Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Jennie,She is 3. I know he says her colon looks good but I am still leary. My husband and I agreed after how he acted today that we would go for the 6 wk check up then not go back to that doc. The only problem is there are only two practices in our city and she has been to both of them. I think we may go back to her original gi. The only reason we left was because she got put in the hospital and her ped wanted her to see the docs she sees now. It took an extreme amount of prep to get her cleaned out and he still had to suction some out. Her insurance won't pay for her to go out of louisville but we may just pay out of pocket for a single visit to establish with a new doc then fight with the insurance company. We have been drowning in medical bills since she was born so it is getting hard to afford much more. She has had a lot of medical issues and I had open heart surgery right before she turned 2. I am going to keep looking into other options. I just want to know why it takes so much to get her cleaned out and why no matter what we do she gets backed up. She is doing well. Did your son have much bleeding afterwards. She has bled pretty bad today but is doing some better. Thanks for all of the advise. FaithTo: miralax Sent: Fri, February 12, 2010 3:30:24 PMSubject: Re: ReJennie Hi Faith! I hope all went well with her scope/biopsy. Is she doing ok? Presuming your doc is correct, that is a good sign he said it looks good! My son showed mega colon with all his scopes. This is a commen affect with hirschsprungs especially late diagnoses(my son had yrs of stretching), in younger it may not show the stretching yet. If her colon is normal that is also a good sign you have kept her stools moving enough to not stretch the intestines! Im so sorry if you already told me, but how old is your daughter? Faith you really need to find a new doc if he cant be cordial. I would be leary of putting my child in someones hands if they have no patients. We have been there and quickly found a new gastro and we are so greatful! He is awesome. Please keep us updated! Jennie<><From: Faith Fox <faif15yahoo (DOT) com>Subject: ReJennieTo: miralax@yahoogroups .comDate: Friday, February 12, 2010, 12:22 PM Jennie,My dd had her colonoscopy today with biopsy. They said her colon looked normal but we won't know about biopsy until Mon. The doc was very rude. We are in the process of finding somewhere else to take her. Anyways the question I had was did your ds colon look normal when they did the biopsy or did they know by looking at the colon. Thanks FaithFrom: jeanie ward <dreamjeanie@ att.netTo: miralax@yahoogroups .comSent: Fri, February 12, 2010 10:52:22 AMSubject: Re: contacting someone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Jennie,If you don't mind me asking what area do you live in? Since you really like your docFaithTo: miralax Sent: Fri, February 12, 2010 3:30:24 PMSubject: Re: ReJennie Hi Faith! I hope all went well with her scope/biopsy. Is she doing ok? Presuming your doc is correct, that is a good sign he said it looks good! My son showed mega colon with all his scopes. This is a commen affect with hirschsprungs especially late diagnoses(my son had yrs of stretching), in younger it may not show the stretching yet. If her colon is normal that is also a good sign you have kept her stools moving enough to not stretch the intestines! Im so sorry if you already told me, but how old is your daughter? Faith you really need to find a new doc if he cant be cordial. I would be leary of putting my child in someones hands if they have no patients. We have been there and quickly found a new gastro and we are so greatful! He is awesome. Please keep us updated! Jennie<>< From: Lillu <lillu0314yahoo (DOT) com>Subject: Re: contacting someoneTo: miralax@yahoogroups .comDate: Friday, February 12, 2010, 11:35 AM Jeanie, please see below for the edited version with questions/comments. Others are welcome to re-edit. I am writing on behalf of a large number of parents who are hoping you could help us investigate a problem with Physicians prescribing Miralax off-label to children. The Physician's are prescribing this medication to children, often long-term, despite the manufacturer' s recommendations not to administer to children and not to use long-term. As a result, some of these children are having residual adverse reactions. Several may have even died as a result of possible complications related to use of Miralax. Although we have contacted the FDA, attorneys and physicians, we have not had any success with having someone formally investigate this. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, comprised mostly of parents with children who have had or are having adverse reactions to this medication. I petitioned the FDA back in 2004 [petitioned them to do what?], but they responded that it needs more research, with which I hope you can help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received back from the FDA a record of only 6 people who had filed a complaint [what kind of complaints were people filing then - for use in adults or children?]. There is now a record of 1,403 complaints for adverse reactions to this medication. The parents in this group are willing to tell their stories in the hopes that someone can help these children and possibly bring greater awareness of the possibility that this medication is being absorbed through the gut mucosa, when the initial school of thought was that it is inert and poorly absorbed. Jeanie Ward From: jeanie ward <dreamjeanie@ att.net>To: "miralax@yahoogroup s.com" <miralax@yahoogroups .com>Cc: merry wetherbee <merrywbeeyahoo (DOT) com>; mommtlc <oldworldtile@ yahoo.com>Sent: Fri, February 12, 2010 12:02:14 PMSubject: contacting someone How about this? I was thinking of sending this to Pam Zeckman on Channel 7 or contacting Channel 5 news........ ......please help me out here as I am surely okay with constructive criticism I was wondering if you could investigate a problem with Physician's prescribing Miralax off label to children. Some of these children are having residual adverse reactions, in which, we aren't having any luck contacting the FDA, Attorney's, or the help of Physician's. The Physician's are prescribing this medication to children despite the manufacturer' s recommendations, not to give to children. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, mostly parents with children who've adverse reactions to this medication. I petitioned the FDA back in 2004, but they responded, it needs more research. I was wondering if you could help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received only 6 people back from the FDA. There are now 1403 adverse reactions to this medication and several children have died. The parents of this group are willing to tell their stories so someone can help these children and hopefully bring to someones attention that this medication is being absorbed, in which, they thought it was inert, and poorly absorbed. Jeanie Ward Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Jeanie, actually you are write,Im so glad you mentioned that! I forgot to mention that my son had been sent in for tests due to extreme bloating(veins bulging etc.), it was thought for sure he was severely impacted or had blockage. Well to our's and doctors surprise, almost no stool, it was severe air bloating. This could have also contributed to his mega colon, gosh, Jeanie, thanks for that info! This happened a few times with him and the name/answer they gave us was pseudo obstructions(the unknown condition). They couldnt tell us what even caused it. Jennie<>< From: Lillu <lillu0314yahoo (DOT) com>Subject: Re: contacting someoneTo: miralax@yahoogroups .comDate: Friday, February 12, 2010, 11:35 AM Jeanie, please see below for the edited version with questions/comments. Others are welcome to re-edit. I am writing on behalf of a large number of parents who are hoping you could help us investigate a problem with Physicians prescribing Miralax off-label to children. The Physician's are prescribing this medication to children, often long-term, despite the manufacturer' s recommendations not to administer to children and not to use long-term. As a result, some of these children are having residual adverse reactions. Several may have even died as a result of possible complications related to use of Miralax. Although we have contacted the FDA, attorneys and physicians, we have not had any success with having someone formally investigate this. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, comprised mostly of parents with children who have had or are having adverse reactions to this medication. I petitioned the FDA back in 2004 [petitioned them to do what?], but they responded that it needs more research, with which I hope you can help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received back from the FDA a record of only 6 people who had filed a complaint [what kind of complaints were people filing then - for use in adults or children?]. There is now a record of 1,403 complaints for adverse reactions to this medication. The parents in this group are willing to tell their stories in the hopes that someone can help these children and possibly bring greater awareness of the possibility that this medication is being absorbed through the gut mucosa, when the initial school of thought was that it is inert and poorly absorbed. Jeanie Ward From: jeanie ward <dreamjeanie@ att.net>To: "miralax@yahoogroup s.com" <miralax@yahoogroups .com>Cc: merry wetherbee <merrywbeeyahoo (DOT) com>; mommtlc <oldworldtile@ yahoo.com>Sent: Fri, February 12, 2010 12:02:14 PMSubject: contacting someone How about this? I was thinking of sending this to Pam Zeckman on Channel 7 or contacting Channel 5 news........ ......please help me out here as I am surely okay with constructive criticism I was wondering if you could investigate a problem with Physician's prescribing Miralax off label to children. Some of these children are having residual adverse reactions, in which, we aren't having any luck contacting the FDA, Attorney's, or the help of Physician's. The Physician's are prescribing this medication to children despite the manufacturer' s recommendations, not to give to children. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, mostly parents with children who've adverse reactions to this medication. I petitioned the FDA back in 2004, but they responded, it needs more research. I was wondering if you could help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received only 6 people back from the FDA. There are now 1403 adverse reactions to this medication and several children have died. The parents of this group are willing to tell their stories so someone can help these children and hopefully bring to someones attention that this medication is being absorbed, in which, they thought it was inert, and poorly absorbed. Jeanie Ward Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Is your child still veiny? My dd is..............I read something about why this happened with the Miralax but now I forgot? It has something to do with the blood or constricting blood vessels..............Does