Re: Off Miralax and loving it

[Guest guest]

Speaking of experience...I have been in the "mainstream" medical field for many-many-many years.

Doctors are not given enough information about new medications, nor do they take the time to do the

research. They get most of their information from marketing representatives who really don't know

ANYTHING about them either. Aggressive marketing technique and big pharma money get these products

out there before they are completely tested. Whether prescription or OTC, not enough time is given in some cases

and we (or our children in this case) are often the guinea pigs.

IMHO, emotion does not make things less credible. This raw emotion and critical thinking is what is lacking in today's medicine.

You would like to believe that when you make a trip to the doctor's office, you would be able to get well rounded health information.

However, this can never be unless you have done your own research. There is hardly a proactive approach, but mostly reactive.

I'm touched by the sharing/caring of this group and many others like it. While most have given up and trust big

pharma/mainstream medical to do the right thing, I can give you many reasons why this is not the best thing to do. This is why groups such as this

form and there must always be multiple sources to provide independent information. We can't help each other

in the true sense of community without sharing all information and opinion.

Off Miralax and loving it> > To: miralax@yahoogroups .com> > Date: Thursday, January 8, 2009, 1:10 PM> > > > > > > > > > > > > > Hi - my 9 year old son had been on Miralax for 11 months, during > > which time he backed up 3 times and had to undergo many xrays and > > clean outs. It made him so flatulent that the kids at school called > > him Fart Boy. Participation in sports went down because he never > > felt well enough, and this is a kid who's father was a college > > football player. He has a genius IQ but did not make it into the > > gifted program at school because he spent half of the time the test > > was given in the bathroom cramping up thanks to the Miralax. > > > > An endoscopy showed no motility problems, no lactose intolerance, > > and no celiac's disease (or gluten sensitivity) , but he did have > > eosinophilic esophagitis, which wasn't surprising because he's a nut > > allergic kid. He never ingests nuts, but it still wasn't > > surprising. The GI wanted him to stay on Miralax, take Zantac at > > night and Prevacid in the morning. I added the Zantac and Prevacid > > as directed, but immediately stopped the Miralax cold turkey since > > there was clearly no physical cause for his constipation and no > > reason to continue. In the 14 days since stopping it, he has pooped > > 14 times. I upped his fiber intake easily by adding one single > > serving packet of Benefiber to diet root beer that he likes to drink > > two times a day. He drinks a combination of plum juice (3g per 8 > > oz) and white grape juice, and is now as regular as clock work. I am > > so happy to have him off of that drug. He is now HUNGRY a lot of > > the time which he NEVER was on Miralax. He requests second helpings > > now which almost makes me cry because it was such a struggle to get > > him to eat anything while on the Miralax. He was skinny to begin > > with and was literally wasting away before our eyes. He basically > > lost weight over the course of the year he was on Miralax.> > > > Just wanted to share a success story that would never have happened > > without being on this group, and learning about the delay in gastric > > emptying that Miralax causes, the lack of efficacy after 30 days, > > and the increased absorption in constipated kids. Thanks to > > everyone who helped us.> >>

[Guest guest]

BTW - I know what it is like for my child to suffer - that is what has

led me on this odyssey just like all of the other parents here. My

son had also suffered from extremely painful gas and bloating, oxalate

symptoms (painful, burning pooping, penis pain, crystals in urine),

red irritated anus, and rashes on his bottom. Countless children at

these online support groups suffer from these and other symptoms in

common with the children here (see, e.g., the Trying Low Oxalates

group or the Vitamin K group) - yet haven't been on Miralax.

I empahasize that I am NOT trying to belittle your or anyone else's

child's experiences. NOR am I trying to say that Miralax had no part

in the symptoms anyone else's children has experienced.

> > >

> > > From: Kim <ktjackson421@ ...>

> > > Subject: Off Miralax and loving it

> > > To: miralax@yahoogroups .com

> > > Date: Thursday, January 8, 2009, 1:10 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi - my 9 year old son had been on Miralax for 11 months, during

> > > which time he backed up 3 times and had to undergo many xrays and

> > > clean outs. It made him so flatulent that the kids at school called

> > > him Fart Boy. Participation in sports went down because he never

> > > felt well enough, and this is a kid who's father was a college

> > > football player. He has a genius IQ but did not make it into the

> > > gifted program at school because he spent half of the time the test

> > > was given in the bathroom cramping up thanks to the Miralax.

> > >

> > > An endoscopy showed no motility problems, no lactose intolerance,

> > > and no celiac's disease (or gluten sensitivity) , but he did have

> > > eosinophilic esophagitis, which wasn't surprising because he's a

nut

> > > allergic kid. He never ingests nuts, but it still wasn't

> > > surprising. The GI wanted him to stay on Miralax, take Zantac at

> > > night and Prevacid in the morning. I added the Zantac and Prevacid

> > > as directed, but immediately stopped the Miralax cold turkey since

> > > there was clearly no physical cause for his constipation and no

> > > reason to continue. In the 14 days since stopping it, he has pooped

> > > 14 times. I upped his fiber intake easily by adding one single

> > > serving packet of Benefiber to diet root beer that he likes to

drink

> > > two times a day. He drinks a combination of plum juice (3g per 8

> > > oz) and white grape juice, and is now as regular as clock work.

