Re: why we have gone back to Miralax--temporarily

[Guest guest]

Bonnie,

Thanks for sharing your thoughts. We try to stay away from meds when possible too, but sometimes things take a turn and an antibiotic has been helpful. It does seem that things got out of whack when peg went over the counter, even doctors thinking it was safer than it may be.

I would love to see the medical profession explore more pre-colonoscopy options, like colon hydrotherapy, which is done at Danbury Hospital and develop more effective and safer magnesium options. The reliance on peg reminds me of our reliance on oil - we haven't put enough into researching and developing safer options (and non-pharmaceutical options) that work in all cases, especially severe cases - and now that we need them, they're not readily available.

What I love about this group is that it's a forum for everyone to share and learn from each other. Some people are using peg, some have stopped, and some are in between - we're all sorting through it all and making the best choices for our own families.

Carol

I haven't posted in several years, though we've been continuing our struggle. Finally, we turned back to Miralax as a temporary measure, because when we tried to do a cleanout for a colonoscopy, it turned out that our eight-year-old had impacted stool the size of a football stuck in her colon. It had to be manually removed and she was never able to have the colonoscopy. So we are using Miralax (along with Ex-Lax) now for a few months to ensure that her colon has time to drop back down to its normal size. I'm not happy with giving her Miralax, but: 1. It's the lesser of evils right now. 2. I finally figured out that with Miralax, it is definitely safer to take a higher dose than a lower dose, because (I think) less is absorbed if the colon is staying clear and things are moving along. I DO think that it is dangerous and very much so if you take it in small amounts without getting impactions to ever fully clear. Because then you've got it just sitting there in the colon, getting absorbed a little at a time, possibly through a leaky gut. I don't think this stuff should even be available over the counter -- and when she took it without being cleaned out, in other words when she took it behind an impaction, we did see some worrisome side effects. But not so now that she's cleaned out. In fact -- 3. Since the cleanout, her energy levels are much higher and she's in a good mood most of the time--compared to almost constant crankiness and irritability before.4. I took some time to check out recent studies of Miralax and children on Scirus (a search engine for scientific journals), and discovered that there have been a lot more studies since I initially took her off Miralax back in 2004--at that time, it hadn't really been studied in children. Also, I found that polyethylene glycol in some form is being used by neurologists as a cutting edge treatment for improving the speed of neuronal repair in cases of spinal cord and brain injuries--not sure what to make of that, but it's rather fascinating and I wonder if it will turn out to be potentially useful for repair of damaged neurons in the digestive track. But that's only my speculation.5. Nobody EVER wants to take a drug or have their child take one. But at times it ends up being necessary despite the side effects. I'm never one to take a drug or give one to my kids if I can possibly avoid it. But, I went through a divorce and remarriage, and married someone who has a medical condition that depends on him taking a prescription regularly that in some people would have strong side effects, but for him is absolutely necessary to survival. And it has changed my outlook on drugs to some degree. I don't know where we will go from here or if my daughter's condition will improve enough to get her off Miralax. But I will say this one last thing--I don't think doctors have the ability to cure her. But I think that if this Western approach can keep her colon clear long enough for my natural/nonWestern methods to have a chance to work, then that is what may in the end cure her. And do you know what I think will ultimately cure her? Energy work such as reiki, BodyTalk, and using essential oils. Because I think that her condition was caused by stress or by picking up the stress of people around her (living with parents who were heading for a divorce for her whole life). Consequently, I believe that taking the approach of relaxing her nervous system CAN work -- but only now that her colon is clear, because before, I don't see how the subtle relaxation effects of reiki and aromatherapy could have competed with that large impaction. I think we needed Western medicine to interve ne before nonWestern medicine could cure. Though I don't know yet if that is what will happen.I would be interested to hear your thoughts on this. For those who are wondering, yes, we tried milk of magnesia (couldn't get it into her consistently), yes, we tried all sorts of other magnesium-based options, yes, we tried homeopathy, yes, we tried going gluten-free and dairy-free, yes, we tried playing with fiber intake, yes, we tried chiropractic care (which was helpful), yes we tried probiotics and enzymes (still take those), yes, yes, to all of that. And I still recommend those other options to anyone I know who is going through this because they can help. But sometimes you just have to break the cycle first before all those gentle subtle ways of intervening can have a chance to work.Bonnie

[Guest guest]

I agree, lesser of the two evils, for now.

