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What’s the deal with this stuff??

My 7yr old ds won’t go unless I make

him. He says he can’t feel it at all. I make him go every day after

school (or same time on weekends). He gets mad and says he doesn’t have

to, but he’s not allowed to get up until I check and 99% of the time,

there’s a significant amount.

If I forget to make him go, he’ll

stink and have stains in his underwear.

Can you try forcing him into a daily

routine?

From:

[mailto: ] On

Behalf Of gngrbnks

Sent: Thursday, May 28, 2009 12:20

PM

To:

Subject: ( ) Potty

issues/stimmies

My 7 yr old with AS loves to hold his poop. When he

feels the need to poop, he will go off in a corner and cross his legs to keep

it in. I hear him grunt and tell him to use the bathroom, and he will say he

doesn't need to go, as his face is bright red with concetration. He does this

everywhere, including at school. This was his first major symptom, and I've had

him to doctors and counselors over the last four years. There are no medical

causes, and apparently no psychological or emotional causes, other than the

fact that he LIKES the feeling of poop needing to come out. Our Family Based

therapists say he is " stimming " when he holds his poop.

The problem is, I got the umpteenth call from the school today, that soon they

will not put up with this. Kids are complaining that he smells of poop and pee

and are making fun of him. He recognizes that kids don't want to play with him,

but he thinks they just don't like him, not that he smells. I've tried a

million and one different methods to break him of this, and nothing is working.

The school does not feel at this point that he needs special classes, because

his grades are okay. His therapists do not feel he meets the criteria for an in

school therapeutic support staff. And at this point, I can't homeschool my kids.

So what do I do?

Has anyone dealt with this type of thing successfully?--Ginger

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>

> What's the deal with this stuff??

I think there may be different issues going on with different kids. My son had

problems with this in elementary school for two reasons. One, he is squeamish

and didn't feel comfortable using the school bathroom. Two, he has sensory

issues and had difficulty telling the difference between tummyaches, being

hungry, and having to go to the bathroom until he was pretty old. He learned

gradually throughout elementary school.

I have two more thoughts on this. :) One, an occupational therapist may be

able to help if it is sensory. Two, if the child will go on demand, you ought

to be able to get accommodations at school (have someone take him to the

bathroom at a certain time every day!) We didn't really have to deal with this

because our son had very strong muscles and could hold it. I guess that is not

ideal, but we had other fires to fight too. He eventually got over it.

Maybe others will have better ideas, but that is my BTDT.

Ruth

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That is what I did with my daughter and it worked for us because she has a routine for everything . There were times she fought the issue , but when she realised it was a routine she was fine . Try making it a game that may help

Beckie

From: Lori Lashley <LLashley@...> Sent: Thursday, May 28, 2009 4:21:13 PMSubject: RE: ( ) Potty issues/stimmies

What’s the deal with this stuff??

My 7yr old ds won’t go unless I make him. He says he can’t feel it at all. I make him go every day after school (or same time on weekends). He gets mad and says he doesn’t have to, but he’s not allowed to get up until I check and 99% of the time, there’s a significant amount.

If I forget to make him go, he’ll stink and have stains in his underwear.

Can you try forcing him into a daily routine?

From: [mailto:AspergersSu pport@group s.com] On Behalf Of gngrbnksSent: Thursday, May 28, 2009 12:20 PM Subject: ( ) Potty issues/stimmies

My 7 yr old with AS loves to hold his poop. When he feels the need to poop, he will go off in a corner and cross his legs to keep it in. I hear him grunt and tell him to use the bathroom, and he will say he doesn't need to go, as his face is bright red with concetration. He does this everywhere, including at school. This was his first major symptom, and I've had him to doctors and counselors over the last four years. There are no medical causes, and apparently no psychological or emotional causes, other than the fact that he LIKES the feeling of poop needing to come out. Our Family Based therapists say he is "stimming" when he holds his poop.The problem is, I got the umpteenth call from the school today, that soon they will not put up with this. Kids are complaining that he smells of poop and pee and are making fun of him. He recognizes that kids don't want to play with him, but

he thinks they just don't like him, not that he smells. I've tried a million and one different methods to break him of this, and nothing is working. The school does not feel at this point that he needs special classes, because his grades are okay. His therapists do not feel he meets the criteria for an in school therapeutic support staff. And at this point, I can't homeschool my kids. So what do I do?Has anyone dealt with this type of thing successfully? --Ginger

