Re: Our son's Nutriiveda experience and two questions...

[Guest guest]

I don't know the answer on this one about why providing healthy food

will create any issues with potty training in your son. In most cases as you

can read in the testimonials NV has helped with potty training and right away

-we even list it as one of the ways it helps here

http://pursuitofresearch.com/pursuit-of-research/

As far as your question will your child always need to be on it -you kind of

already answered it. To me it's clear the answer is no -I mean if you stop NV

right away you notice more regressions than you do if they are on it for awhile.

Thing is just like fish oils providing essential fatty acids -you have to make

sure that in the daily diet your child does receive ALL of the essential amino

acids and nutrients that NV provides every day. They may just need them from

the NV now because they are easily digestible but I suspect if this does help

the metabolic system as world renowned doctors developed it for

http://pursuitofresearch.com/endorsed-by-the-chopra-center/ that your child may

be able to utilize proteins and other nutrients from foods that are more

difficult to digest.

I have seen positive results on just about everyone in my family -including my

mother and of course my Aunt Leona -and we have the page how this is helping

seniors as well

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-diseases-of-the-elderly/ so I choose to take fish oils and NV every day

myself for me. While I can't say I crave fish oils I do feel better when I take

them -but I do crave NV and for those of you friends with me on Facebook to

validate what I'm saying I never looked or felt better. As many here know I

have a history of celiac disease as a child -spent years in the hospital as a

baby and young child and almost died -and to me there is nothing more important

than food that can help the body help itself. I suspect Tanner and most of the

kids can go down to a maintenance dosage of a scoop or two a day -having a

protein shake a day is healthy anyway. I've done that for years...but for me

I'm on 4 scoops a day and I don't use it as meal replacement- I use it with

meals- and I pray it keeps me from having any celiac issues flare up as I age-

which is the plan for the celiac that happens in most that I plan to try to

stop!!!

So while your fear is that your child has to eat something healthy the rest of

his life...mine is that they don't stop making it and just hope I can take it

the rest of my life because I know how it's helping me and others in real

concrete ways you will notice. I mean I take fish oils each day because I know

they are healthy but honestly don't really notice when I take them much -but

notice if I don't the difference. NV I and other adults I know that take it

-yes you know you took it- but all it is again is good nutrition. You may want

to read this I just wrote

http://pursuitofresearch.com/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

Oh and yes -once you stop NV and start again for some reason it does take weeks

and not days for it to " work " again...don't know why on that either. Fish oils

work slower to start but once you stop them they work right away- and NV works

to start way faster but with that lag for it to work again once you stop.

But again the trouble with potty training...I can only speculate so will see if

anyone else here has any thoughts -and I'll ask around. I do know most in this

group don't potty train anywhere prior to close to 4 years old and he's how old

now? 4 years old right? We do have a ton of archives on potty training

suggestions. I know in general if they have no interest you keep them in

diapers until they do- I mean there are tricks and all but if there is zero

interest....Do you want me to post some of the archives for you? Let me know!

Warm regards,

=====

[Guest guest]

HI

  start potty training with him like try every half an hour going in

the

bathroom and sitting and make him try .give him a gestures def it will take a

one week or more to know the concept but belive it works  but the thing is we

should keep trying for evey half an hour even though he may refuse to go at

intial point but basically they  will know the concept of going potty only in

toilet.

>

> I don't know the answer on this one about why providing healthy food

will create any issues with potty training in your son. In most cases as you

can read in the testimonials NV has helped with potty training and right away

-we even list it as one of the ways it helps here

http://pursuitofresearch.com/pursuit-of-research/

>

> As far as your question will your child always need to be on it -you kind of

already answered it. To me it's clear the answer is no -I mean if you stop NV

right away you notice more regressions than you do if they are on it for awhile.

Thing is just like fish oils providing essential fatty acids -you have to make

sure that in the daily diet your child does receive ALL of the essential amino

acids and nutrients that NV provides every day. They may just need them from

the NV now because they are easily digestible but I suspect if this does help

the metabolic system as world renowned doctors developed it for

http://pursuitofresearch.com/endorsed-by-the-chopra-center/ that your child may

be able to utilize proteins and other nutrients from foods that are more

difficult to digest.