I have found aloe vera juice helpful for me but my son can't take it because he's allergic to it. Since I took him off miralax a month ago, he is only on senna. I expect it to be a matter of time before we have a problem again.

(My son had a a seizure while on mega doses of miralax and I wondered if there were a connection).

Subject: why we have gone back to Miralax--temporarilyTo: miralax Date: Monday, March 26, 2012, 8:42 AM

I haven't posted in several years, though we've been continuing our struggle. Finally, we turned back to Miralax as a temporary measure, because when we tried to do a cleanout for a colonoscopy, it turned out that our eight-year-old had impacted stool the size of a football stuck in her colon. It had to be manually removed and she was never able to have the colonoscopy. So we are using Miralax (along with Ex-Lax) now for a few months to ensure that her colon has time to drop back down to its normal size. I'm not happy with giving her Miralax, but: 1. It's the lesser of evils right now. 2. I finally figured out that with Miralax, it is definitely safer to take a higher dose than a lower dose, because (I think) less is absorbed if the colon is staying clear and things are moving along. I DO think that it is dangerous and very much so if you take it in small amounts without getting impactions to ever fully clear. Because then

you've got it just sitting there in the colon, getting absorbed a little at a time, possibly through a leaky gut. I don't think this stuff should even be available over the counter -- and when she took it without being cleaned out, in other words when she took it behind an impaction, we did see some worrisome side effects. But not so now that she's cleaned out. In fact -- 3. Since the cleanout, her energy levels are much higher and she's in a good mood most of the time--compared to almost constant crankiness and irritability before.4. I took some time to check out recent studies of Miralax and children on Scirus (a search engine for scientific journals), and discovered that there have been a lot more studies since I initially took her off Miralax back in 2004--at that time, it hadn't really been studied in children. Also, I found that polyethylene glycol in some form is being used by neurologists as a cutting edge treatment for improving

the speed of neuronal repair in cases of spinal cord and brain injuries--not sure what to make of that, but it's rather fascinating and I wonder if it will turn out to be potentially useful for repair of damaged neurons in the digestive track. But that's only my speculation.5. Nobody EVER wants to take a drug or have their child take one. But at times it ends up being necessary despite the side effects. I'm never one to take a drug or give one to my kids if I can possibly avoid it. But, I went through a divorce and remarriage, and married someone who has a medical condition that depends on him taking a prescription regularly that in some people would have strong side effects, but for him is absolutely necessary to survival. And it has changed my outlook on drugs to some degree. I don't know where we will go from here or if my daughter's condition will improve enough to get her off Miralax. But I will say this one last thing--I don't

think doctors have the ability to cure her. But I think that if this Western approach can keep her colon clear long enough for my natural/nonWestern methods to have a chance to work, then that is what may in the end cure her. And do you know what I think will ultimately cure her? Energy work such as reiki, BodyTalk, and using essential oils. Because I think that her condition was caused by stress or by picking up the stress of people around her (living with parents who were heading for a divorce for her whole life). Consequently, I believe that taking the approach of relaxing her nervous system CAN work -- but only now that her colon is clear, because before, I don't see how the subtle relaxation effects of reiki and aromatherapy could have competed with that large impaction. I think we needed Western medicine to intervene before nonWestern medicine could cure. Though I don't know yet if that is what will happen.I would be interested to hear

your thoughts on this. For those who are wondering, yes, we tried milk of magnesia (couldn't get it into her consistently), yes, we tried all sorts of other magnesium-based options, yes, we tried homeopathy, yes, we tried going gluten-free and dairy-free, yes, we tried playing with fiber intake, yes, we tried chiropractic care (which was helpful), yes we tried probiotics and enzymes (still take those), yes, yes, to all of that. And I still recommend those other options to anyone I know who is going through this because they can help. But sometimes you just have to break the cycle first before all those gentle subtle ways of intervening can have a chance to work.Bonnie

[Guest guest]