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Maybe I'm a wuss as a mom. I tried forcing him once, and he had a major

meltdown. Those are not pretty, actually pretty scary. Therefore, I encourage

him to go, but don't force him. I've run the gamut of trying to shame him into

going, ignoring the accidents in case they were for attention, rewarding him

when he goes, and just trying to be matter of fact, and giving him as much

responsibility in cleaning himself up, etc. The matter of fact way has lessened

the stress in our home, and maybe we have a few less accidents, but not much

less.

Ginger

>

> What's the deal with this stuff??

>

>

>

> My 7yr old ds won't go unless I make him. He says he can't feel it at all.

> I make him go every day after school (or same time on weekends). He gets mad

> and says he doesn't have to, but he's not allowed to get up until I check

> and 99% of the time, there's a significant amount.

>

>

>

> If I forget to make him go, he'll stink and have stains in his underwear.

>

>

>

> Can you try forcing him into a daily routine?

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of gngrbnks

> Sent: Thursday, May 28, 2009 12:20 PM

>

> Subject: ( ) Potty issues/stimmies

>

>

>

>

>

>

>

>

> My 7 yr old with AS loves to hold his poop. When he feels the need to poop,

> he will go off in a corner and cross his legs to keep it in. I hear him

> grunt and tell him to use the bathroom, and he will say he doesn't need to

> go, as his face is bright red with concetration. He does this everywhere,

> including at school. This was his first major symptom, and I've had him to

> doctors and counselors over the last four years. There are no medical

> causes, and apparently no psychological or emotional causes, other than the

> fact that he LIKES the feeling of poop needing to come out. Our Family Based

> therapists say he is " stimming " when he holds his poop.

>

> The problem is, I got the umpteenth call from the school today, that soon

> they will not put up with this. Kids are complaining that he smells of poop

> and pee and are making fun of him. He recognizes that kids don't want to

> play with him, but he thinks they just don't like him, not that he smells.

> I've tried a million and one different methods to break him of this, and

> nothing is working. The school does not feel at this point that he needs

> special classes, because his grades are okay. His therapists do not feel he

> meets the criteria for an in school therapeutic support staff. And at this

> point, I can't homeschool my kids. So what do I do?

>

> Has anyone dealt with this type of thing successfully?--Ginger

>

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My son is the king of holding it in. He can go over a week without a BM, then of

course the next one is very painful. We began giving him Miralax 2-3 tbs every

morning and it helps. I intend to speak to his ped about it at his next visit in

a few weeks, as it has been an ongoing thing for too long. He also is struggling

with potty-training and I think it's all related. I don't think he correctly

interprets the urges either. He'll be 4 in July.

TJ

>

> My 7 yr old with AS loves to hold his poop. When he feels the need to poop,

he will go off in a corner and cross his legs to keep it in. I hear him grunt

and tell him to use the bathroom, and he will say he doesn't need to go, as his

face is bright red with concetration. He does this everywhere, including at

school. This was his first major symptom, and I've had him to doctors and

counselors over the last four years. There are no medical causes, and

apparently no psychological or emotional causes, other than the fact that he

LIKES the feeling of poop needing to come out. Our Family Based therapists say

he is " stimming " when he holds his poop.

>

> The problem is, I got the umpteenth call from the school today, that soon they

will not put up with this. Kids are complaining that he smells of poop and pee

and are making fun of him. He recognizes that kids don't want to play with him,

but he thinks they just don't like him, not that he smells. I've tried a

million and one different methods to break him of this, and nothing is working.

The school does not feel at this point that he needs special classes, because

his grades are okay. His therapists do not feel he meets the criteria for an in

school therapeutic support staff. And at this point, I can't homeschool my

kids. So what do I do?