>

> I have seen positive results on just about everyone in my family -including my

mother and of course my Aunt Leona -and we have the page how this is helping

seniors as well

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-diseases-of-the-elderly/ so I choose to take fish oils and NV every day

myself for me. While I can't say I crave fish oils I do feel better when I take

them -but I do crave NV and for those of you friends with me on Facebook to

validate what I'm saying I never looked or felt better. As many here know I

have a history of celiac disease as a child -spent years in the hospital as a

baby and young child and almost died -and to me there is nothing more important

than food that can help the body help itself. I suspect Tanner and most of the

kids can go down to a maintenance dosage of a scoop or two a day -having a

protein shake a day is healthy anyway. I've done that for years...but for me

I'm on 4 scoops a day and I don't use it as meal replacement- I use it with

meals- and I pray it keeps me from having any celiac issues flare up as I age-

which is the plan for the celiac that happens in most that I plan to try to

stop!!!

>

> So while your fear is that your child has to eat something healthy the rest of

his life...mine is that they don't stop making it and just hope I can take it

the rest of my life because I know how it's helping me and others in real

concrete ways you will notice. I mean I take fish oils each day because I know

they are healthy but honestly don't really notice when I take them much -but

notice if I don't the difference. NV I and other adults I know that take it

-yes you know you took it- but all it is again is good nutrition. You may want

to read this I just wrote

>

http://pursuitofresearch.com/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

>

> Oh and yes -once you stop NV and start again for some reason it does take

weeks and not days for it to " work " again...don't know why on that either. Fish

oils work slower to start but once you stop them they work right away- and NV

works to start way faster but with that lag for it to work again once you stop.

>

> But again the trouble with potty training...I can only speculate so will see

if anyone else here has any thoughts -and I'll ask around. I do know most in

this group don't potty train anywhere prior to close to 4 years old and he's how

old now? 4 years old right? We do have a ton of archives on potty training

suggestions. I know in general if they have no interest you keep them in

diapers until they do- I mean there are tricks and all but if there is zero

interest....Do you want me to post some of the archives for you? Let me know!

>

> Warm regards,

>

>

>

> =====

>

[Guest guest]

Hi ,

We started our son on NV around the same time as you did and he had just turned

4 at the time. Your son sounds a lot like my son as far as his experiences with

NV and potty training. We did stop NV two times for different reasons and saw

the same regressions.

At 4, I had tried potty training twice and Nichael absolutely hated it. I was

very frustrated with it and started reading lots of books on potty training. I

read " potty training in one day " and followed the book's method.

In this book you throw a " potty party " and you first teach a doll to go potty

and later on the day it's the child's turn. It's a really cute method and I'm

sure it works for a child with no issues, but I knew it wouldn't be a one day

thing for us. The only reason I choose to go with it, was because Nichael hated

the potty chair. He was scared of it and he wouldn't touch it or even go inside

the bathroom. I think this is part my fault because I had insisted on it so much

before.

So I thought that if maybe I did a party (he loves bday parties) he would at

least loose his fear and get somewhat excited...and that's exactly what

happened.

Now, he still is not potty trained. At home he goes pee 90% of the time in the

potty and poop only about 30%. At home he just wears underwear. When we are out

is still a bit of a nightmare...he goes pee on public places but not poop.

Although we got him to use the potty, he's still pretty scared of the toilet. He

still does not use communication to tell us that he needs to go and sometimes I

feel like he's not aware that it's not ok to have an accident, like your son.

At home he goes by himself or when I see it's been a while since he went, I

remind him it's time. I have four potty chairs around the house and I make sure

there's one always by him.

When we are out of the house though, he will not tell us. He wears pull ups when

we go out and at school because we just got " tired " of dealing with the

accidents (a 4 year old accident it's not just a little wet, it's a puddle on

the floor).

We just decided now to give him a break and wait a little longer until he seams

a bit more used to it and until he is 100% comfortable with his potty at

home...then I will try to push more the toilet to see if he looses his fear so

he's able to go on public places. I do take the his potty with me in the car and

I try to make him use it before we go somewhere, but it does not prevent the

accidents.

I know it's frustrating...he's going to be 5 in March, but I hope he'll get

there.

I would also love to hear other people's experiences with this though...I'm just

kinda of going with it and I don't know if I'm completely doing to right thing

or if there's better ideas on what I could do.

As far as NV, I just hope it's always around and always available. :-)

Thanks for posting.

.

