Re: bacteria repsonsible for complications

[Guest guest]

I think this is a bit selective. prior to your quote he also says

'The most likely cause of the complciations and deaths would seem to have been

an inadequacy of fluid and eletrolyte and gastrointesitnal management before,

during and/or after the adminstration of the Golytely. '

Two of the three patients also had renal failure and were on dialysis so the

inadequacy of hydration would have been a particular problem for them.

Rosemary

NZ

>

> Doesn't this quote put up red flags to anyone about the fact that this

gentlemen is saying that if there was bad bacteria in the gut mcosal, that

complications can happen? They know more than we're being told. Jack, this

article is the one you shot down, saying they all had underlying conditions. But

according to the rapid responses, this gentlemen had this to

say..................

>  

> I find it difficult to believe that intestinal secretion was the cause of the

complications or deaths unless these patients had the unappreciated presence of

gut mucosal ischaemia or bacterial infection such as C difficle.

> http://www.bmj.com/cgi/eletters/326/7385/382#29665

>  

>  

> Therefore it's the bacteria in the gut that changes everything.  Also, he says

he finds it difficult to believe that intestinal secretion was the

cause............He doen't know for a fact. None of them know, this is why we

were all involved in this " we don't know " study, so they could find out. Using

our children!!!!

> Jeanie 

>

[Guest guest]

In all fairness though, just how many parents are told or even how many doctors do regular checks on the electrolyte and fluid issues(not one account that I know of). Also it is over the counter now, this is a scary thought for me. I suspect with what happened to my son happens a lot(potassium drops/heart issues) with many user's of PEG and know one connects the dots. We was very blessed in that we was already at hospital for something and they caught this issue with him. None of these warnings are on the labels. If doctors or manufactors are going to make/prescribe drugs than they should do so with the up most care for every single human using them and they dont. PEG causes hydration/electrolyte issues. My son lost his desire for fluids after he was on peg for a while(turned the switch off I believe). I now have to syringe fluids in him all day or tube him.

Many parents over the years in this group have reported there children loose interest in drinking/fluids. Jennie<><Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 12:02 PM

I think this is a bit selective. prior to your quote he also says

'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. '

Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.

Rosemary

NZ

>

> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........

>

> I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle.

> http://www.bmj. com/cgi/eletters /326/7385/ 382#29665

>

>

> Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause........ .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!

> Jeanie

>

[Guest guest]

OR, even when they do checks on electrolytes, they don't manage it properly. In my own case, when my heart issue surfaced (not Miralax-related) and my electrolytes were checked and all was fine, the (idiot) cardiologist wanted to push my water intake telling me I wasn't getting enough water. If I had followed his advice, what state would I have been in after ingesting too much water? Regardless of explaining to him that I track my water intake and was getting a very good amount of water (I'm an endurance athlete), he still pushed it. I adamantly refused, he became beligerent and I fired him. Good thing, as it turns out if I would've followed his simple advice I would be dead as there was/is an underlying cause. Doctors are not perfect in any way, shape or form. They follow the protocol set by the insurance industry, their clinic and the AMA. Their hands are tied and they are often too busy to do research on their own. The more we can educate, with real research and our own personal stories, the better everyone will be as the trickle-down effect happens. In all fairness though, just how many parents are told or even how many doctors do regular checks on the electrolyte and fluid issues(not one account that I know of). Also it is over the counter now, this is a scary thought for me. I suspect with what happened to my son happens a lot(potassium drops/heart issues) with many user's of PEG and know one connects the dots. We was very blessed in that we was already at hospital for something and they caught this issue with him. None of these warnings are on the labels. If doctors or manufactors are going to make/prescribe drugs than they should do so with the up most care for every single human using them and they dont. PEG causes hydration/electrolyte issues. My son lost his desire for fluids after he was on peg for a while(turned the switch off I believe). I now have to syringe fluids in him all day or tube him. Many parents over the years in this group have reported there children loose interest in drinking/fluids. Jennie<><From: rose <aceplugsgmail>Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 12:02 PM I think this is a bit selective. prior to your quote he also says'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. 'Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.RosemaryNZ>> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause........ .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!> Jeanie >

[Guest guest]

Rose, that's what the medication does, it pulls water and electrolytes to the gut, therefore the condition itself is from the medication. My point exactly............it's dangerous stuff

Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 2:02 PM

I think this is a bit selective. prior to your quote he also says'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. 'Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.RosemaryNZ>> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you

shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!>

Jeanie >

[Guest guest]

http://www.nlm.nih.gov/medlineplus/ency/article/000394.htm

http://en.wikipedia.org/wiki/Hyponatremia---

Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 2:02 PM

I think this is a bit selective. prior to your quote he also says'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. 'Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.RosemaryNZ>> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you

shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!>

Jeanie >

[Guest guest]

Dysnatremia, maybe this could explain how this medication works

http://www.clinchem.org/cgi/reprint/34/11/2239.pdf---

Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 2:02 PM

I think this is a bit selective. prior to your quote he also says'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. 'Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.RosemaryNZ>> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you

shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!>

Jeanie >

[Guest guest]

I would also like to point out that I spoke to the genlemen Ayus who wrote this article and I suggested to him that this article titled, "Fatal Dystnatremia caused by Elective colonoscopy" should have been titled, "Fatal Dysnatremia caused by Polyethylene Glycol" in which he ageed, however, he added that he titled it this way because they were studying effects of colonoscopies. And they wrote it trying to market people who would be inquiring about a colonoscopy. Therefore the above statement is politically correct. It was caused by PEG. I'll repost the article so you can read it..................

Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Wednesday, January 13, 2010, 2:02 PM

I think this is a bit selective. prior to your quote he also says'The most likely cause of the complciations and deaths would seem to have been an inadequacy of fluid and eletrolyte and gastrointesitnal management before, during and/or after the adminstration of the Golytely. 'Two of the three patients also had renal failure and were on dialysis so the inadequacy of hydration would have been a particular problem for them.RosemaryNZ>> Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you

shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!>

Jeanie >

[Guest guest]

I do understand how the medication works and the implications of fluid and

electrolyte imbalances, etc.

The thing is adding 2+2 togher and always coming to PEG is completely

misleading. There are many medications including diuretics, osmotic laxatives,

fleet and many many more that can alter electrolytes and fluids in the

body.Quite frankly many more children and adults have suffered serious

complications from the use of Fleet phosphate enemas than from miralax and it

has a far worse track record for electrolyte problems than miralax.

The answer is not to throw out all these meds. It is to more carefully monitor

hydration and electrolyte levels in these patients.

Particularly when they have pre existing conditions, eg renal failure and many

others, that make them more vulnerable to these imbalances.

If water and electrolytes are being lost due to any medication it is not rocket

science that they then need to be replaced intravenously.

Posting multiple links and selectively quoting in an attempt to 'blind them with

science' is not really helping your cause.

You have a bunch of people here that don't like miralax, but there's a bunch

more who would rather not use it if they don't absolutely have to and would like

information on alternatives and ways to get off whatever medication they are

using, or at least move to one less strong.

Constantly posting links that you infer say one thing, when in fact, taken in

context don't say anything of the sort, and making assumptive leaps regarding

causative associations, doesn't add credibility to your arguments.

You are preaching to the converted for the most part but clearly there are

others who would really prefer the facts, rather than selected 'facts' clouded

by emotion.

You assume they are on a 'different side', when the reality is that everyone is

starting from the idea that they don't want to give their children medication at

all. For some of us though, the end sometimes justifies the means at the time.

The them and us approach that seems to characterise this group is one that is

not doing it any favours if you really want serious discussion and scientific

knowledge regarding miralax to be recognised, as opposed to emotive

scaremongering.

I know that you and others have had bad experiences with miralax, but there are

probably thousands more whose children have had similar serious events with

fleet. Their usual reaction is not to say 'ban Fleet for everyone'. It is to say

that Fleet doesn't suit my child so we won't be using it again or to warn

against using it in children that have specific other conditions.

Rosemary

New Zealand

Mum to and 15, NID,

Appendicostomy/Malone/ACE, Hypertonic

sphincter, Sphincterotomy, Botox Feb 2008, Dyspraxia,

Growth issues. July 2008 Started Interferential Therapy, October 2008….we have

Poop! No more flushes since.

Nov 2008, Scoliosis, pectus excavatum.

> >

> > Doesn't this quote put up red flags to anyone about the fact that this

gentlemen is saying that if there was bad bacteria in the gut mcosal, that

complications can happen? They know more than we're being told. Jack, this

article is the one you shot down, saying they all had underlying conditions. But

according to the rapid responses, this gentlemen had this to say.........

..........