I am

> > > so happy to have him off of that drug. He is now HUNGRY a lot of

> > > the time which he NEVER was on Miralax. He requests second helpings

> > > now which almost makes me cry because it was such a struggle to get

> > > him to eat anything while on the Miralax. He was skinny to begin

> > > with and was literally wasting away before our eyes. He basically

> > > lost weight over the course of the year he was on Miralax.

> > >

> > > Just wanted to share a success story that would never have happened

> > > without being on this group, and learning about the delay in

gastric

> > > emptying that Miralax causes, the lack of efficacy after 30 days,

> > > and the increased absorption in constipated kids. Thanks to

> > > everyone who helped us.

> > >

> >

>

[Guest guest]

I'd like to add that my daughter who was on Miralax for about a year and has been off of it for a couple of weeks has had an increase in appetite ever since we stopped the Miralax. We added the Natural Calm but have not changed anything else in her diet. She is eating much better and has even gained a pound which is wonderful because she is underweight (below average). SimonaTo: miralax Sent: Thursday, January 8, 2009 8:05:34 PMSubject: Re: Re: Off Miralax and loving it

, she clearly stated her child was Miralax for 11 months and described what happened to him......... .....I was simply pointing out, for her knowledge, that she isn't the first person to describe what was happening to her son. People cannot know that their child's symptoms could be coming from a medication if there doctors don't know a thing about what they're prescibing and it's not on the label....... ......... ....That' s why you can obtain the Freedom of Information Act AERS reporting system to find out......... .....There are so many Ah...ha moments on here and so many connections just from everyone talking to each other finding out they all are having the same side affects. Many, many people have told me, "thank you, I never made the connection.. .......... ..because the doctor told me that it couldn't be coming from this"

I believe she titled it.......... ...Off Miralax and loving it

From: littlelief <littleliefhotmail (DOT) com>Subject: Re: Off Miralax and loving itTo: miralax@yahoogroups .comDate: Thursday, January 8, 2009, 9:50 PM

Jeanie - Many kids are diagnosed with "failure to thrive" who have NEVER takenMiralax. I totally understand that you and many others feel that yourchild has been injured by this drug and I feel for each of you. I dobelieve the possibility of EG toxicity and oxalate issues is aplausible concept. I also think it is a travesty that Miralax isbeing used so freely and carelessly in children by mainstream medicalpractitioners. I am thankful every day that my kids never got thestuff despite it being 'prescribed' for them. But please realize that not everyone who joins this group has usedMiralax for their children and not every issue that the children ofparents here may have been diagnosed with can be traced to Miralax. We should all remember that our children had constipation prior to anytreatment (Miralax or other). Thus, they had *something*physiologically going wrong well before receiving

Miralax or otherdrug. Until that issue(s) is addressed one cannot know what effectthe underlying cause of the constipation was having and what effectthe Miralax may have exacerbated or caused. best,> > From: Kim <ktjackson421@ ...>> Subject: Off Miralax and loving it> To: miralax@yahoogroups .com> Date: Thursday, January 8, 2009, 1:10 PM> > > > > > > Hi - my 9 year old son had been on Miralax for 11 months, during > which time he backed up 3 times and had to undergo many xrays and > clean outs.. It made him so flatulent that the kids at school called > him Fart Boy. Participation in sports went down because he never > felt well enough, and this is a kid who's father was a college > football player. He has a genius IQ but did not make it into the > gifted program at school because he spent half of the time the test > was given in the bathroom cramping up thanks to the Miralax. > > An endoscopy showed no motility problems, no lactose intolerance, > and no celiac's disease (or gluten sensitivity) , but he did have > eosinophilic esophagitis, which

wasn't surprising because he's

a nut > allergic kid. He never ingests nuts, but it still wasn't > surprising. The GI wanted him to stay on Miralax, take Zantac at > night and Prevacid in the morning. I added the Zantac and Prevacid > as directed, but immediately stopped the Miralax cold turkey since > there was clearly no physical cause for his constipation and no > reason to continue. In the 14 days since stopping it, he has pooped > 14 times. I upped his fiber intake easily by adding one single > serving packet of Benefiber to diet root beer that he likes to drink > two times a day. He drinks a combination of plum juice (3g per 8 > oz) and white grape juice, and is now as regular as clock work. I am > so happy to have him off of that drug. He is now HUNGRY a lot of > the time which he NEVER was on Miralax. He requests second helpings > now which almost makes me cry because it was such a

struggle to get > him to eat anything while on the Miralax. He was skinny to begin > with and was literally wasting away before our eyes. He basically > lost weight over the course of the year he was on Miralax.> > Just wanted to share a success story that would never have happened > without being on this group, and learning about the delay in gastric > emptying that Miralax causes, the lack of efficacy after 30 days, > and the increased absorption in constipated kids. Thanks to > everyone who helped us.>