>

> I don't know the answer on this one about why providing healthy food

will create any issues with potty training in your son. In most cases as you

can read in the testimonials NV has helped with potty training and right away

-we even list it as one of the ways it helps here

http://pursuitofresearch.com/pursuit-of-research/

>

> As far as your question will your child always need to be on it -you kind of

already answered it. To me it's clear the answer is no -I mean if you stop NV

right away you notice more regressions than you do if they are on it for awhile.

Thing is just like fish oils providing essential fatty acids -you have to make

sure that in the daily diet your child does receive ALL of the essential amino

acids and nutrients that NV provides every day. They may just need them from

the NV now because they are easily digestible but I suspect if this does help

the metabolic system as world renowned doctors developed it for

http://pursuitofresearch.com/endorsed-by-the-chopra-center/ that your child may

be able to utilize proteins and other nutrients from foods that are more

difficult to digest.

>

> I have seen positive results on just about everyone in my family -including my

mother and of course my Aunt Leona -and we have the page how this is helping

seniors as well

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-diseases-of-the-elderly/ so I choose to take fish oils and NV every day

myself for me. While I can't say I crave fish oils I do feel better when I take

them -but I do crave NV and for those of you friends with me on Facebook to

validate what I'm saying I never looked or felt better. As many here know I

have a history of celiac disease as a child -spent years in the hospital as a

baby and young child and almost died -and to me there is nothing more important

than food that can help the body help itself. I suspect Tanner and most of the

kids can go down to a maintenance dosage of a scoop or two a day -having a

protein shake a day is healthy anyway. I've done that for years...but for me

I'm on 4 scoops a day and I don't use it as meal replacement- I use it with

meals- and I pray it keeps me from having any celiac issues flare up as I age-

which is the plan for the celiac that happens in most that I plan to try to

stop!!!

>

> So while your fear is that your child has to eat something healthy the rest of

his life...mine is that they don't stop making it and just hope I can take it

the rest of my life because I know how it's helping me and others in real

concrete ways you will notice. I mean I take fish oils each day because I know

they are healthy but honestly don't really notice when I take them much -but

notice if I don't the difference. NV I and other adults I know that take it

-yes you know you took it- but all it is again is good nutrition. You may want

to read this I just wrote

>

http://pursuitofresearch.com/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

>

> Oh and yes -once you stop NV and start again for some reason it does take

weeks and not days for it to " work " again...don't know why on that either. Fish

oils work slower to start but once you stop them they work right away- and NV

works to start way faster but with that lag for it to work again once you stop.

>

> But again the trouble with potty training...I can only speculate so will see

if anyone else here has any thoughts -and I'll ask around. I do know most in

this group don't potty train anywhere prior to close to 4 years old and he's how

old now? 4 years old right? We do have a ton of archives on potty training

suggestions. I know in general if they have no interest you keep them in

diapers until they do- I mean there are tricks and all but if there is zero

interest....Do you want me to post some of the archives for you? Let me know!

>

> Warm regards,

>

>

>

> =====

>

[Guest guest]

Hi there!

My kids are almost 8 (girl) and 10 (boy). My son had some issues with

incontinence after he was potty trained -

While he successfully potty trained when he was 3 years old, even in

Kindergarten and 1st Grade he would have occassional accidents (usually BM's).

Here's what I learned -

My son was the kind of kid who didn't care if his diaper/pull-up/or pants were

dirty (except when he got older he did get embarrassed if he had an accident -

all except one at home). The times he would have a BM in his pants was when he

was engrossed in a game on the computer. It was as if he wasn't aware of what

his body was doing - he wasn't " listening " to his body because he was so focused

on what he was doing. He has wet the bed occassionally as well because he would

forget to go to the bathroom before bed and always has to be verbally

prompted/reminded about it.

What I've learned in my son's instance is that this is a sensory processing

issue and Occupational Therapy is VERY helpful. Instead of being tactile

defensive (or overly sensitive) like my daughter, he's more " sensory dim " in

this area, for lack of a better way of describing it (like a dim light - not to

imply that he is intellectually dim - he's very smart) - less sensitive to these

physical feelings. He's defensive to some, oblivious to others. More of a mix

with him.

In regards to the mishaps, we told him he had to listen to his body or he would

not be allowed to play on the computer. He seemed to be better able to

understand it when I talked about listening to his body and when it was telling

him to go to the bathroom. When he would start wiggling around, etc., it was

easy (and even in public) to say, " hey, are you listening to your body? What is

it telling you right now? " Verbal prompts for him to check in with how he was

feeling physically was a good cue for him. He's fine now and this is not really

an issue anymore since he chose to listen to his body. Occupational Therapy has

been great to help him be more aware of his body.