anyone know why you can see the veins through the skin after taking PEG? From: Lillu <lillu0314yahoo (DOT) com>Subject: Re: contacting someoneTo: miralax@yahoogroups .comDate: Friday, February 12, 2010, 11:35 AM Jeanie, please see below for the edited version with questions/comments. Others are welcome to re-edit. I am writing on behalf of a large number of parents who are hoping you could help us investigate a problem with Physicians prescribing Miralax off-label to children. The Physician's are prescribing this medication to children, often long-term, despite the manufacturer' s recommendations not to administer to children and not to use long-term. As a result, some of these children are having residual adverse reactions. Several may have even died as a result of possible complications related to use of Miralax. Although we have contacted the FDA, attorneys and physicians, we have not had any success with having someone formally investigate this. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, comprised mostly of parents with children who have had or are having adverse reactions to this medication. I petitioned the FDA back in 2004 [petitioned them to do what?], but they responded that it needs more research, with which I hope you can help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received back from the FDA a record of only 6 people who had filed a complaint [what kind of complaints were people filing then - for use in adults or children?]. There is now a record of 1,403 complaints for adverse reactions to this medication. The parents in this group are willing to tell their stories in the hopes that someone can help these children and possibly bring greater awareness of the possibility that this medication is being absorbed through the gut mucosa, when the initial school of thought was that it is inert and poorly absorbed. Jeanie Ward From: jeanie ward <dreamjeanie@ att.net>To: "miralax@yahoogroup s.com" <miralax@yahoogroups .com>Cc: merry wetherbee <merrywbeeyahoo (DOT) com>; mommtlc <oldworldtile@ yahoo.com>Sent: Fri, February 12, 2010 12:02:14 PMSubject: contacting someone How about this? I was thinking of sending this to Pam Zeckman on Channel 7 or contacting Channel 5 news........ ......please help me out here as I am surely okay with constructive criticism I was wondering if you could investigate a problem with Physician's prescribing Miralax off label to children. Some of these children are having residual adverse reactions, in which, we aren't having any luck contacting the FDA, Attorney's, or the help of Physician's. The Physician's are prescribing this medication to children despite the manufacturer' s recommendations, not to give to children. We have created a yahoo group called Miralax@yahoogroups .com with 1300 members, mostly parents with children who've adverse reactions to this medication. I petitioned the FDA back in 2004, but they responded, it needs more research. I was wondering if you could help. When I first submitted to the Freedom of Information Act (AERS reporting system) back in 2001, I received only 6 people back from the FDA. There are now 1403 adverse reactions to this medication and several children have died. The parents of this group are willing to tell their stories so someone can help these children and hopefully bring to someones attention that this medication is being absorbed, in which, they thought it was inert, and poorly absorbed. Jeanie Ward Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 I just wanted to give an update on my dd. She is doing well today after her procedure and the bleeding has stopped. I would like to say though that I now know without a doubt that some of her behavior issues she had been having was because of the miralax. She had been off of the miralax for over two months before the procedure and some of the aggressive and extremely hyper behavior stopped. We did the clean out on thursday and had to use miralax, she did have to have high doses but the behavior came back almost immediately and she has been out of control for the past couple days. FYI, I also noticed that on some bottles of mag. citrate PEG is an ingredient. ThanksFaithMessages in this topic (14) Recent Activity: New Members 2 New Files 4 Visit Your Group Start a New Topic Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Hi Faith! I am so glad she is doing well! Yes, I was surprised to see the peg in some of the citrate's, but they do have them without! Please keep us updated on her results! You and your daughter are in my thoughts and prayers! Jennie<><Subject: Re: ReJennieTo: miralax Date: Saturday, February 13, 2010, 8:02 PM I just wanted to give an update on my dd. She is doing well today after her procedure and the bleeding has stopped. I would like to say though that I now know without a doubt that some of her behavior issues she had been having was because of the miralax. She had been off of the miralax for over two months before the procedure and some of the aggressive and extremely hyper behavior stopped. We did the clean out on thursday and had to use miralax, she did have to have high doses but the behavior came back almost immediately and she has been out of control for the past couple days. FYI, I also noticed that on some bottles of mag. citrate PEG is an ingredient. ThanksFaithMessages in this topic (14) Recent Activity: New Members 2 New Files 4 Visit Your Group Start a New Topic Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use . Quote Link to comment Share on other sites More sharing options...
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