Re: Key important points to remember about this group

[Guest guest]

Thank you for your apology. I can respect that =) Many of us did not receive advice that actually worked for our children. I went to many different types of professionals including a Pediatric GI that wanted to continue to see mirilax as the answer. It was not only not helping the overall problem (it was contributing to it in my opinion), but it was also contributing to intense rages in my daughter as a side effect. I discontinued my visits there and found alternatives that actually did work and talking to other parents was essential in that process. As a result, I have a daugther that is happy, healthy and not embarrassed around her peers. She is living her life more carefree as a result of the changes I made and had I continued on w/ the

medical professionals solutions..we would not be here. I had lost my daughter (figuratively) and now she is back. While she still has encopresis and has her own daily needs to help her stay on track, she is in a happy healthy place. I want to ensure you that many of us are intelligent individuals who are making not only educated decisions for our children, but also decisions based on daily experiences with children with the medical issue. The drs. are not seeing what we are seeing. We know what is working and what is not and it's frustrating that the medical professionals are not helping as much as they should. Mirilax is often a one size fits all drug pushed on our kids and long term as if it's ok. That was my experience and I'm so very thankful to have found other mothers who are living this too and who are here as a united group.

Not only is this group emotionally beneficial, but the suggestions from others who can tell you what worked for their children is so very useful. That's not to say we'd blindly make changes based on another's experience, but it gives us alternatives to consider that our drs. were not providing to us. I might ask that you focus your attempts on speaking out to the medical professionals who are not providing helpful alternatives to so many of us. We need a voice of reason to them who has medical knowledge and this medical condition is such a complex one. To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 2:49 PM Subject: Re: Key important points to remember about this group

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

[Guest guest]

Many of us have been burned by the very same medical professionals you'd like us to use to "help us work through some difficult problems" we are facing with our children. We were left on our own because the medical professionals are so incredibly brain-washed over the so-called efficacy of this drug. The medical professionals are bogged down with appointments and patients, mostly IMHO due to drugs like this one. All the terrible side-effects that are not labeled because drugs are pushed into the market without being properly tested lead to forums like this and do not allow medical professionals to properly do their job. They seem to be scrambling at all the issues and offer many ways to band-aid the side-effects rather than truly get to the bottom of a problem. In most of our cases, the problems we are seeing are because of PEG, in whatever form. PEG is a chemical, not meant to be ingested in any form. Don't write back and tell me the FDA approves it at this level or that or in this manner or that because the FDA is not a reliable source, in my eyes. I am TICKED OFF that you would write to us and extoll the virtues of science and bash our own parental instincts. Who do you think you are? We don't need chastising by "two pharmacy students." You, in fact, are the people we are up against. I sarcastically say to you, thank you for so eloquently writing to us and telling us how we don't know anything about our children or what we're doing to them. If you've read the posts carefully and thoroughly, you'd see how many of us, after offering alternative advice, have disclaimered ourselves as NOT being doctors, but the advice we're giving is what worked for us, at the time. Every BODY is different. Non-medical interventions (herbs, remedies, supplements, etc.) are not tested because they depend on too many other factors as to how they affect each body. This is why the discussions say, "This is what worked for us." As parents, we all know we are trying one remedy or another blindly because we are DESPERATE to help our children and the medical professionals are not there for us. Even you, who says you are not pro-Miralax, are trying to defend the science behind it. If a parent comes in to see you about the side-effects of PEG they are seeing affect their child, according to your post here, you would not listen to their problems. Instead, you would throw science at them. That is not what a concerned practitioner does. A concerned practitioner will listen and offer other solutions. That is what this forum does because, unfortunately, those kind of practitioners are few and far between. For those of us lucky enough to have found someone we can trust, we are sharing that information with those who don't have that for their child. You cannot retract what you've said and the hurt you've caused. While you may not have intended to offend anyone, you sure the hell did. Do you have children? Are they negatively affected by PEG? Have you directly experienced the pain of seeing a child have to work through the negative affects of PEG? If not, then be quiet. Leave us to healing our children the way we want to and need to with the advice of people who've been there.