One great tip I learned from a teacher who helped potty train my daughter -

While she wanted them to physically feel it when they wet or soiled themselves

(which happens in regular underwear, otherwise the pull-ups make it too

comfortable an experience), she didn't have time to be cleaning up everything

that could potentially hit the floor. Her great solution was she would put a

child's regular underwear on first, and then a pull-up OVER that - this way the

child still felt it on cloth underwear, but it didn't hit the floor. Works

great! Wish I would have thought of it for my first one. :-)

My next favorite teacher tip was with my son - whenever he had an accident while

potty-training at school at age 3, the teacher would have him change all his

clothes himself, even if it made him late to recess, or a class he liked, etc.

Once he discovered that it took more time out of what he liked to do to change

his clothes and clean up than it did to just stop and go to the bathroom, he

started listening to his body more and going to the bathroom instead of ignoring

it. Basically it had to become more inconvenient to do it the way he had been

for him to choose another way and make a conscious effort to pay attention to

those biological signals that others more naturally pick up on without thinking

about it.

A final thought that came to mind has to do with my daughter, who has dyspraxia

- She had problems with Chronic Constipation, and our Gastroenterologist agreed

when I asked if it was possible that the muscles of her digestive tract could be

as uncoordinated as she was in terms of gross motor skills, etc. The pain and

impactions that resulted also contributed to her reluctance to going, making it

worse. We tried diet modifications and fiber supplementation to no avail.

There are even Fiber Gummies now! :-)

The Gastroenterologist recommended Miralax and this has worked GREAT. One big

plus is that it makes the need to have a BM more urgent and quicker,so she picks

up on what her body needs easier because she is more able to feel it when she

takes the Miralax(sort of creates a clearer signal for her). Thankfully it's

not addictive/habit forming plus contains no stimulants and she is still on it.

My daughter's experience makes me curious if that could be a factor as well that

makes it more difficult to know when BM's are coming, and also to be reluctant

to have them. My daughter had basically decided she wasn't going to poop ever

again. :-) Thankfully she's doing fine now.

I would NOT suggest doing Miralax and NV at the same time. I personally don't

think this would be safe. Miralax works great because it pulls water from the

intestines to soften things and move them along, and that in combination with

what is in NV may not be appropriate. I'd be worried about dehydration mainly.

Anyway, I hope this is helpful. For me the keys were helping them to become

more aware of these feelings in their bodies and teaching them how to " listen to

their bodies " , Occupational Therapy to help better regulate their sensory input,

and in my daughter's case an OTC medication that works wonders and has been

proven very safe in children.

Take Care! Hang in!

Diane

> >

> > I don't know the answer on this one about why providing healthy

food will create any issues with potty training in your son. In most cases as

you can read in the testimonials NV has helped with potty training and right

away -we even list it as one of the ways it helps here

http://pursuitofresearch.com/pursuit-of-research/

> >

> > As far as your question will your child always need to be on it -you kind of

already answered it. To me it's clear the answer is no -I mean if you stop NV

right away you notice more regressions than you do if they are on it for awhile.

Thing is just like fish oils providing essential fatty acids -you have to make

sure that in the daily diet your child does receive ALL of the essential amino

acids and nutrients that NV provides every day. They may just need them from

the NV now because they are easily digestible but I suspect if this does help

the metabolic system as world renowned doctors developed it for

http://pursuitofresearch.com/endorsed-by-the-chopra-center/ that your child may

be able to utilize proteins and other nutrients from foods that are more

difficult to digest.

> >

> > I have seen positive results on just about everyone in my family -including

my mother and of course my Aunt Leona -and we have the page how this is helping

seniors as well

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-diseases-of-the-elderly/ so I choose to take fish oils and NV every day

myself for me. While I can't say I crave fish oils I do feel better when I take

them -but I do crave NV and for those of you friends with me on Facebook to

validate what I'm saying I never looked or felt better. As many here know I

have a history of celiac disease as a child -spent years in the hospital as a

baby and young child and almost died -and to me there is nothing more important

than food that can help the body help itself. I suspect Tanner and most of the

kids can go down to a maintenance dosage of a scoop or two a day -having a

protein shake a day is healthy anyway. I've done that for years...but for me

I'm on 4 scoops a day and I don't use it as meal replacement- I use it with

meals- and I pray it keeps me from having any celiac issues flare up as I age-

which is the plan for the celiac that happens in most that I plan to try to

stop!!!

