Re: add to the hypothesis discussion

[Guest guest]

I am impressed by some of the recent posts. The scientific discourse is refreshing.

I want to thank Stefan for the great research contributed to the group.

From: miralax [mailto:miralax ] On Behalf Of Renae SchleySent: Friday, March 25, 2011 1:16 AMTo: miralax Subject: Re: add to the hypothesis discussion

This doesn’t directly address your question, but it’s something I’ve noticed about the symptoms you’ve listed (tic, personality, etc.):

I am a member of this group b/c I have a 3 yr old daughter who has constipation. She has never used Miralax, I found this group when researching it before using it, and I’m glad I didn’t give it to her. She has behavioral problems and her GI Dr. strongly believes that GI issues can have big impacts on behavior. I also personally believe that GI issues can have significant issues on brain function, which would be displayed in symptoms such as tics, behavior, etc. I am also a part of a yahoo group for parents of ADHD kids b/c I have a 10 yr old who has ADHD, tics, anxiety, sensory processing problems, among other issues. He has never been on miralax nor ADHD/anxiety drugs. Something I’ve noticed recently is that many parents on the AHDH board post about toileting issues, mainly constipation and wetting. They have children with a range of neurological symptoms both on and off of ADHD or anxiety drugs. Many of them have their kids on Miralax for constipation too. Then on this board I see kids both taking and not taking Miralax who have neurological symptoms. I can’t help but wonder if there’s a true link between GI function and neurological health and brain function. To attempt to answer your question about why miralax creates bad reactions in some children and not others – I might guess that constipated kids are kids who do or will have neurological symptoms, whether they take the miralax or not – maybe the miralax heightens the symptoms to where its more noticeable to us as parents. But b/c they are constipated they are not absorbing the necessary nutrients to help their brain and body function properly, and toxins are not passes thru the GI tract quickly enough. Maybe miralax doesn’t negatively effect the people who aren’t constipated, but have another issue or another reason for using the miralax, such as a bowel clean out for a routine procedure….Just some thoughts and things that I’ve noticed. It’s interesting.

[Guest guest]

Of course I'm an adult but have been using miralax for years without side affects.

As the person who started this board, and who gets to see the parent requests to join, I have to say that what happened to my son is repeated in many of the parent comments when they ask to join the board. Many people also join because they are curious, and have not seen the adverse reaction in their child.So I'd like to invite those who want to challenge whether or not miralax could potentially cause the same reaction/pattern in SOME children-- would you care to put forth a hypothesis as to why you think it might be happening to these children? I just spent some time on the internet and found websites where they have people post about their experiences with miralax, and even there, I find the same symptoms that again, don't affect ALL children, just SOME children.neurological symptoms, tics, psychosis, lethargy, burning/itching skin, burning bowel movements As I admit new people to this board I'll see them telling me that their child's personality is affected, that they are having facial tics/grimaces, that they are having urinary problems now, that they complain of burning bowel movements or that the bowel movements stop altogether.What led me to stop miralax in my son after enduring several months of this type of hell-- If my memory serves me correctly, it was that he had not been dosed for a day or so and had been doing better (although in that moment, I had not realized the improvement was due to time off of miralax) but it was when I re-dosed him and saw it all coming back that it made me realize that all of the hell had started when the on-call doc had given me the bottle of miralax. So again, any hypothesis about why that happened to my son, and why I keep seeing this pattern again and again in some children?

[Guest guest]

I don't mind the scientific discourse, but I also do want new members to feel

comfortable to post with their experiences or their questions, too.

W

>

> I am impressed by some of the recent posts. The scientific discourse is

> refreshing.

>

[Guest guest]

Well said!

I've felt similarly based on my son's symptoms (he was never on Miralax) and

from reading about kids in various other yahoo groups (mostly autism/spectrum

related).

It makes sense that some of these things may have been there before (maybe less

noticeable) & /or would've occurred in due course with the continued constipation

with or without Miralax - because none of our kids would've been prescribed

Miralax if they weren't constipated or withholding, or both, to begin with. The

key to helping the constipation issue is figuring out what caused the

constipation which led to prescribing laxatives like Miralax - not just finding

alternatives to Miralax.

But there's no denying that many parents here feel strongly that at least

certain of their children's symptoms either came on or were exacerbated during

the time they were on Miralax. And for those parents, figuring out what it was

about using Miralax that exacerbated existing symptoms or brought on new ones

would be so helpful.

I've experienced the gut/brain connection personally - after being GF/CF/EF/SF

and mostly grain-free (except some rice) - whenever I accidentally get gluten

(e.g., cross-contamination) or choose to 'cheat' and eat dairy - I get a variety

of 'brain' symptoms - ranging from headache/migraine, 'brain fog,' irritability,

etc.