>

> Has anyone dealt with this type of thing successfully?--Ginger

>

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I appreciate everyone's suggestions. Keep them coming. I'm taking notes and

will be talking to his therapists about trying them. About the Miralax, for

those of you who have used it, did any of you actually have more accidents using

it? My son used it for a year on a daily basis, and it seemed I was constantly

scrubbing out his underwear. Now I only use it if he tells me he hasn't pooped

in a day, or if he complains of a bad stomachache. Our current ped doesn't

quite get the situation, and the doctor who put him on miralax moved away. So

I'm kind of floundering with this.

ginger

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Ginger,

My 5 yr old has this same problem since she was 1. Her pediatrician put her on

Miralax, as she is so good at keeping it in she was getting impacted and needed

enigmas. She is on an adult dose and still only goes every 2-3 days, but at

least now she can't keep it in past that point. The doctors say it is very

gentle and with no side effects as it draws water into the intestine to make the

stools soft and mushy like mashed potatoes.

One thing helped when she is going, is I get her to count to three and tell her

to push it all out on 3, and then count to three again until she can't push any

more out. She also has to clean herself up now when she has a little accident

which is helping too.

One of the things that is difficult for her, is she can't tell the difference

between a hungry tummy, upset tummy, or an " I need to go potty " tummy. With her

it is pretty easy to tell as her tummy is a little distended when it is the

later. I hope that it will get easier as time progresses.

Best of luck!

Amie

>

> My 7 yr old with AS loves to hold his poop. When he feels the need to poop,

he will go off in a corner and cross his legs to keep it in. I hear him grunt

and tell him to use the bathroom, and he will say he doesn't need to go, as his

face is bright red with concetration. He does this everywhere, including at

school. This was his first major symptom, and I've had him to doctors and

counselors over the last four years. There are no medical causes, and

apparently no psychological or emotional causes, other than the fact that he

LIKES the feeling of poop needing to come out. Our Family Based therapists say

he is " stimming " when he holds his poop.

>

> The problem is, I got the umpteenth call from the school today, that soon they

will not put up with this. Kids are complaining that he smells of poop and pee

and are making fun of him. He recognizes that kids don't want to play with him,

but he thinks they just don't like him, not that he smells. I've tried a

million and one different methods to break him of this, and nothing is working.

The school does not feel at this point that he needs special classes, because

his grades are okay. His therapists do not feel he meets the criteria for an in

school therapeutic support staff. And at this point, I can't homeschool my

kids. So what do I do?

>

> Has anyone dealt with this type of thing successfully?--Ginger

>

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Sometimes children on the spectrum REALLY cannot assimilate the urge to toilet!

And, for others, due to long-standing issues that result in constipation, a

condition called Encopresis arises where the lining of the bowel becomes so

out-stretched that sensation is lost.

>

> What's the deal with this stuff??

>

>

>

> My 7yr old ds won't go unless I make him. He says he can't feel it at all.

> I make him go every day after school (or same time on weekends). He gets mad

> and says he doesn't have to, but he's not allowed to get up until I check

> and 99% of the time, there's a significant amount.

>

>

>

> If I forget to make him go, he'll stink and have stains in his underwear.

>

>

>

> Can you try forcing him into a daily routine?

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of gngrbnks

> Sent: Thursday, May 28, 2009 12:20 PM

>

> Subject: ( ) Potty issues/stimmies

>

>

>

>

>

>

>

>

> My 7 yr old with AS loves to hold his poop. When he feels the need to poop,

> he will go off in a corner and cross his legs to keep it in. I hear him

> grunt and tell him to use the bathroom, and he will say he doesn't need to

> go, as his face is bright red with concetration. He does this everywhere,

> including at school. This was his first major symptom, and I've had him to

> doctors and counselors over the last four years. There are no medical

> causes, and apparently no psychological or emotional causes, other than the

> fact that he LIKES the feeling of poop needing to come out. Our Family Based

> therapists say he is " stimming " when he holds his poop.

>

> The problem is, I got the umpteenth call from the school today, that soon

> they will not put up with this. Kids are complaining that he smells of poop

> and pee and are making fun of him. He recognizes that kids don't want to

> play with him, but he thinks they just don't like him, not that he smells.

> I've tried a million and one different methods to break him of this, and

> nothing is working. The school does not feel at this point that he needs

> special classes, because his grades are okay. His therapists do not feel he

> meets the criteria for an in school therapeutic support staff. And at this

> point, I can't homeschool my kids. So what do I do?