> >

> > So while your fear is that your child has to eat something healthy the rest

of his life...mine is that they don't stop making it and just hope I can take it

the rest of my life because I know how it's helping me and others in real

concrete ways you will notice. I mean I take fish oils each day because I know

they are healthy but honestly don't really notice when I take them much -but

notice if I don't the difference. NV I and other adults I know that take it

-yes you know you took it- but all it is again is good nutrition. You may want

to read this I just wrote

> >

http://pursuitofresearch.com/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

> >

> > Oh and yes -once you stop NV and start again for some reason it does take

weeks and not days for it to " work " again...don't know why on that either. Fish

oils work slower to start but once you stop them they work right away- and NV

works to start way faster but with that lag for it to work again once you stop.

> >

> > But again the trouble with potty training...I can only speculate so will see

if anyone else here has any thoughts -and I'll ask around. I do know most in

this group don't potty train anywhere prior to close to 4 years old and he's how

old now? 4 years old right? We do have a ton of archives on potty training

suggestions. I know in general if they have no interest you keep them in

diapers until they do- I mean there are tricks and all but if there is zero

interest....Do you want me to post some of the archives for you? Let me know!

> >

> > Warm regards,

> >

> >

> >

> > =====

> >

[Guest guest]

Hope all are ready for a Happy Holiday with the kiddies off from school! We let

all views be shared here but wish to respond to the statement " Miralax is safe "

(I have some archives on that below that challenge that -there's another message

board to even join on this topic where they will all challenge that thought)

Please do not take medical advice from anyone from this group -including me.

Share all with your child's doctor and get second opinions. My son Tanner's

pediatric gastroenterologist Dr. Lawrence in West Palm Beach Florida who

is highly respected did NOT recommend Miralax for Tanner, specifically as I had

even brought it up (well there were many things he didn't recommend) -the only

OTC he recommended was Milk of Magnesia to use that only if the diet

changes didn't work and only to use it if he missed one day- his starting

approach was to use foods to help the body -only to go to meds if the natural

" prescription " approach didn't work. But his approach did work and I've shared

it many times here and it's helped many others -I have much of that below. Dr.

is a traditional medical doctor and I spent hours with him speaking with

him about apraxia, motor planning, weakness, why our kids are late to train etc.

I recall the one question " Why if the method you shared with me that didn't use

drugs work so well don't more medical doctors recommend this? " And he looked at

his wrist and said with a smile " and how long did I just spend with you?! "

Writing a drug prescription is so much quicker.

Please also read about 's son who was put on Miralax for years -they

had to keep raising the dosage (Dr. Adam's point to me as the main problem for

using it in our population as it may not be tied to traditional constipation

reasons) Sadly and tragically 's son ended up flat lining in the

gut, more on that below from the archives -we don't know if the two are related

but her son and mine were very much alike -both apraxia, hypotonia, DSI, and

both attended the same preschool Summit Speech School in NJ...and both were

constipated but that we both didn't know till years later. While I never put

Tanner on meds as I tend to not use medications unless I HAVE to - did.

Why didn't either of us know our kids were both constipated? Because at that

time none of us talked about the constipation because we were told by another

group is was [OFF TOPIC] (that is what they would write at that group) and we

each thought it was something just our own son was dealing with. OMG it was

just about the whole group it was so par for the course!!! Late to train and

then once they train -constipation. There are theories on why that is. It

wasn't until I brought up Tanner's issues that the flood gate opened and since

then we all have spoken about it here. We do know food does help the issues

which may 'stem' from motor planning, weakness...and as Dr. Adam's told me once

they are constipated once due to whatever -motor planning for example or

weakness in pushing -they recall it hurts to move the bowels so they hold it and

it dries up and causes a problem that may as well become partly behavioral as

well -so there are some training approaches that help too with constipation Dr.

suggested to me (telling you the man was a genius!!) Tanner has not been

constipated in years -but for years I or my husband would have to remind him to

go to the bathroom...really. " did you go potty today " " no " " well go in there

right now " and he would and he would go!! But why did we have to remind him?!!

Since being on NV -we no longer have to remind Tanner to go to the bathroom

-he's regular ON HIS OWN everyday (that is Amazing with a capital A - you

wouldn't know if you didn't know!!) For most -NV helps the child potty train as

reported in this group http://pursuitofresearch.org/pursuit-of-research/ but as

I say below on the topic of potty training if they aren't showing any interest

-they aren't ready. That's my opinion.