> >  

> > I find it difficult to believe that intestinal secretion was the cause of

the complications or deaths unless these patients had the unappreciated presence

of gut mucosal ischaemia or bacterial infection such as C difficle.

> > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665

> >  

> >  

> > Therefore it's the bacteria in the gut that changes everything.  Also, he

says he finds it difficult to believe that intestinal secretion was the

cause....... .....He doen't know for a fact. None of them know, this is why we

were all involved in this " we don't know " study, so they could find out. Using

our children!!!!

> > Jeanie 

> >

>

[Guest guest]

Rose, I understand that many people have complication with medications. 3000 people die every year from taking asprin. They have a choice knowing this. Children do not have a choice. We are simply giving everyone on here the heads up on what we found. Plastic water bottles leach BPA in our systems, this is no secret and they are transitioning our world to avoid them, after the fact they allowed this to be for so long, so what do you think a liquid plastic is going to do to a child that's one molecule away from ethylene glycol?

We are simply trying to share the information we found, we would have been so grateful for, had someone given us the infomation before we were told to give this to our children and share with others the dangers we found out because it damaged our children. I'm sorry you don't appreciate it.

Jeanie

Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Thursday, January 14, 2010, 2:35 PM

I do understand how the medication works and the implications of fluid and electrolyte imbalances, etc.The thing is adding 2+2 togher and always coming to PEG is completely misleading. There are many medications including diuretics, osmotic laxatives, fleet and many many more that can alter electrolytes and fluids in the body.Quite frankly many more children and adults have suffered serious complications from the use of Fleet phosphate enemas than from miralax and it has a far worse track record for electrolyte problems than miralax.The answer is not to throw out all these meds. It is to more carefully monitor hydration and electrolyte levels in these patients. Particularly when they have pre existing conditions, eg renal failure and many others, that make them more vulnerable to these imbalances.If water and electrolytes are being lost due to any medication it is not rocket science that they then need to be replaced

intravenously.Posting multiple links and selectively quoting in an attempt to 'blind them with science' is not really helping your cause.You have a bunch of people here that don't like miralax, but there's a bunch more who would rather not use it if they don't absolutely have to and would like information on alternatives and ways to get off whatever medication they are using, or at least move to one less strong.Constantly posting links that you infer say one thing, when in fact, taken in context don't say anything of the sort, and making assumptive leaps regarding causative associations, doesn't add credibility to your arguments.You are preaching to the converted for the most part but clearly there are others who would really prefer the facts, rather than selected 'facts' clouded by emotion.You assume they are on a 'different side', when the reality is that everyone is starting from the idea that they don't want to give their

children medication at all. For some of us though, the end sometimes justifies the means at the time.The them and us approach that seems to characterise this group is one that is not doing it any favours if you really want serious discussion and scientific knowledge regarding miralax to be recognised, as opposed to emotive scaremongering.I know that you and others have had bad experiences with miralax, but there are probably thousands more whose children have had similar serious events with fleet. Their usual reaction is not to say 'ban Fleet for everyone'. It is to say that Fleet doesn't suit my child so we won't be using it again or to warn against using it in children that have specific other conditions.RosemaryNew ZealandMum to and 15, NID,Appendicostomy/ Malone/ACE, Hypertonicsphincter, Sphincterotomy, Botox Feb 2008, Dyspraxia,Growth issues. July 2008 Started Interferential Therapy, October

2008….we have Poop! No more flushes since.Nov 2008, Scoliosis, pectus excavatum.> >> > Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you shot down, saying they

all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........> >  > > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle. > > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665> >  > >  > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!> > Jeanie >

>>

[Guest guest]

Hi,

I'd like to chime in here at this point. I have been a member of this group for

a little under 2 weeks, but a member of forums on constipation management for

over 3 yrs. My son is anatomically different to most children, and his

constipation is caused by his anorectal malformation. There is no " cure " for

this anymore than there is an established reason why this occured at 5-7 weeks

in utero.

I find the constant bickering and adversarial biased responses about how

poisonous this treatment can be, quite disconcerting.

I don't want to appear " inappreciative " , I want to feel informed in a balanced

and unbiased way.

I find that some of the the posts have a hostile approach, and me for that

behaviour is unacceptable, inappropriate and downright rude.

Is this a forum for discussion about constipation and alternatives to Miralax or

a way to shoot down anyone who holds a differing view?

I guess the only way to judge is to see how many people decide that this forum

is not for them or in my case, that I don't want to feel like I am endangering

my child because I have to administer something where there are no alternatives.