>

> Has anyone dealt with this type of thing successfully?--Ginger

>

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Um hum, forcing the issue can result poorly for some: I know a young man with

severe Autism whose team was so bent on toileting that they used an extremely

strict method and this resulted in not only holding back BM, but also urine! The

poor fellow was traumatized and had to undergo catherdization to relieve him...

> >

> > What's the deal with this stuff??

> >

> >

> >

> > My 7yr old ds won't go unless I make him. He says he can't feel it at all.

> > I make him go every day after school (or same time on weekends). He gets mad

> > and says he doesn't have to, but he's not allowed to get up until I check

> > and 99% of the time, there's a significant amount.

> >

> >

> >

> > If I forget to make him go, he'll stink and have stains in his underwear.

> >

> >

> >

> > Can you try forcing him into a daily routine?

> >

> >

> >

> > _____

> >

> > From:

> > [mailto: ] On Behalf Of gngrbnks

> > Sent: Thursday, May 28, 2009 12:20 PM

> >

> > Subject: ( ) Potty issues/stimmies

> >

> >

> >

> >

> >

> >

> >

> >

> > My 7 yr old with AS loves to hold his poop. When he feels the need to poop,

> > he will go off in a corner and cross his legs to keep it in. I hear him

> > grunt and tell him to use the bathroom, and he will say he doesn't need to

> > go, as his face is bright red with concetration. He does this everywhere,

> > including at school. This was his first major symptom, and I've had him to

> > doctors and counselors over the last four years. There are no medical

> > causes, and apparently no psychological or emotional causes, other than the

> > fact that he LIKES the feeling of poop needing to come out. Our Family Based

> > therapists say he is " stimming " when he holds his poop.

> >

> > The problem is, I got the umpteenth call from the school today, that soon

> > they will not put up with this. Kids are complaining that he smells of poop

> > and pee and are making fun of him. He recognizes that kids don't want to

> > play with him, but he thinks they just don't like him, not that he smells.

> > I've tried a million and one different methods to break him of this, and

> > nothing is working. The school does not feel at this point that he needs

> > special classes, because his grades are okay. His therapists do not feel he

> > meets the criteria for an in school therapeutic support staff. And at this

> > point, I can't homeschool my kids. So what do I do?

> >

> > Has anyone dealt with this type of thing successfully?--Ginger

> >

>

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>

> Sometimes children on the spectrum REALLY cannot assimilate the urge to

toilet! And, for others, due to long-standing issues that result in

constipation, a condition called Encopresis arises where the lining of the bowel

becomes so out-stretched that sensation is lost.

Here is our BTDT, both with our now 14yo AS son and a now 7yo niece. Our son

had both sensory issues, both squeamishness that kept him from wanting to deal

with the messiness of toileting and having a hard time telling the difference

between tummyache/hungry/need to go bathroom. On occasion, he ended up on

medication to soften the stool to prevent both encopresis and impacted bowels.

If your child is getting impacted bowels, you will know because they will start

getting stomach pains every day. It was somewhat worrisome, but he more or less

grew out of it eventually. About the middle of elementary school, he began to

be able to tell the difference between the different stomach activities. He had

to think about it. So, talking is important. He could always hold it very

well, is particular about being clean down there and having clean underwear, so

smelliness was never a problem.

Smelliness is a problem, obviously. If your child has an IEP or 504 especially,

I can't see why accommodations can't be made. Why can't arrangements be made

where mom sends in clean underwear, maybe other clothing if needed, and the

school nurse makes sure said child goes at set intervals, if possible? If the

child can't be made to go, he/she can at least be cleaned up/clean self up and

put on clean clothes. In effect, this child is not potty-trained, and the

school needs to accommodate, as far as I'm concerned. It is not unusual for

autism-spectrum kids to not be potty-trained during the elementary school years.

An alternative to the above scenario would be pull-ups.

My niece's problem is worth mentioning. Her dad died, mom took on a demanding

boyfriend, she got a very strict, inflexible kindergarten teacher, so when my

niece started holding herself, leaking out, smelling, wetting herself several

times a day at age 5 or 6 and acting out, everybody thought it was stress.