Also about the comment really in question:

" I would NOT suggest doing Miralax and NV at the same time. I personally don't

think this would be safe. Miralax works great because it pulls water from the

intestines to soften things and move them along, and that in combination with

what is in NV may not be appropriate. I'd be worried about dehydration mainly. "

Don't know when I hear back but I asked for feedback from some of the world

renowned medical doctors behind NV

http://pursuitofresearch.org/endorsed-by-the-chopra-center I do know that

Nutriiveda is 100 percent food and has no known side effects or drug

interactions so again check with your doctor but no reason not to use it with

Miralax...if you wanted to use that drug (but please read the info below)

Just curious... in any sense of the word if it's being suggested to put a child

on this group that is not potty trained on a constipation drug to help with

potty training -no that's just too bizarre for anyone to suggest that

craziness!!

More and more research is finding that providing healthy foods is safer and more

effective than medications. I have many articles on the site with research to

back this up including this one

http://pursuitofresearch.org/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

Here are some archives on Miralax

" How long or often should Miralax be taken?

It may be necessary to use this medication for 2 to 4 days before a

bowel movement occurs. It is recommended that Miralax be taken for no

longer than 2 weeks.

Safety in children has not been established "

http://www.gicare.com/pated/Miralax.htm

And here's a message board just for those that have their child on

miralax or glycolax:

" This board originated as a board for those who have had, or their

children have had, significant adverse reactions to, or adverse

events after starting Miralax or Glycolax. A few examples would

include the onset of tremors, tics, changes in personality, etc. I

have been in contact with others who have had adverse reactions to

this product, and decided to create a forum so that individual and

families can post their experience here. I also encourage you to

submit your experience (it can be done anonymously if that's what you

prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is

their link:

http://www.fda.gov/medwatch/ "

miralax/

Re: miralax

Please join the group miralax

<miralax/?yguid=77953181> It's not a

large group but there's a lot of sharing of information. I remember

reading a post regarding a child with seizures - -they were told to

keep

the magnesium to 300mg per day. That amount with 3000 mg vit c might

be

enough to get your daughter off the stuff. I don't understand all the

chemistry involved -- but the miralax that is absorbed is converted

into

oxalalic crystals -- which are very damaging to the body. My belief is

that in the case of a damaged gut the % of PEG absorbed is much higher

than they say. Also, Dana has a page on Dana's View - Miralax

<http://www.danasview.net/miralax.htm>

I am amazed at how well my son did after getting him off of the stuff.

~~~~~~~~~~~~-start of archive about Dr. Adam's " prescription "

I would highly suggest a second opinion outside of your pediatrician

with a pediatric gastroenterologist and share this.

And again -an archive about what the traditional gastroenterologist

Dr. " prescribed " for Tanner which is working (just wish he

didn't have to drink nectar every day!):

" This also may have to do with some signaling problem or motor

planning aspect. Not sure -but who cares when anyone just about

anywhere can pick up pear nectar or Dole papaya fruit and gel

bowls! This works -and we love Dr. !!

> Today I took Tanner to see pediatric gastroenterologist Lawrence

> MD from Palm Beach Florida for Tanner's problem with

> constipation which we have been trying to help him with now for

the

> past 5 years or more with various MDs (Tanner is now 7) Up till

now

> nobody has wanted to put Tanner on medications -and since we've

> moved we haven't taken Tanner to see his NJ/NY MDs. I highly

> recommend Dr. if you are in Florida in that he took over an

> hour with us -was excellent with Tanner (very funny) and was very

> open to discussing off the wall theories on constipation in

apraxic

> children -a best kept secret even though it's known for autism.

Dr.

> has many patients with special needs -some with severe CP

> whose parents have to blend fruits for their constipation that

they

> can put through their feeding tube.

>

> Here is a brief summery from the prescription he gave me:

>

> Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can

> stand it -can mix with others but try plain nectar first)

> * prune juice -can be mixed with orange juice (since most kids

don't

> like it)

>

> exotic fruits- figs, dates, apricot, papaya (papaya underlined

> twice) (if he can stand it -like the nectars -these work wonders

he

> said)

>

> limit -banana, apple, rice, dairy

>

> Milk of Magnesia 2-3 tablespoons with glass of water any time he

> skips 1 day. Works 4-8 hours.

>

> Behavior Modification -10 minutes daily -no distractions. Use

> calendar stickers -every week reward for amount of BMs

> 2/ week something small

> 3-4 medium

> 5-7 large reward

>

> Dr. said that there is a chance that the problem could be

> motor planning -but he can't fix that -his goal is to get Tanner

on

> a schedule for a long period of time so that he starts going

> automatically. He doesn't want me to use the Nature's Tea due to

> the senna in it -said it can cause dependence in long term use,

and

> said that due to what I reported with Tanner's regression with too

> much fiber not to use high fiber either. He said it is possible

> that the fiber is cutting short the fatty acids in the gut. "