A previous post mentioned a book titled " Gut and Psychology Syndrome " - and

though I haven't read the book, I'm familiar with the related website

(www.gapsdiet.com) and find the dietary recommendations are very helpful to many

(my family's diet has never been as strict as the GAPS, but many similarities &

we've never felt better).

Also - here's a list of several other diets that help heal the gut & help aid in

the neurological connection - http://tiny.cc/ono6c

best,

>

> This doesn't directly address your question, but it's something I've noticed

> about the symptoms you've listed (tic, personality, etc.):

>

>

>

> I am a member of this group b/c I have a 3 yr old daughter who has

> constipation. She has never used Miralax, I found this group when

> researching it before using it, and I'm glad I didn't give it to her. She

> has behavioral problems and her GI Dr. strongly believes that GI issues can

> have big impacts on behavior. I also personally believe that GI issues can

> have significant issues on brain function, which would be displayed in

> symptoms such as tics, behavior, etc. I am also a part of a yahoo group

> for parents of ADHD kids b/c I have a 10 yr old who has ADHD, tics, anxiety,

> sensory processing problems, among other issues. He has never been on

> miralax nor ADHD/anxiety drugs. Something I've noticed recently is that many

> parents on the AHDH board post about toileting issues, mainly constipation

> and wetting. They have children with a range of neurological symptoms both

> on and off of ADHD or anxiety drugs. Many of them have their kids on Miralax

> for constipation too. Then on this board I see kids both taking and not

> taking Miralax who have neurological symptoms. I can't help but wonder if

> there's a true link between GI function and neurological health and brain

> function. To attempt to answer your question about why miralax creates bad

> reactions in some children and not others - I might guess that constipated

> kids are kids who do or will have neurological symptoms, whether they take

> the miralax or not - maybe the miralax heightens the symptoms to where its

> more noticeable to us as parents. But b/c they are constipated they are not

> absorbing the necessary nutrients to help their brain and body function

> properly, and toxins are not passes thru the GI tract quickly enough. Maybe

> miralax doesn't negatively effect the people who aren't constipated, but

> have another issue or another reason for using the miralax, such as a bowel

> clean out for a routine procedure..Just some thoughts and things that I've

> noticed. It's interesting.

>

[Guest guest]

Hi all,

Great question/discussion topic!

I'm not sure why it happens and I haven't done as much research as others on this board but I could propose several guesses. I do not know the validity of any of these hypotheses but they are things I've wondered about... here they are:

1. Miralax is somehow being broken down by the body (as others have suggested). This makes sense to me, especially for severely constipated individuals who may also have bacterial overgrowth & slow transit/motility issues.

2. It's somehow leaking into the bloodstream... especially with people with gut permeability issues (Inflammatory Bowel Disease, etc.).

3. It interferes with the absorption of other key vitamins/minerals somehow having a negative effect on other body systems.

4. It pulls too much water away from the body and into the colon leading to dehydration which causes a lack of availability of water for other body processes OR increased side effects of other medications. For example, I take methotrexate (which you're supposed to drink with a full glass of water, I think m/b because of its effects on the kidneys). When I took Miralax, I felt dehydrated and like I was having increased methotrexate side effects.

5. Some people are more sensitive to chemicals or other substances in general. Adverse rxns to Miralax could be related to that general pattern... like an overactive immune response (body attacking anything that isn't "natural"/recognized... especially in high doses). This theory is related to people with allergies, as well.

Those are my thoughts... It could be one of those things or a combo or none. Whatever is happening, it seems to depend upon the individual. Everyone's body is different. I've considered all of the above in my case.

