Re: info

[Guest guest]

Hi. My son had the same problem with the extremely hard stool. I also had to always "dig it out" and there was bleeding and he was terribly in pain every single time. My son was around a year old when Mirilax was prescribed and a little younger than 2 when I stopped it. I read that the prolonged use of mirilax could cause many symptoms...such as autistic and obsessive compulsive like symptoms....also it was not recommended for children at all. Ever since I stopped giving my son milk, his stool has been much looser...I have cut out alot of dairy and it seems to help....also Gerber pear juice works too.

-----Original Message-----From: Jodi Fucili Sent: Wednesday, September 08, 2004 10:16 AMTo: miralax Subject: info

I hope to find out all anyone knows about the use of Miralax in children.

My son, now 4, has been on Miralax since he was about 18 months old.

He was so impacted he would try to poop and I would have to, pardon me, "dig it out". The docs here told me it is normal for babies to be constipated so give him mineral oil. I knew this wasn't right. He was pooping, not pooping, larger than golf ball size. It was killing him to even try.

I demanded to see a specialist. They sent us to Duke Medical Center. We found he had a kink in his colon. Instead of being only curved down, it first curves upward then back down creating a pocket (kind of like a drain pipe of a sink) where the waste gets stuck, hardens and then is almost impossible to get out. He was prescribed Miralax. I had to play with the amount. If I gave the prescribed amount it made him totally loose. I then found a happy medium. Yet, from time to time he still gets backed up and complains of stomach aches. We ended up in the ER last Sunday due to immense pain and screaming and found him backed up once again.

When the doctor told me Miralax was a laxative, etc. I told him my doctors had said despite the name, it was not, just a stool softener. He said to discuss that and how long he should be on it with my doctors. It was like he didn't want to step on any toes.

I then began to research Miralax online and found they do call it a laxative and it hasn't even been approved for children. I worry about the effects on his colon and digestive system. If he is on it so long will his system become addicted and not able to function on its on, etc.?

Does anyone out there have any information or advise on other ways to help him "poop" without the use of the Miralax?

Blessings,

Jodi Fucili

[Guest guest]

Hi Jodi--I'm going to put my comments in your text with **** marks

preceding them...read thru till you see my signature...

The docs here told me it is normal for babies to be constipated so

give him mineral oil.

**** yes some constipation can be normal for babies BUT when your

child is getting backed up to the point of having to dig it out, THAT

is not normal. That is, normal colons will get backed up slightly

with lack of fiber and moisture, BUT eventually the colon WILL begin

to step up the peristalsis (the contractions of the gut) and will

move that stool out. Might be rather large and uncomfortable, but it

WILL come out. Generally most babies bodies will " right themselves "

and constipation will only be an occassional thing. But with kids

like yours, their bodies don't seem to get back on track and this

constant constipated state just leads to a vicious cycle... the stool

stays in, the colon walls get a bit stretched out, more stool backs

up, and it just repeats itself. Then, if the child becomes fearful

of passing stool, then that adds another factor into the cycle. BUT,

I think that many docs are quick to say that the child's fear is the

cause of the problem... I disagree. IF the child hadn't had a

problem in the first place, then they wouldn't have ever become that

backed up and the fear wouldn't have set in. Also, I think that kids

bodies can sense when a stool is coming out easily and when they feel

that, then they are not afraid to push out that stool. The problem

with some of these kids is, I think, that they are not even getting

an accurate " signal " or urge to go. Sometimes that urge is fleeting--

they have the urge but then a second or two later, it's gone.

I knew this wasn't right. He was pooping, not pooping, larger than

golf ball size. It was killing him to even try.

> I demanded to see a specialist. They sent us to Duke Medical

Center. We found he had a kink in his colon. Instead of being only

curved down, it first curves upward then back down creating a pocket

(kind of like a drain pipe of a sink) where the waste gets stuck,

hardens and then is almost impossible to get out.