~~~~~~~~~~end of archive about Dr. -start of 's about

Miralax

may have nothing to do with her son's condition -but we all should be aware of

the lack of research in this area.

Thu Dec 11, 2003 8:19 am

" D. Rothweiler " kdr2@...

constipation

Hi

We seem to have so much in common.

has had a constipation problem since he was born. He's been on

Miralax for over a year now and it's the same thing as you, it makes it

watery so he just has accidents all day long. It's very true that their

rectums get stretched out so it's better to keep them flowing than let them

get constipated. You don't want any stool to put pressure on the rectum

wall. My frustration is that he can't control it and has accidents all day

long. He tells me it just comes out too fast and he doesn't have time to

get to the bathroom.

Good luck! I hope it goes well for you.

formerly in NJ, now in MA

Mon Dec 15, 2003 9:26 pm

" D. Rothweiler " kdr2@...

constipation

Hi W

Thank you for your concern regarding my post about Miralax. I actually have

an extenuating circumstance that I've been meaning to post to this group to

see if anyone can relate to but this is all recent news to me and it's quite

painful to talk about. I'll take this opportunity to ask anyway because

someone here may be able to provide me with some info.

My son was just diagnosed a few weeks ago with Pseudo Obstruction

Syndrome. Basically, none of the nerves & muscles in his colon that are

supposed to work together to move the stool through are working. He has

zero motility in his colon. Because of this, the only way at all to get his

stool to come out is by having it leak out watery. It's a pain to live with

but the alternative is that he gets impacted. I've tried and tried to

adjust the dosage and if it doesn't come out like water, it doesn't come out

at all. My poor son has had every test in the book over the past 3 years in

NJ. In June, we had to move to Massachusetts so I went into a specialist in

Boston who is supposed to be internationally known, well published, etc..

and within one visit, he had it pegged that it was a motility problem. I

have a lot of anger for my old dr. who had put my son through every test in

the world and couldn't figure it out. My last visit with him before he left

ended with him telling me that I had to get a lot of fiber into him and to

get him to sit on the potty more often and that some kids were just

chronically constipated. Meanwhile, my son's stomach is so distended that

he looks about 8 months pregnant. Anyway, that's why I have to keep the

Miralax so strong.

My question to the group is: 1. Has anyone ever heard of or known someone

with Pseudo Obstruction? 2. My son will have to have a Cecostomy for

several years and I'm wondering again if anyone knows anyone with a child

with a cecostomy so I can pick their brains? My surgeon told me it's

basically the same type of port used as a feeding tube. If the cecostomy

doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked

out about the whole thing. Never in my wildest, worst dreams did I imagine

that my son's constipation could be something so serious. I also hesitated

to post this because I don't want to scare anyone out there who has a child

with constipation. My new gastro. told me that the reason my old dr. didn't

catch this is because it is quite rare. If I could suggest one thing

though, it would be that if you have a child who is unresponsive to every

conventional type of constipation remedy as my son is (nothing ever worked),

just ask your dr. if he has ruled out a motility disorder. There are many

different types (as I'm learning) and I wish I had known more before.

Sorry so long but I've got a lot on my plate here. If anyone can share any

info. with me on Pseudo Obstruction or cecostomy's, please let me know.