My sons situation is such that no amount of " natural " vitamins, minerals, diet,

fluids or juice makes one skerrick of difference in helping him have a normal

life and pooing independantly.

Thanks to Jack and Rose for offering alternative viewpoints to the scaremongers

who dominate this forum.

Bridgette

Melbourne, Australia

> > >

> > > Doesn't this quote put up red flags to anyone about the fact that this

gentlemen is saying that if there was bad bacteria in the gut mcosal, that

complications can happen? They know more than we're being told. Jack, this

article is the one you shot down, saying they all had underlying conditions. But

according to the rapid responses, this gentlemen had this to say.........

..........

> > >  

> > > I find it difficult to believe that intestinal secretion was the cause of

the complications or deaths unless these patients had the unappreciated presence

of gut mucosal ischaemia or bacterial infection such as C difficle.

> > > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665

> > >  

> > >  

> > > Therefore it's the bacteria in the gut that changes everything.  Also,

he says he finds it difficult to believe that intestinal secretion was the

cause....... .....He doen't know for a fact. None of them know, this is why we

were all involved in this " we don't know " study, so they could find out. Using

our children!!!!

> > > Jeanie 

> > >

> >

>

[Guest guest]

Bridgette, Im sorry to hear this about your son! Please understand no one here is trying to be scaremongers, we are just sharing information on the possible dangers and alternatives if able. That is what this group is for, not to encourage the use but to help others try other means! Other means are not always possible but should that mean we need to encourage the use. That would be non productive. Many of us used miralax for years and still are but want to learn other means "ïf possible". But we well not promote the use of PEG! I understand that feeling of medicating a child with medications that may be dangerous, it feels horrible. My son is on Reglan and Im sure you have heard or seen the attorney commercials for it. My heart sinks every time I see them but yet we have no choice at this point. I would give anything to find a more safe or natural means.. But

this doesnt make me in denial or angry at those that would state the dangers or even worse, the last thing I would do is talk another parent into using it! If there was a group who dedicated to learning the dangers and alternatives for reglan as this group has done so well for PEG over the years, I would be greatful! Jennie<><Subject: Re: bacteria repsonsible for complicationsTo: miralax Date: Friday, January 15, 2010, 2:11 PM

Hi,

I'd like to chime in here at this point. I have been a member of this group for a little under 2 weeks, but a member of forums on constipation management for over 3 yrs. My son is anatomically different to most children, and his constipation is caused by his anorectal malformation. There is no "cure" for this anymore than there is an established reason why this occured at 5-7 weeks in utero.

I find the constant bickering and adversarial biased responses about how poisonous this treatment can be, quite disconcerting.

I don't want to appear "inappreciative" , I want to feel informed in a balanced and unbiased way.

I find that some of the the posts have a hostile approach, and me for that behaviour is unacceptable, inappropriate and downright rude.

Is this a forum for discussion about constipation and alternatives to Miralax or a way to shoot down anyone who holds a differing view?

I guess the only way to judge is to see how many people decide that this forum is not for them or in my case, that I don't want to feel like I am endangering my child because I have to administer something where there are no alternatives. My sons situation is such that no amount of "natural" vitamins, minerals, diet, fluids or juice makes one skerrick of difference in helping him have a normal life and pooing independantly.

Thanks to Jack and Rose for offering alternative viewpoints to the scaremongers who dominate this forum.

Bridgette

Melbourne, Australia

> > >

> > > Doesn't this quote put up red flags to anyone about the fact that this gentlemen is saying that if there was bad bacteria in the gut mcosal, that complications can happen? They know more than we're being told. Jack, this article is the one you shot down, saying they all had underlying conditions. But according to the rapid responses, this gentlemen had this to say......... .........

> > > ÂÂ

> > > I find it difficult to believe that intestinal secretion was the cause of the complications or deaths unless these patients had the unappreciated presence of gut mucosal ischaemia or bacterial infection such as C difficle.

> > > http://www.bmj. com/cgi/eletters /326/7385/ 382#29665

> > > ÂÂ

> > > ÂÂ

> > > Therefore it's the bacteria in the gut that changes everything. Also, he says he finds it difficult to believe that intestinal secretion was the cause....... .....He doen't know for a fact. None of them know, this is why we were all involved in this "we don't know" study, so they could find out. Using our children!!!!

> > > JeanieÂÂ

> > >

> >

>