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

[Guest guest]

Your question - I also have a question for you: If Miralax is safe for children, why does the manufacturer say not to use in children 17 and under? If Miralax is safe for long-term use, why does the manufacturer state not to use for longer than 7-10days? Why isn't the manufacturer using the studies you cite to hock this drug officially?Answer - I would gladly take the opportunity to answer your question about the use of Miralax in children. There are several key points to understand about this. First the manufacturer has to state this caution to cover itself from any liabilities. This caution is necessary to

have placed on over the counter medications to prevent patients from using them in a manner that needs to be monitored by a health care professional. To answer your last question, there is no benefit for Miralax to ever acknowledge the studies because it will have no financial benefit to the company. The studies are only beneficial for guiding physicians in using medicine in the safest and most effective manner possible. It is not my goal to protect my profession, only to provide the best and safest information to my patients. I would like to clarify that I do believe that there have been some ideas listed which are great alternatives, for instance I would highly recommend using the lactose-free milk or other alternatives besides dairy milk. I understand that

there are a number of people who are highly concerned about their children and I can appreciate your willingness and desire to seek the best care for your children. As I have stated in another response I do believe that there are many odd side effects that could be attributed to Miralax but I would caution that there are often many confounding factors that need to be considered. Another note about the difference between Miralax (referred to as a chemical) and natural solutions. I would like to let you know that they are both chemicals, one is more refined than another. For instance someone had mentioned Senna tea, it is the same chemical as what is found in OTC stimulant laxatives. It is items like this that I want people to have a better understanding of. Again, I hope that

you all can see that I am coming from a place of concern and not from a place that is against (or not believing) you. To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 2:41 PM Subject: Re: Key important points to remember about this group

If I may add: My daughter was clearly failing to thrive while on Miralax for 8.5 months. She didn't grow an inch nor gain an ounce. In fact, she lost an ounce. This during a period in her development when she should have been growing in length and gaining weight at a measurable pace. She also suffered other side-effects. Once the Miralax was discontinued, she started to grow again, almost immediately. She gained an inch in height the first month she was off Miralax and continues to grow at a healthy clip, but because of the 8.5 months she lost, she is much shorter than ALL of her peers. She is currently 4.5 years old and could easily pass for a 3 year old.I also have a question

for you: If Miralax is safe for

children, why does the manufacturer say not to use in children 17 and under? If Miralax is safe for long-term use, why does the manufacturer state not to use for longer than 7-10 days? Why isn't the manufacturer using the studies you cite to hock this drug officially?As far as I am concerned, this group helped SAVE my child from God knows what else. She now leads a constipation-free life because information I found here and followed allowed her to do so. You mention Senna as being contra indicated for use in children and if you had read ALL of the information exchanged on this board, you would have realized that there have been mention of senna possibly not being good for long-term use, etc., but I'd like to see where it says that it's contraindicated for use in children.I found

myself shaking my head reading your statement. Let me say it again: this discussion board helped save my child. It was not her pediatrician who suggested that I try lactose-free milk (or probiotics or plum smart juice or any number of natural solutions) instead of Miralax. It was someone on this group who did so. Instead of a chemical solution, I found a natural one. It was on this board I learned of all the dietary solutions that worked for her.I understand that as a person who is vested in the pharmaceutical world, you would find yourself trying to defend your profession, but please, don't make unsubstantiated allegations. While we may not be scientists or physicians, we are most certainly NOT hysterical or irrational people. We are concerned parents who witnessed the negative side-effects that this drug had on our children. All of us found this

group while looking for a solution OTHER than Miralax BECAUSE of the side-effects we experienced or witnessed, and most of us thankfully found it and succeeded in saving our children or ourselves from the disturbing side-effects of this drug. Lillu Tesfa To: miralax Sent: Wednesday, June 13, 2012 3:10 PM Subject: Re: Key important points to remember about this

group

I want to ask you the simple question - If Miralax is such a wonderful drug then why does every horrible symptom improve when the drug is removed? I was on the stuff for 3 months and went through hell, I still have dental problems that started at that time.

This is a group of intelligent people that come to give opinions and ask for suggestions for help.

Have you read about the little Bradshaw boy?

From: concernedparent1978@...

Sent: Wednesday, June 13, 2012 1:01 PM

To: miralax

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:REFERENCESBell EA, Wall GC. Pediatric Constipation Therapy Using Guidelines and Polyethylene Glycol 3350. The ls of Pharmacotherapy. 2004. 686-693Shah 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. 34:372-377Pashankar 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

[Guest guest]

Your big mistake was not being honest- like many in your field, you again and again put careers and the almighty dollar ahead of the patient- you have violated this group by your misrepresentation-If you honestly thought this was group of scientists that you could argue theory with, surely that was apparent from day one that you were incorrect- at that point you should have either excused yourself, or introduced yourself.Even the US government expect those who sign up for any type of research study are made fully aware of who will have access to their information- and we all know that the FDA has a track record of being less then up front with the public when it comes to protecting our governments interest from a fiscal perspective. Of course all of us know the risks of participating in a group such as this, but your candor in what you did makes me gasp- I cannot believe that you think any of us would applaud or approve of your dismal behavior- Shame on you.You have done your field a HUGE disservice and I will be forwarding all of your emails and notes to everyone I know(My dear friend is a Professor at our local pharmaceutical school) so that they get a clear picture of the lack of professionalism

that you seem to be being taught.Perhaps you are just looking to make a name for yourself, or looking for a job? Maybe a thesis ? Regardless, this is not the appropriate venue- nor will your misrepresenting yourself lend to your credibility.The New York Times is NOT a medical Journal. It is press for the people. They never represented that this group was anything other then what it was- if you have a bone to pick with the press, do not use innocent people to serve your agenda.The article in the New York Times was no different then if they were talking about Alcoholics and gave AA as a resource. The New York Times has NEVER represented itself as any type of medical research or journal- but perhaps you don't yet

understand the difference between a News paper and an academical journal? Two very different printed resources.I recommend for the success of your career that you focus a bit more on the morality and professionalism of your behavior if you wish to be taken seriously.Diane From:

Concerned Parent To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 2:49 PM Subject: Re: Key important points to remember about this group

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

[Guest guest]

Laurie,Would you please let me know what you've used to help your gaughter to ovecome a constipation and what you are doing for encopresis. I'm fighting with both.thank you,I'll appreciate your advise To: "miralax "

<miralax > Sent: Wednesday, June 13, 2012 3:09 PM Subject: Re: Key important points to remember about this group

Thank you for your apology. I can respect that =) Many of us did not receive advice that actually worked for our children. I went to many different types of professionals including a Pediatric GI that wanted to continue to see mirilax as the answer. It was not only not helping the overall problem (it was contributing to it in my opinion), but it was also contributing to intense rages in my daughter as a side effect. I discontinued my visits there and found alternatives that actually did work and talking to other parents was essential in that process. As a result, I have a daugther that is happy, healthy and not embarrassed around her peers. She is living her life more carefree as a result of the changes I made and had I

continued on w/ the

medical professionals solutions..we would not be here. I had lost my daughter (figuratively) and now she is back. While she still has encopresis and has her own daily needs to help her stay on track, she is in a happy healthy place. I want to ensure you that many of us are intelligent individuals who are making not only educated decisions for our children, but also decisions based on daily experiences with children with the medical issue. The drs. are not seeing what we are seeing. We know what is working and what is not and it's frustrating that the medical professionals are not helping as much as they should. Mirilax is often a one size fits all drug pushed on our kids and long term as if it's ok. That was my experience and I'm so very thankful to have found other mothers who are living this too and who are here as a united group.

Not only is this group emotionally beneficial, but the suggestions from others who can tell you what worked for their children is so very useful. That's not to say we'd blindly make changes based on another's experience, but it gives us alternatives to consider that our drs. were not providing to us. I might ask that you focus your attempts on speaking out to the medical professionals who are not providing helpful alternatives to so many of us. We need a voice of reason to them who has medical knowledge and this medical condition is such a complex one. To: "miralax " <miralax > Sent: Wednesday, June 13, 2012 2:49 PM Subject: Re: Key important points to remember about this group

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

I saw this type of attitude from a family member in the pharmacy field. That person said that it was used all over a hospital with no problems.

After mentioning the petition I was told that nothing would come of it. I would like these 2 “pharmacy students†to live what I have. I have multiple health issues and was pushed to keep on the Peg 33 whatever, “Oh, you will get used to it†After wearing depends to the drug store and breaking down at the pharmacy counter that pharmacist proceeded to tell me to quit and gave me lactulose and dulcolax with Mag Citrate to get over the quick stop on the garbage I was ingesting.

I find it hilarious now that this student is not pro Miralax and says there is no money in following these established studies. I suppose Elvis has been alive all along too.

I am very annoyed that people do this as it may harm the confidence that struggling mothers have right now.

Our group is all people who know the drug first hand and studies should be completed on our members.

From: Lillu

Sent: Wednesday, June 13, 2012 5:35 PM

To: miralax

Subject: 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 PMSubject: 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 PMSubject: 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 PMSubject: 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:REFERENCESBell EA, Wall GC. Pediatric Constipation Therapy Using Guidelines and Polyethylene Glycol 3350. The ls of Pharmacotherapy. 2004. 686-693Shah 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. 34:372-377Pashankar 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

[Guest guest]

My 2yr 7mo daughter

Obsessive

Anxious

non verbal

joined this group, got a case of the OH NO!'s and took her off the Miralax.

Because even though it didn't make any sense to me (I am just an electrical

engineer/graphic designer, what do I know?) I took her off.

Fast forward to a month later:

Not obsessive (phew, we are not running around in circles closing and opening

doors, over and over, and OVER)

Not anxious (phew! We went to a birthday party and she played with other kids

for three hours whereas before she clung to me and cried)

Talking. (*tears* asking me for food, drinks, toys, songs...it is so amazing to

hear my baby communicate)

Coincidence, perhaps. However, I am in NO WAY harming my child by trying to be

more conscience of the food I give her apposed to forcing unnatural chemicals

down her throat.

>

> * 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

>