Medical reasons had been ruled out, they thought. They finally did a white

blood cell count and it was very high. She had a very bad urinary tract

infection. She was not having any fever or pain with it; she gave no indication

of being sick. It was a very bad infection, and it took them several months and

a few bouts of medication to get it all. It had gone on for quite some time.

It WAS the cause of the pants wetting. As an aside, the school had her mom keep

lots of clean clothes at school and they kept her changed and clean at school.

They often had to have her clean up and change clothes several times a day.

Ruth

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It's actually named Encopresis and it is a rotten problem to deal with.

It's been a problem with DS for 5 years now, but he is almost accident

free. Holding in a BM can cause Mega-colon=not good. Our

solution--scheduled time after meals for 10 minutes, allow him to have a

book, toy, or his DS on the potty, miralax daily in white grape PEAR

juice. Something about the pear juice is a stool softener, and he likes

it better than prune juice. Apple juice is constipating in some kids,

so we don't allow that one. He has a documented phobia of using toilets

outside of our home, so he uses the office bathroom at school, but will

only pee there! But he has made it through 1st and 2nd grades with very

few accidents, and he goes to childcare after school for a few hours 3

days/week. He is doing well, but not completely in remission. I also

have my suspicions that my DS doesn't tolerate corn in any

form--including corn syrup, and I think that causes more accidents. I'm

not a corn-syrup conspiracy theorist, but it's in too many foods and

we're over-sweetening everything in our food supply these days. So we

try to avoid that but it is hard.

Good luck with this very diffucult and disheartening problem. These

poor kids have enough to deal with without the stigma of being the

smelly kid crouching in the corner.

By the way, I don't agree that it's a stim. I think it's just avoidance

of an uncomfortable sensory issue, and some kids really don't feel it.

Some kids probably just have a hard time paying attention to physical

cues too...but a stim? I don't think I agree with that. Just my

opinion, and my son would agree.

>

> Â That is what I did with my daughter and it worked for us because

she has a routine for everything . There were times she fought the issue

, but when she realised it was a routine she was fine . Try making it a

game that may help

>

> Beckie

>

>

>

>

> ________________________________

> From: Lori Lashley LLashley@...

>

> Sent: Thursday, May 28, 2009 4:21:13 PM

> Subject: RE: ( ) Potty issues/stimmies

>

>

>

>

>

> What’s the deal with this stuff??

> Â

> My 7yr old ds won’t go unless I make him. He says he

can’t feel it at all. I make him go every day after school

(or same time on weekends). He gets mad and says he doesn’t have

to, but he’s not allowed to get up until I check and 99% of the

time, there’s a significant amount.

> Â

> If I forget to make him go, he’ll stink and have stains in his

underwear.Â

> Â

> Can you try forcing him into a daily routine?

> Â

>

> ________________________________

>

> From: [mailto:AspergersSu

pport@group s.com] On Behalf Of gngrbnks

> Sent: Thursday, May 28, 2009 12:20 PM

>

> Subject: ( ) Potty issues/stimmies

> Â

>

>

>

>

> My 7 yr old with AS loves to hold his poop. When he feels the need to

poop, he will go off in a corner and cross his legs to keep it in. I

hear him grunt and tell him to use the bathroom, and he will say he

doesn't need to go, as his face is bright red with concetration. He does

this everywhere, including at school. This was his first major symptom,

and I've had him to doctors and counselors over the last four years.

There are no medical causes, and apparently no psychological or

emotional causes, other than the fact that he LIKES the feeling of poop

needing to come out. Our Family Based therapists say he is " stimming "

when he holds his poop.

>

> The problem is, I got the umpteenth call from the school today, that

soon they will not put up with this. Kids are complaining that he smells

of poop and pee and are making fun of him. He recognizes that kids don't

want to play with him, but he thinks they just don't like him, not that

he smells. I've tried a million and one different methods to break him

of this, and nothing is working. The school does not feel at this point

that he needs special classes, because his grades are okay. His

therapists do not feel he meets the criteria for an in school

therapeutic support staff. And at this point, I can't homeschool my

kids. So what do I do?

