Re: NYT article

[Guest guest]

http://health.groups.yahoo.com/group/miralax/ From: bbrodley To: miralax Sent: Sat, May 26, 2012 7:37:45 AMSubject: NYT article

I did not find this article to be helpful because it does not list the dangers possible or provide a convincing argument against it's use. Reading this, I would not avoid Miralax for my child. As for our experience, we only used it for three weeks when there was a blockage and we ended up in ER where it was prescribed. But, after those three weeks (some days 3X the adult dose), my son's motility was greatly slowed and a year later it still is being released at the slower speed. It now takes 30 minutes for my son to release stool; prior to Miralax it took about 5 minutes. I am sure that Miralax affected my son's motility and that's enough to make me ban it from our bodies forever; however I would not blame Miralax for anything else ... my son has tics, anxiety, aspergers and possibly a mitochondria disorder and these all came along over the years before Miralax. Like I said, I would never use this chemical concoction again. But I do think

some people on here are blaming Miralax for issues that their child might have had anyway. If someone's child has been on this for a year/years, it's hard for me to believe with certainty that a new non-GI problem being described came from Miralax. Maybe the problem would have developed anyway at that age. Certainly, claiming after several years of use that a new neruological problem is the result of Miralax really does undermine the credibility of this group, in my opinion. I think there is merit to what this group is all about, I'm in agreement this drug is terrible, but some of the posts here pretty far fetched and I just think it reflects poorly on the group. My two cents, sorry to offend anyone. I know it's a struggle to figure out our complicated kids, but there are many reasons why kids can develop non-GI issues.

[Guest guest]

Are you implying we're making up our realities? I'm offended. All my posts about what my family has endured AFTER my son began Miralax are all 100% true. Glad you can see a separation between your son's issues and the drug; seems you are one of the "lucky" ones (if that's possible with neuro issues). And after living through the nightmare we did with Miralax, I can surely believe the stories I've read with this group.If you have to apologize in advance for potentially offending anyone, then don't say it. "...but some of the posts here pretty far fetched and I just think it reflects poorly on the group."

[Guest guest]

I am not trying to make anyone feel attacked. That was my point. Don't know

how I can make that more clear.

>

> " ...but some of the posts here pretty far fetched and I just think it reflects

poorly on the group. "

>

[Guest guest]

Tracie, you wonder if it's possible to see a separation between my son's issues

and the drug -- the answer is yes, because my son was 11 when we first used

Miralax. The anxiety, phobias, tics ... all of these developed over the years

as he matured.

If a parent starts their child with Miralax at a young age, uses it for years,

and then sees new neuro symptoms years later, I personally find it hard to make

the connection.

>

> " ...but some of the posts here pretty far fetched and I just think it reflects

poorly on the group. "

>

[Guest guest]

I have to admit, I agree very much with bbrodley's post.  I, too, am dealing with issues with miralax and usage for my child, but I see way too much scapegoating.  And the response to his post is exactly what I expected, though, to be honest, not as voluminous as I expected.  We need to be careful. 

No one is denying the reality of people's conditions, I don't think.  What you're dealing with is real.  It's causes, though, might not be so clear cut.I do think that we attribute causality to things that we can't prove.  The point made that some of these things would have developed anyway is a valid one, but one that is hard to accept.  It's nicer to have causes.  Discrete, open-and-shut causes.  But often in life, it's just not that simple.  I think Miralax poses several potential issues, but we can't just assume that every symptom that happened after a particular time is necessarily related.  Nor are things that develop years later necessarily related.  Is it possible?  Sure, I think we should allow for that, but I think too often it's stated on here that, " we took miralax, and now... " and that all of those things are definitely attributable to the drug.  Not, " I suspect that... "   It's where emotion, suffering, and logic all collide.  It's a very difficult thing to navigate, but I think his point is taken that if you over-attribute without anything more than anecdotal evidence, then it does make the overall goal look suspect to people who are not familiar with the issue.

[Guest guest]

My son has some neurological issues that have no known cure. Not feeling lucky.

> >

> > " ...but some of the posts here pretty far fetched and I just think it

reflects poorly on the group. "

> >

>

[Guest guest]

Hi Mickey, thanks for expanding on what I tried to say. I agree with everything

you said. We need to be careful regarding what claims are made.

>

> I have to admit, I agree very much with bbrodley's post. I, too, am

> dealing with issues with miralax and usage for my child, but I see way too

> much scapegoating. And the response to his post is exactly what I

> expected, though, to be honest, not as voluminous as I expected. We need

> to be careful.

>

> No one is denying the reality of people's conditions, I don't think. What

> you're dealing with is real. It's causes, though, might not be so clear

> cut.

>

> I do think that we attribute causality to things that we can't prove. The

> point made that some of these things would have developed anyway is a valid

> one, but one that is hard to accept. It's nicer to have causes. Discrete,

> open-and-shut causes. But often in life, it's just not that simple. I

> think Miralax poses several potential issues, but we can't just assume that

> every symptom that happened after a particular time is necessarily

> related. Nor are things that develop years later necessarily related. Is

> it possible? Sure, I think we should allow for that, but I think too often

> it's stated on here that, " we took miralax, and now... " and that all of

> those things are definitely attributable to the drug. Not, " I suspect

> that... " It's where emotion, suffering, and logic all collide. It's a

> very difficult thing to navigate, but I think his point is taken that if

> you over-attribute without anything more than anecdotal evidence, then it

> does make the overall goal look suspect to people who are not familiar with

> the issue.

>

[Guest guest]

Exactly. Some of us are here and want to 'get the word out' because we couldn't

find any information when our children were initially prescribed Miralax. I

DIDN'T KNOW what the dangers were nor that it was not recommended for pediatric

use. We get absolutely nothing from posting here - other than knowing that we

might be providing valuable information to a parent who, like me 8 years ago, is

frantically looking for a way to help her child. At the time that I first came

to this group I had heard that gluten and dairy sensitivity might be correlated

to constipation, but it was after communicating with several mother's here that

I was convinced to give the diet a try. It was a combination of diet, magnesium

and other minerals, vitamins, and senna on occasion that I was able to get my

son off of miralax and finally healthy!

> >

> > I have to admit, I agree very much with bbrodley's post. I, too, am

> > dealing with issues with miralax and usage for my child, but I see way too

> > much scapegoating. And the response to his post is exactly what I

> > expected, though, to be honest, not as voluminous as I expected. We need

> > to be careful.

> >

> > No one is denying the reality of people's conditions, I don't think. What

> > you're dealing with is real. It's causes, though, might not be so clear

> > cut.

> >

> > I do think that we attribute causality to things that we can't prove. The

> > point made that some of these things would have developed anyway is a valid

> > one, but one that is hard to accept. It's nicer to have causes. Discrete,

> > open-and-shut causes. But often in life, it's just not that simple. I

> > think Miralax poses several potential issues, but we can't just assume that

> > every symptom that happened after a particular time is necessarily

> > related. Nor are things that develop years later necessarily related. Is

> > it possible? Sure, I think we should allow for that, but I think too often

> > it's stated on here that, " we took miralax, and now... " and that all of

> > those things are definitely attributable to the drug. Not, " I suspect

> > that... " It's where emotion, suffering, and logic all collide. It's a

> > very difficult thing to navigate, but I think his point is taken that if

> > you over-attribute without anything more than anecdotal evidence, then it

> > does make the overall goal look suspect to people who are not familiar with

> > the issue.

> >

>