My son is using Fletcher's (a form of senna) along with extra fiber in his diet

(gummy fiber & benefiber in his water). He is an extremely picky

eater. He is pooping 'normally' for the first time in his young life (he

is 9 1/2 years old). I am optimistically hopeful for him, and very

proud, and very happy. My son has autism....was on miralax for

YEARS. --Ann L Brown12138 Roy Jech Farm

RoadGentry, AR 72734 Quoting R B

: I agree, lesser of the two evils, for now.I have

found aloe vera juice helpful for me but my son can't take it because he's

allergic to it. Since I took him off miralax a month ago, he is only on senna. I

expect it to be a matter of time before we have a problem again.(My

son had a a seizure while on mega doses of miralax and I wondered if there were

a connection).From: Bonnie

Subject: why we

have gone back to Miralax--temporarilyTo: miralax Date: Monday, March 26, 2012, 8:42 AM I haven't posted in several years, though we've

been continuing our struggle. Finally, we turned back to Miralax as a temporary

measure, because when we tried to do a cleanout for a colonoscopy, it turned out

that our eight-year-old had impacted stool the size of a football stuck in her

colon. It had to be manually removed and she was never able to have the

colonoscopy. So we are using Miralax (along with Ex-Lax) now for a few months to

ensure that her colon has time to drop back down to its normal size. I'm not happy with giving her Miralax, but: 1. It's the lesser of

evils right now. 2. I finally figured out that with Miralax, it is

definitely safer to take a higher dose than a lower dose, because (I think) less

is absorbed if the colon is staying clear and things are moving along. I DO

think that it is dangerous and very much so if you take it in small amounts

without getting impactions to ever fully clear. Because then you've got it just

sitting there in the colon, getting absorbed a little at a time, possibly

through a leaky gut. I don't think this stuff should even be available over the

counter -- and when she took it without being cleaned out, in other words when

she took it behind an impaction, we did see some worrisome side effects. But not

so now that she's cleaned out. In fact -- 3. Since the cleanout, her

energy levels are much higher and she's in a good mood most of the

time--compared to almost constant crankiness and irritability before.4. I took some time to check out recent studies of Miralax and children on

Scirus (a search engine for scientific journals), and discovered that there have

been a lot more studies since I initially took her off Miralax back in 2004--at

that time, it hadn't really been studied in children. Also, I found that

polyethylene glycol in some form is being used by neurologists as a cutting edge

treatment for improving the speed of neuronal repair in cases of spinal cord and

brain injuries--not sure what to make of that, but it's rather fascinating and I

wonder if it will turn out to be potentially useful for repair of damaged

neurons in the digestive track. But that's only my speculation.5. Nobody EVER wants to take a drug or have their child take one. But at times it

ends up being necessary despite the side effects. I'm never one to take a drug

or give one to my kids if I can possibly avoid it. But, I went through a divorce

and remarriage, and married someone who has a medical condition that depends on

him taking a prescription regularly that in some people would have strong side

effects, but for him is absolutely necessary to survival. And it has changed my

outlook on drugs to some degree. I don't know where we will go from

here or if my daughter's condition will improve enough to get her off Miralax. But I will say this one last thing--I don't think doctors have the ability to

cure her. But I think that if this Western approach can keep her colon clear

long enough for my natural/nonWestern methods to have a chance to work, then

that is what may in the end cure her. And do you know what I think will

ultimately cure her? Energy work such as reiki, BodyTalk, and using essential

oils. Because I think that her condition was caused by stress or by picking up

the stress of people around her (living with parents who were heading for a

divorce for her whole life). Consequently, I believe that taking the approach of

relaxing her nervous system CAN work -- but only now that her colon is clear,

because before, I don't see how the subtle relaxation effects of reiki and

aromatherapy could have competed with that large impaction. I think we needed

Western medicine to intervene before nonWestern medicine could cure. Though I

don't know yet if that is what will happen.I would be interested to

hear your thoughts on this. For those who are wondering, yes, we tried milk of

magnesia (couldn't get it into her consistently), yes, we tried all sorts of

other magnesium-based options, yes, we tried homeopathy, yes, we tried going

gluten-free and dairy-free, yes, we tried playing with fiber intake, yes, we

tried chiropractic care (which was helpful), yes we tried probiotics and enzymes

(still take those), yes, yes, to all of that. And I still recommend those other

options to anyone I know who is going through this because they can help. But

sometimes you just have to break the cycle first before all those gentle subtle

ways of intervening can have a chance to work.Bonnie

[Guest guest]

Ann,

I too have an ASD child who is picky eater and has constipation issues, ongoing

since he was a toddler. I am curious did you ever see a GI specialist, like Dr.

