included joint pain, severe abdominal pain radiating to my back, horrible gas and associated pain. I continued to have nausea and vomiting. My emotions were poor and I could not concentrate on anything. I felt so sick I did not function and getting out of bed was an effort. The pain was debiliitating. I also had memory loss, blurred vision and what I refer to as trances. Chills and sweating also occured with a several pound weight gain due to gas and fluid retention. When I stopped the drug finally after crying for about 6 weeks I had constipation of the likes I had never encountered before. I tried lactulose which did not affect it. For about 3 weeks I took double the suggested dose of dulcolax with Magnesium Citrate once to twice a week. The bowels were virtually paralysed. I also had very painful urination which subsided with use of lemon juice but occasionally re appears. After I told the doctors about this they said “It must be the side effect of another drug – Restoralax is free from side effects. Or “I think it’s a psychological thing because I have not heard this from anything else†I have only one kidney – lost the other to cancer and was furious after finding out about the potential of renal failure. I thank the Lord that I was only on it for about 6 weeks. I believe this drug should only be used as a last resort if at all. From: jeanie ward Sent: Tuesday, January 03, 2012 7:53 AM To: miralax Subject: Re: FDA letter Please do............we need every letter from across the Globe. There are people on here from Okawa Japan, this is a world wide problem. To: miralax Sent: Mon, January 2, 2012 11:12:37 PMSubject: Re: FDA letter Hi!!! Your email got lost on me and I apologise. I am Canadian, does it help to have my contributions to the letter? Or is it perhaps too late? Thanks, Rae From: jeanie ward Sent: Sunday, January 01, 2012 8:39 PM To: miralax Subject: Re: FDA letter Thanks Lillu To: "miralax " <miralax >Sent: Sun, January 1, 2012 9:15:47 PMSubject: Re: FDA letter Jeanie, I would like to include the story of my DD where her growth chart shows a direct link between her failure to thrive and her being on Miralax. She was in the 25th percentile for both height and weight before age 18 months, when she was put on Miralax. Now, she is in the 3rd percentile and looks more like a 3 year old than a 4 year old, which makes sense as she lost 8.5 crucial months of growth. She literally did not grow a millimeter and actually lost 2oz during the time she was on Miralax between the ages of 17.2 months and 25.3 months. Her pediatrician, the same one who prescribed the Miralax is the one who pulled her charts for me. When I pointed out that the plateau period in her growth chart correlates perfectly with her being on Miralax, the pediatrician's only comment was: "I cannot make a comment one way or the other until I see a conclusive study." Really!? At the very least, this should prompt her to look at all the other children for whom she has prescribed Miralax (many, by her own admission) to see if they are exhibiting issues without any other explanation. Anyway, would you like me to write it up any differently? I am also going to request a copy of my DD's growth chart as evidence/exhibit. Thanks! To: "miralax " <miralax > Sent: Sunday, January 1, 2012 6:24 PMSubject: FDA letter We are in the final stages of sending our formal letter to the FDA requesting an investigation for the safety and effectiveness of polyethylene glycol. Does anyone else want to submit a statement or request? Thank you.............. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Yes I do. Do I need to tell the whole story or just a short statement? I haven't been on the board much for a while. > > We are in the final stages of sending our formal letter to the FDA requesting an > investigation for the safety and effectiveness of polyethylene glycol. Does > anyone else want to submit a statement or request? > > Thank you.............. > Jeanie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 Anything would be fine, thanksTo: miralax Sent: Thu, January 12, 2012 12:45:59 AMSubject: Re: FDA letter Yes I do. Do I need to tell the whole story or just a short statement? I haven't been on the board much for a while. > > We are in the final stages of sending our formal letter to the FDA requesting an > investigation for the safety and effectiveness of polyethylene glycol. Does > anyone else want to submit a statement or request? > > Thank you.............. > Jeanie > Quote Link to comment Share on other sites More sharing options...
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