Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 If this drug was harmless, we wouldn't have even ONE, person in the FDA database, and if it didn't cause any harm, we wouldn't have even ONE person complaining about side effects on this group. And lastly, if it didn't cause any harm, we wouldn't have even one child who died..................Many people had a lot to say about this situation. Interestingly, out of the 191 comments posted at the end of the NY Times story, not ONE asked to see to the petition or any evidence on this subject before they gave their opinion..............warm regards to all the parents, adults, children, and families that were effected, my heart goes out to all of you ♥ To: "miralax " <miralax >Sent: Wed, June 13, 2012 6:35:11 PMSubject: Re: Key important points to remember about this group Personally, I think that the reason that the FDA is not being deluged with thousands of adverse events reports as related to Miralax is because people are not connecting the dots back to Miralax. First of all, the doctors are recommending this drug with full confidence and never mention any possible side-effects. Secondly, if the negative side-effects don't manifest within days or a week or so after taking Miralax, people will probably not directly connect the adverse events to Miralax. I certainly didn't. And most physicians refuse to because they are completely convinced that this is a safe drug.Again, I'm no scientist, but if a pattern of similar or identical negative reactions crop up in patients taking a specific drug, then it's worth a second, third, or fourth look at THOSE patients. At the very least, a questionnaire should be released to all physicians to have their patients to whom they have recommended Miralax for short- or long-term use (long-term = 7+ days), to check off a list of the adverse events already reported to the FDA without making mention of Miralax to see how many report what we have seen. That might begin to shed a light..... To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 6:58 PM Subject: Re: Key important points to remember about this group I, too, am offended by your assertion that blaming psychological problems on an OTC laxative is " delusional". My granddaughter had daily episodes of rage while on miralax. She started stuttering, acquired "tics" and her entire demeanor changed. As soon as she was off the miralax, the rage went away. You have no idea what we went through because she took this poison daily for three months. Sent from my iPhone I am sorry that you have misinterpreted my information. I would like to inform you that I am in no way pro-Miralax and I also would like to point out that I do believe that some of the side effects could very well be attributed to Miralax. As a medical professional I strive to put the needs of my patients first and I long to ensure that the care they get is the best possible. My concern is that there are many people who are having symptoms that could be attributed to various other causes. The aspect that is of most concern to me is that there have been recommendations to use alternative therapies which can be very dangerous for children. I apologize if I have offended anyone my goal is only to bring to light the need for medical professionals to help you work through some difficult problems you are facing. To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 2:27 PM Subject: Re: Key important points to remember about this group I would like to kindly say that you are in the wrong place. Those that have signed up to this group are here willingly because we as parents know that this drug has negatively effected our children. Nobody forced our hand to join this group. Thank you for your information, but please kindly exit as you are not of the same mindset as those in this group. You are welcome to form your own pro mirilax group if you'd like. Nobody will make me believe differently about this drug because my child lived it. I could care less about the references you list. It is not going to change my mind about what I saw from my daughter while on this drug. Too many times there have been drugs that were eventually pulled off of the shelves that previously were recommended and came w/ similar positive reference lists. Until you live it w/ your child, you have no business scorning others who ARE acting as responsible parents by making the decision to discontinue a drug they know is causing harm to their child. It woudl be irresponsible to continue a drug in such a manner as a parent. It's quite posssible the drug effects different children in different ways and for most of us...that's exactly what has occurred. We all had a negative experience with it for our children. I wish you well, but again I want to be sure you know that we are all friendly here to one another and do not welcome negativity by somebody that considers many of us "irresponsible and delusional". I mean no disrespect with what I say to you and I hope you do not take it as such. To: miralax Sent: Wednesday, June 13, 2012 2:01 PM Subject: Key important points to remember about this group * PEG 8000 and PEG 6000 are not the same as PEG 3350, and any information you have found regarding the metabolism, uses, cautions, etc about a different PEG cannot be extrapolated to assuming characteristics for PEG 3350. * Providing unsubstantiated advice to parents whose primary concern is the safety of their child is irresponsible. Many of the suggestions (natural and medicinal) are completely contraindicated for use in children. Even if you have tried one of these harmful therapies in your child, please do not provide this advice for other parents. (SENNA IS CONTRAINDICATED IN CHILDREN AND VERY HABIT FORMING - it is known to alter the child's normal GI tract motility). * In addition, most of the therapies you have decided to share on this message board have also not been proven to be safe in children under the age of 18. Why would you exchange one treatment option for another with the same problem? * Polyethylene glycol is NOT the same as ethylene dioxide, ethylene glycol, or diethylene glycol and and information should not be mistaken as such. * Blaming your child's psychiatric issues on a common bulk forming laxative is delusional. Look at the bigger picture. You are doing nothing to help your child by blaming the wrong cause. And even worse, you are causing alarm for other parents whose children may be benefiting from following their doctor's advice. There are many confounding factors that may be contributing to a patient's side effects. Please don't generalize your "experience" to those of all patients. * Studies have been published in reputable journals addressing the safety and efficacy of Miralax in children for up to a year. Please reference these articles for accurate information regarding this drug: REFERENCES Bell EA, Wall GC. Pediatric Constipation Therapy Using Guidelines and Polyethylene Glycol 3350. The ls of Pharmacotherapy. 2004. 686-693 Shah S, Prematta T, Adkinson FN, Ishmael FT. Hypersensitivity to Polyethylene Glycols. J Clin Pharmacol. 8 May 2012. Loeing-Baucke V. Polyethylene Glycol Without Electrolytes for Children with Constipation and Encopresis. J Pediatr Gastr Nutr. April 2002. 34:372-377 Pashankar DS, Loening-Baucke V, Bishop WP. Safety of Polyethylene Glycol 3350 for the Treatment of Chronic Constipation in Children. Arch Pediat Adol Med. July 2003. 661-664 Quote Link to comment Share on other sites More sharing options...
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