Krigsman in NY, who specializes in children with Autism and GI disorders.o

Did you ever do an endoscopy/colonoscopy?

Thanks,

> From: Bonnie

> Subject: why we have gone back to Miralax--temporarily

> To: miralax

> Date: Monday, March 26, 2012, 8:42 AM

>

> I haven't posted in several years, though we've been continuing our

> struggle. Finally, we turned back to Miralax as a temporary measure,

> because when we tried to do a cleanout for a colonoscopy, it turned out

> that our eight-year-old had impacted stool the size of a football stuck

> in her colon. It had to be manually removed and she was never able to

> have the colonoscopy. So we are using Miralax (along with Ex-Lax) now

> for a few months to ensure that her colon has time to drop back down to

> its normal size.

>

> I'm not happy with giving her Miralax, but:

>

> 1. It's the lesser of evils right now.

>

> 2. I finally figured out that with Miralax, it is definitely safer to

> take a higher dose than a lower dose, because (I think) less is

> absorbed if the colon is staying clear and things are moving along. I

> DO think that it is dangerous and very much so if you take it in small

> amounts without getting impactions to ever fully clear. Because then

> you've got it just sitting there in the colon, getting absorbed a

> little at a time, possibly through a leaky gut. I don't think this

> stuff should even be available over the counter -- and when she took it

> without being cleaned out, in other words when she took it behind an

> impaction, we did see some worrisome side effects. But not so now that

> she's cleaned out. In fact --

>

> 3. Since the cleanout, her energy levels are much higher and she's in a

> good mood most of the time--compared to almost constant crankiness and

> irritability before.

>

> 4. I took some time to check out recent studies of Miralax and children

> on Scirus (a search engine for scientific journals), and discovered

> that there have been a lot more studies since I initially took her off

> Miralax back in 2004--at that time, it hadn't really been studied in

> children. Also, I found that polyethylene glycol in some form is being

> used by neurologists as a cutting edge treatment for improving the

> speed of neuronal repair in cases of spinal cord and brain

> injuries--not sure what to make of that, but it's rather fascinating

> and I wonder if it will turn out to be potentially useful for repair of

> damaged neurons in the digestive track. But that's only my speculation.

>

> 5. Nobody EVER wants to take a drug or have their child take one. But

> at times it ends up being necessary despite the side effects. I'm never

> one to take a drug or give one to my kids if I can possibly avoid it.

> But, I went through a divorce and remarriage, and married someone who

> has a medical condition that depends on him taking a prescription

> regularly that in some people would have strong side effects, but for

> him is absolutely necessary to survival. And it has changed my outlook

> on drugs to some degree.

>

> I don't know where we will go from here or if my daughter's condition

> will improve enough to get her off Miralax. But I will say this one

> last thing--I don't think doctors have the ability to cure her. But I

> think that if this Western approach can keep her colon clear long

> enough for my natural/nonWestern methods to have a chance to work, then

> that is what may in the end cure her. And do you know what I think will

> ultimately cure her? Energy work such as reiki, BodyTalk, and using

> essential oils. Because I think that her condition was caused by stress

> or by picking up the stress of people around her (living with parents

> who were heading for a divorce for her whole life). Consequently, I

> believe that taking the approach of relaxing her nervous system CAN

> work -- but only now that her colon is clear, because before, I don't

> see how the subtle relaxation effects of reiki and aromatherapy could

> have competed with that large impaction. I think we needed Western

> medicine to intervene before nonWestern medicine could cure. Though I

> don't know yet if that is what will happen.

>

> I would be interested to hear your thoughts on this. For those who are

> wondering, yes, we tried milk of magnesia (couldn't get it into her

> consistently), yes, we tried all sorts of other magnesium-based

> options, yes, we tried homeopathy, yes, we tried going gluten-free and

> dairy-free, yes, we tried playing with fiber intake, yes, we tried

> chiropractic care (which was helpful), yes we tried probiotics and

> enzymes (still take those), yes, yes, to all of that. And I still

> recommend those other options to anyone I know who is going through

> this because they can help. But sometimes you just have to break the

> cycle first before all those gentle subtle ways of intervening can have

> a chance to work.

>

> Bonnie

>