***** My son's x-rays were like this, too. BUT, I think again that

over time, if the stool can be moving out daily then the tone of the

GI tract *might* be restored. My son's scenario was that after

miralax he had a burning sensation whenever he would go, and so he'd

ask us for a " cool squirt " , meaning a cool squirt of water--just a

tablespoon or less really. My dh and I were so worried that this was

ruining his gut and his ability to " go " . This went on for a loooong

time. When I looked into metal toxicity issues and how metal affects

the colon, then I was able to have a doctor (a naturopathic doctor)

work with us on chelating some of the metals out. Once we did that,

then voila, he no longer asked for that cool squirt and constipation

was a thing of the past. Now, I haven't figured out my daughters

issues... hers are probably more similar to your child's in that the

stool gets very balled up, very huge, and I just do not know why. I

am thinking it is probably something similar to what they call IBS in

adults--you know those commercials for zelnorm for women--IBS with

constipation.

He was prescribed Miralax. I had to play with the amount. If I

gave the prescribed amount it made him totally loose. I then found a

happy medium. Yet, from time to time he still gets backed up and

complains of stomach aches.

**** It could be that there was still old stool that the newer looser

stool was able to travel around, and so as it's coming down, it is

crampy. But yes, I kwym because when Ethan was on lactulose, it was

the same thing--he was going just fine, daily, but then about six

months later or so, he was backed up again and we did not know why

that could have happened. I also wonder if these kids colons do not

get a " full " bowel movement out each time. I wonder if they are

getting only a partial movement out, and thus, over time, the system

is backed up again.

We ended up in the ER last Sunday due to immense pain and screaming

and found him backed up once again.

> When the doctor told me Miralax was a laxative, etc. I told him my

doctors had said despite the name, it was not, just a stool

softener. He said to discuss that and how long he should be on it

with my doctors. It was like he didn't want to step on any toes.

> I then began to research Miralax online and found they do call it a

laxative and it hasn't even been approved for children.

**** Well, it is a laxative, but it is not considered a " stimulant "

laxative like senokot or cascara sagrada... it is considered

an " osmotic laxative " if my memory serves me correctly. Osmotic

means that it holds water in the colon. By holding the water in the

stool then as the body senses a larger mass in there then it begins

to do it's job and the stool is supposed to come through.

I worry about the effects on his colon and digestive system. If he

is on it so long will his system become addicted and not able to

function on its on, etc.?

**** I don't know as addiction is really the right word. I think

what miralax and other laxatives do is that they mask the original

reason why the person is constipated. They treat the symptom not the

cause. So yes, people who are on miralax for a long time, when they

try to wean off, they find that they can't go still. The miralax

never corrected the underlying problem. Read back a few msg's to my

post about my friends daughter who went to Pfeiffer Treatment Center

in Illinois. Years and years of constipation have been resolved with

voila, some testing to figure out what she is deficient in, and then

by giving her the vitamin supplements that she was deficient in, in

proportion to what she needed, then she's going daily. My friend is

so upset with the GI doc " profession " because here she was told for

so long that her kid was constipated because she just didn't want to

poop, was afraid to poop, etc etc and by looking at the deficiencies,

now she is going no problemo. Why can't the GI profession look at

what Pfeiffer does and also do that testing on kids??? Well, I'll be

cynical and say that IMO it's the pressure from pharmaceutical

companies to prescribe " things " for people. If we got to the root of

the constipation, people wouldn't need these " things " and thus, their

profit margins would go down. Now, I'm not saying this is Braintree,

I'm just saying " pharmaceutical " in general.

> Does anyone out there have any information or advise on other ways

to help him " poop " without the use of the Miralax?