>

> Has anyone dealt with this type of thing successfully? --Ginger

>

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Your dose of miralax might be too high, causing loose stool. I have given my son 1/2 dose for a couple of years now. He's 7 and 48 pounds. He was on 1/2 dose, 2x/day and had accidents more. Some moms have used pull-ups, panti-liners, depends, whatever the kid can tolerate. WE just bought lots of underwear as cheap as possible and often just threw them away when they were badly soiled. Carry wipes and spare undies everywhere...and hope the pants aren't soiled or smelly. We have a bad memory of an accident at disney California Adventure...at a new friend's house (that was a huge mess)...at church...at a distant relatives house...pretty much everywhere and anywhere. And he couldn't tell us if he was messy, we always had to randomly check. You might want to look for someone to refer you to a pediatric GI specialist. A KUB x-ray can be helpful (kidney, ureter, bladder). It can tell you if a lot of stool is in there and if the colon is stretched with excessive stool.>> I appreciate everyone's suggestions. Keep them coming. I'm taking notes and will be talking to his therapists about trying them. About the Miralax, for those of you who have used it, did any of you actually have more accidents using it? My son used it for a year on a daily basis, and it seemed I was constantly scrubbing out his underwear. Now I only use it if he tells me he hasn't pooped in a day, or if he complains of a bad stomachache. Our current ped doesn't quite get the situation, and the doctor who put him on miralax moved away. So I'm kind of floundering with this.> > ginger>

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> > One thing helped when she is going, is I get her to count to three and tell her to push it all out on 3, and then count to three again until she can't push any more out. She also has to clean herself up now when she has a little accident which is helping too.> > One of the things that is difficult for her, is she can't tell the difference between a hungry tummy, upset tummy, or an "I need to go potty" tummy. With her it is pretty easy to tell as her tummy is a little distended when it is the later. I hope that it will get easier as time progresses.> > Best of luck!> Amie> Same with my kid--he couldn't tell me what hurt, where it hurt, if he just had gas, or was hungry. He was 2 when it started. I read somewhere that telling the kid to "blow out the candle" works the muscles in the same way as pushing out a BM. We tried that a bit and it usually helped. Some of these kids can have poor muscle tone that makes it hard for them to push.

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Ginger,

It was a balancing act with my daughter until we got the Miralax dosage right.

Too much and she would have small accidents and have diarrhea too little and she

wouldn't go. It took over a month to get it right. We started off with ½ cap,

and worked up to a heaping cap full which is what she needs. It worried me at

first that it was a over what the adult dosage should be, but both her

pediatrician and developmental pediatrician both tell me that she should

eventually grow out of this and that dosage is perfectly safe.

She still occasionally needs to change her pants in the middle of the day due to

slight leakage, but when she is going regularly (for her once every 2-3 days)

and actually does the " 1-2-3 push " when she does have a bm, there is no leakage.

My daughter has kidney reflux from holding in her urine as well, and actually

got a severe kidney infection from me trying to force her into the potty

training. Rewards go a long way with my daughter, so she has a chart, and if she

can go a week without an accident she gets to pick an outing (zoo, park,

favorite restaurant, etc) to do the following weekend. I have her choose at the

beginning of the week so she knows what she was working towards.

Amie

>

> I appreciate everyone's suggestions. Keep them coming. I'm taking notes and

will be talking to his therapists about trying them. About the Miralax, for

those of you who have used it, did any of you actually have more accidents using

it? My son used it for a year on a daily basis, and it seemed I was constantly

scrubbing out his underwear. Now I only use it if he tells me he hasn't pooped

in a day, or if he complains of a bad stomachache. Our current ped doesn't

quite get the situation, and the doctor who put him on miralax moved away. So

I'm kind of floundering with this.

>

> ginger

>

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On Jan 25, 10:03pm, " gngrbnks " wrote:

}

} I appreciate everyone's suggestions. Keep them coming. I'm taking notes a=

} nd will be talking to his therapists about trying them. About the Miralax,=

} for those of you who have used it, did any of you actually have more accid=

} ents using it? My son used it for a year on a daily basis, and it seemed I=

} was constantly scrubbing out his underwear. Now I only use it if he tells=

} me he hasn't pooped in a day, or if he complains of a bad stomachache. Ou=

I think that might have been too high a dose. My son is currently

using Miralax and we were told to watch out for that.

Willa

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