What causes the GI issues in the first place (constipation/gut permeability/etc.) is also open to debate. I think it has something to do with the balance of intestinal flora. I sometimes wonder if it's a pH thing (a theory that does not seem to get much attention in the mainstream medical community but makes some sense to me)... which could be affected by diet & other stressors. As a toddler, I'd get very bad diaper rashes, especially when I was teething. My mom said she also noticed my urine was more acidic at that time (which she thinks caused the rashes). As a young child, I was often very constipated. I even had to go to the doctor once to have stool manually removed. I also tended to be quite sensitive (physically in terms of response to medications/etc. & emotionally as well). In 2nd grade, I had a serious case of strep throat. I was a "carrier" so despite repeated doses of antibiotics, they just couldn't get rid of the infection. I almost had to have my tonsils out (but then, a massive dose of penicillin finally knocked out the strep). As a result of the large dose of antibiotics, I got really sick & developed an allergy to penicillin/amoxycillin (hives, etc.). As a teenager, I didn't really have many problems except for constipation & rather acidic urine. By the time I was in my early 20's, I was diagnosed with Crohn's disease & had been on & off medication for anxiety. In trying different medications for the Crohn's, it was determined I was also allergic to azathioprine so my doctor started me on methotrexate instead (an immunosuppressant). I also changed my diet & lifestyle and was healthy for quite a while (only had flares every once in a while) until a few months ago when I had a serious flare. It was after months of extreme stress & anxiety, along with inadequate diet/exercise/etc. I felt like my intestines had a nervous breakdown. I'm slowly regaining my health (through traditional/Western care as well as diet/supplements/probiotics, exercise, relaxation techniques, accupuncture, meditation, etc.). I am not out of the woods yet, though, & can't seem to tolerate any level of stress without having abdominal pain. I'm using Natural Calm & diet (vegan & gluten/soy/peanut/sugar free) to treat the constipation rather than the Miralax because it was making me progressively sicker. As a side note, my brother also developed a penicillin/amoxycillin allergy and he has Crohn's as well.

Thanks again for posing this question... I'm always interested in reading the discussions and I've learned so much from others in this group. I appreciate such an open, supportive forum where we can share and explore our varied thoughts and experiences together. I'm interested in reading others' ideas!

add to the hypothesis discussion

As the person who started this board, and who gets to see the parent requests to join, I have to say that what happened to my son is repeated in many of the parent comments when they ask to join the board. Many people also join because they are curious, and have not seen the adverse reaction in their child.

So I'd like to invite those who want to challenge whether or not miralax could potentially cause the same reaction/pattern in SOME children-- would you care to put forth a hypothesis as to why you think it might be happening to these children?

I just spent some time on the internet and found websites where they have people post about their experiences with miralax, and even there, I find the same symptoms that again, don't affect ALL children, just SOME children.

neurological symptoms, tics, psychosis, lethargy, burning/itching skin, burning bowel movements

As I admit new people to this board I'll see them telling me that their child's personality is affected, that they are having facial tics/grimaces, that they are having urinary problems now, that they complain of burning bowel movements or that the bowel movements stop altogether.

What led me to stop miralax in my son after enduring several months of this type of hell-- If my memory serves me correctly, it was that he had not been dosed for a day or so and had been doing better (although in that moment, I had not realized the improvement was due to time off of miralax) but it was when I re-dosed him and saw it all coming back that it made me realize that all of the hell had started when the on-call doc had given me the bottle of miralax.

So again, any hypothesis about why that happened to my son, and why I keep seeing this pattern again and again in some children?

[Guest guest]

Wow - thanks for sharing your story - your childhood symptoms seem so similar to

what many kids are experiencing here, on or off Miralax. Since you were not on

Miralax as a child - but as an adult found it was making you sicker, that is

also interesting & does add to the question of whether Miralax is exacerbating

symptoms that were present in conjunction with the development of the

constipation in the first place.

I really wanted to highlight one part of your post in case it was missed by

anyone interested in knowing what's working for you as an adult:

<<<start quote from your message below>>>

" I'm slowly regaining my health (through traditional/Western care as well as

diet/supplements/probiotics, exercise, relaxation techniques, accupuncture,

meditation, etc.). I am not out of the woods yet, though, & can't seem to

tolerate any level of stress without having abdominal pain. I'm using Natural

Calm & diet (vegan & gluten/soy/peanut/sugar free) to treat the constipation

rather than the Miralax because it was making me progressively sicker. "

<<<end quote from your message below>>>

Your diet is similar to ours - gluten-free, soy-free peanut-free and we're not

vegans, but don't do eggs or milk/casein - which falls into the vegan aspect of

your diet. Also, we aren't entirely sugar-free in my house, but we do not use

any white sugar and extremely limit our intake of cane sugar-sweetened foods -

trying to use honey, dates, stevia, and other forms of sweetener if needed.

thanks, again, for sharing your story - it is helpful in so many ways! I hope

you continue to regain your health & feel well!

best,

>

>

> Hi all,

>

> Great question/discussion topic!

>

> I'm not sure why it happens and I haven't done as much research as others on

this board but I could propose several guesses. I do not know the validity of

any of these hypotheses but they are things I've wondered about... here they

are:

>

> 1. Miralax is somehow being broken down by the body (as others have

suggested). This makes sense to me, especially for severely constipated

individuals who may also have bacterial overgrowth & slow transit/motility

issues.

> 2. It's somehow leaking into the bloodstream... especially with people with

gut permeability issues (Inflammatory Bowel Disease, etc.).