***** Each child is different. I wish I had the answers. If you

find that miralax helps for the time being and you don't see any

neuro changes on it, then perhaps use it but perhaps just use it for

clean-out periodically. Especially since you are already finding

that daily use still isn't really keeping him from getting backed

up. If you have a chance, look on the internet for Pfeiffer

Treatment Center and see if you can contact them about what kinds of

tests they do. For my own daughter, I did once have her on a mix of

supplements that worked just great--she was going daily, having urges

and making it to the toilet, but then something changed in her system

and then it no longer helped. It's been that way with whatever we

have tried to help her... acupuncture--worked for a while, then

stopped, etc. It's so odd because when these things were working,

her stools were completely normal and like I said, normal urges and

everything. When her body goes back to the way it was, then

everything goes back to being pellets or large balls and full of

mucous strands, and she has NO urges to go on her own. A week or so

can go by with no urges. It's like the colon just isn't moving stuff

out and the body is trying to compensate by making more mucous to

help it out but that's just not working either... so I wish I had the

magic answer for you but I don't.

W

> Blessings,

> Jodi Fucili

[Guest guest]

Well, let me clarify--it's not that the prolonged used of miralax can

cause many symptoms like autistic or obsessive compulsive... for some

kids these issues happen within the first few days of being on

miralax. But again, let me stress that this isn't happening to ALL

kids on miralax. It appears to be only some kids and I do not yet

know for sure what the common link is. I had thought that it could

be the higher degree of intestinal permeability ( " holes " in the GI

tract that are larger than normal)... but part of me is now also

wondering about whether there is an effect of polyethylene glycol on

viruses that are being harbored within the GI tract, and/or certain

strains of bacteria. Because again, many kids with autism have leaky

gut issues but not all kids with autism are regressing while on

miralax. However, if their autism was severe enough, would the

family even " know " that this was happening. That is, my son was only

having some mild sensory dysfunction prior to miralax, so when I saw

all sorts of problems happening while he was on it, and they kept

getting worse the longer he was on it, *I* was able to see that. If

a more severe autistic child is on the product and they're already

having neurological problems related to the autism, someone might not

even notice the neuro probs from the miralax. I just *wish* that the

manufacturer would take some interest in wanting to know more about

this population of kids who have done poorly on miralax and would

take more of an interest in figuring out *why* it affects *some*

kids.

Also, I don't have the current label on the bottle, but it's not

uncommon for meds to be used " off label " meaning, meds can be used

for purposes other than what they were intended and in populations

that are different than what the label says--that is what off label

use is and that is what I think miralax is still considered for kids--

off label. At least, I am pretty sure that when kids are on it

longer than the time recommended on the label, that again, that falls

into the off-label use category.

No medicine is 100 percent safe for 100 percent of the population.

So it does irk me when I hear some doctors present Miralax as such.

That's irresponsible. Miralax may be " safe " for the majority of the

population, but it can never be considered 100 percent safe.

Yes, you've touched on the food/diet issue and how it relates to

constipation. For those that have young kids with constipation who

aren't in school yet, trying a modified food " diet " can sometimes

take care of the constipation. That is, I don't mean diet as

reduction in calories but rather just the types of food that are

eaten. Two diets to consider are gluten-free-casein-free and also

the specific carbohydrate diet. Diets get harder as kids are older

and in school and you can't always be there to control whether they

eat that one food or not, but in younger kids with severe

constipation it is a little easier to approach. Yes, I'm told time

and time again about the connection between the foods, how the gut

reacts to those foods, and the subsequent constipation that can

happen from eating foods that the body is sensitive to.

W

> Hi. My son had the same problem with the extremely hard stool. I

also had to always " dig it out " and there was bleeding and he was

terribly in pain every single time. My son was around a year old

when Mirilax was prescribed and a little younger than 2 when I

stopped it. I read that the prolonged use of mirilax could cause

many symptoms...such as autistic and obsessive compulsive like

symptoms....also it was not recommended for children at all. Ever

since I stopped giving my son milk, his stool has been much

looser...I have cut out alot of dairy and it seems to help....also

Gerber pear juice works too.

>