> 3. It interferes with the absorption of other key vitamins/minerals somehow

having a negative effect on other body systems.

> 4. It pulls too much water away from the body and into the colon leading to

dehydration which causes a lack of availability of water for other body

processes OR increased side effects of other medications. For example, I take

methotrexate (which you're supposed to drink with a full glass of water, I think

m/b because of its effects on the kidneys). When I took Miralax, I felt

dehydrated and like I was having increased methotrexate side effects.

> 5. Some people are more sensitive to chemicals or other substances in

general. Adverse rxns to Miralax could be related to that general pattern...

like an overactive immune response (body attacking anything that isn't

" natural " /recognized... especially in high doses). This theory is related to

people with allergies, as well.

>

> Those are my thoughts... It could be one of those things or a combo or none.

Whatever is happening, it seems to depend upon the individual. Everyone's body

is different. I've considered all of the above in my case.

>

> What causes the GI issues in the first place (constipation/gut

permeability/etc.) is also open to debate. I think it has something to do with

the balance of intestinal flora. I sometimes wonder if it's a pH thing (a

theory that does not seem to get much attention in the mainstream medical

community but makes some sense to me)... which could be affected by diet & other

stressors. As a toddler, I'd get very bad diaper rashes, especially when I was

teething. My mom said she also noticed my urine was more acidic at that time

(which she thinks caused the rashes). As a young child, I was often very

constipated. I even had to go to the doctor once to have stool manually

removed. I also tended to be quite sensitive (physically in terms of response

to medications/etc. & emotionally as well). In 2nd grade, I had a serious case

of strep throat. I was a " carrier " so despite repeated doses of antibiotics,

they just couldn't get rid of the infection. I almost had to have my tonsils

out (but then, a massive dose of penicillin finally knocked out the strep). As

a result of the large dose of antibiotics, I got really sick & developed an

allergy to penicillin/amoxycillin (hives, etc.). As a teenager, I didn't really

have many problems except for constipation & rather acidic urine. By the time I

was in my early 20's, I was diagnosed with Crohn's disease & had been on & off

medication for anxiety. In trying different medications for the Crohn's, it was

determined I was also allergic to azathioprine so my doctor started me on

methotrexate instead (an immunosuppressant). I also changed my diet & lifestyle

and was healthy for quite a while (only had flares every once in a while) until

a few months ago when I had a serious flare. It was after months of extreme

stress & anxiety, along with inadequate diet/exercise/etc. I felt like my

intestines had a nervous breakdown. I'm slowly regaining my health (through

traditional/Western care as well as diet/supplements/probiotics, exercise,

relaxation techniques, accupuncture, meditation, etc.). I am not out of the

woods yet, though, & can't seem to tolerate any level of stress without having

abdominal pain. I'm using Natural Calm & diet (vegan & gluten/soy/peanut/sugar

free) to treat the constipation rather than the Miralax because it was making me

progressively sicker. As a side note, my brother also developed a

penicillin/amoxycillin allergy and he has Crohn's as well.

>

> Thanks again for posing this question... I'm always interested in reading the

discussions and I've learned so much from others in this group. I appreciate

such an open, supportive forum where we can share and explore our varied

thoughts and experiences together. I'm interested in reading others' ideas!

>

>

>

>

> add to the hypothesis discussion

>

>

>

>

> As the person who started this board, and who gets to see the parent requests

to join, I have to say that what happened to my son is repeated in many of the

parent comments when they ask to join the board. Many people also join because

they are curious, and have not seen the adverse reaction in their child.

>

> So I'd like to invite those who want to challenge whether or not miralax could

potentially cause the same reaction/pattern in SOME children-- would you care to

put forth a hypothesis as to why you think it might be happening to these

children?

>

> I just spent some time on the internet and found websites where they have

people post about their experiences with miralax, and even there, I find the

same symptoms that again, don't affect ALL children, just SOME children.

>

> neurological symptoms, tics, psychosis, lethargy, burning/itching skin,

burning bowel movements

>

> As I admit new people to this board I'll see them telling me that their

child's personality is affected, that they are having facial tics/grimaces, that

they are having urinary problems now, that they complain of burning bowel

movements or that the bowel movements stop altogether.

>

> What led me to stop miralax in my son after enduring several months of this

type of hell-- If my memory serves me correctly, it was that he had not been

dosed for a day or so and had been doing better (although in that moment, I had

not realized the improvement was due to time off of miralax) but it was when I

re-dosed him and saw it all coming back that it made me realize that all of the

hell had started when the on-call doc had given me the bottle of miralax.

>

> So again, any hypothesis about why that happened to my son, and why I keep

seeing this pattern again and again in some children?

>