Thanks in advance!

in MA

kdr2@...

~~~~~~~~~~~~~~~~~~~~~~~~~end of archives

=====

[Guest guest]

Hi ,

I hope you are having a good holiday break too! :-)

Just to clarify after reading your post:

1. Of course no intention to dispense medical advice. ALWAYS check with your

doctor. I do.

2. Re: my daughter and Miralax - we tried all the dietary suggestions (the ones

your gastroenterologist suggested were also suggested to me as well) and none

worked. Starting Miralax was not done lightly. Only after a number of

impactions, one of which almost ended her in the hospital. Needless to say the

treatments for impaction are traumatic for a child with sensory issues, plus the

issues of how chronic constipation impacts the intestinal muscles.

3. As you said and remind others - I didn't try Miralax until my doctor

recommended it, and other options were not successful.

4. I certainly do not mean to imply that Miralax should be used for potty

training! Of course not. I just shared where we ended up under a doctor's care

and recommendation after trying dietary and behavioral interventions first

(always my first choice - that's what worked with my son). I brought it up

because Chronic Constipation and motility issues, as stated common in our kids,

impact potty training. It's worth investigating with a knowledgeable doctor if

it's an ongoing issue.

5. The information about Miralax side effects in some is interesting. I will

keep an eye on that and take it into consideration. We have had none of these

problems. If we had, I would have taken her off. We also have had no problems

with having to increase the dose over time. She is on a dose that according to

my pharmacist (and I talked to more than one) is 25% of the maximum dose for my

child's height and weight.

6. I researched Miralax and checked with alot of people before I put my

daughter on it. I spoke with not only the gastroenterologist, but also a very

good friend who is a Pediatrician on faculty at one of the Medical Schools where

I live (and very conservative regarding kids and medication)and also with a

number of pharmacists. All recommended to try it, that it is commonly used in

children with these issues, and that it is not habit forming like laxitives are.

That's what I was told by professionals I trust and who are good in their

fields, so I decided to try it. None had seen adverse effects with long-term

use. For us it's working fine. That's our experience. I cannot say that will

be everyone's experience. As always, check with your doctor and others you

trust.

7. I don't use Miralax with my son. Verbal prompts and dietary intervention

when he was younger was all he needed. He learned to listen to his body.

8. I noticed you said that Miralax is not recommended for use in children, and

there isn't research on it's impact on a child. Yes, it does state on the

bottle to check with your doctor for ages 16 and under. Yet, doctors routinely

use this medication in children for whom other interventions have not worked.

It's interesting to me that NV is being strongly advocated for children on this

sight, and it is not recommended for use in children and there is no research

yet. I know the doctors associated with it are fine with it, and I know we

respectfully disagree on whether NV should be considered a medicinal treatment

or a food supplement since it's made with naturally occurring elements. My point

is there are a number of things that are recommended for our children that are

based on experience and what is known about how these elements work, and as

parents we have to assess and see what works for our children and respect each

others' choices.

9. If a parent chooses to try NV based on doctor recommendation, and it does

what is claimed, then presumably Miralax wouldn't be necessary..... Just my

personal opinion, as I said. And you're right - neither one of us is Doctors -

just well researched moms! :-) I did not mean to imply that they would somehow

be " contraindicated " , as a pharmacist would say.

10. I think as parents we're all trying to find what works best for our

children that supports them in being healthy and do the best they can in life.

I think a free exchange of ideas and different points raised helps us to find

what might be the best fit for our children, and to always periodically

re-evaluate as our children grow and see where they are at now. I'm glad

there's a place for that. My personal first choice is interventions that

involve no supplementation at all - OT, PT, ST, and a healthy diet.

But enough about that - here's the GREAT News. :-) My daughter is doing so

much better that she'll be phasing out of OT this coming year! :-) It has

really helped her and she's now in age range for motor planning and

coordination. Her sensory system is now more integrated as well. Her Dyslexia

tutor also told me that she's doing so great on her reading that she doesn't

need to continue that right now either (can always come back later if needed) -

That's the best Christmas Present ever! :-)

My son is also doing better as well since we started OT. I know for us OT has

made the biggest difference out of anything we've done. It's not overnight, but

it has really worked for us. I think it's had a hand in improving ann's

Dyslexia too. :-)

Happy Holidays Everyone!

Diane

>

> Hope all are ready for a Happy Holiday with the kiddies off from school! We

let all views be shared here but wish to respond to the statement " Miralax is

safe " (I have some archives on that below that challenge that -there's another

message board to even join on this topic where they will all challenge that

thought)

>

> Please do not take medical advice from anyone from this group -including me.

Share all with your child's doctor and get second opinions. My son Tanner's

pediatric gastroenterologist Dr. Lawrence in West Palm Beach Florida who

is highly respected did NOT recommend Miralax for Tanner, specifically as I had

even brought it up (well there were many things he didn't recommend) -the only

OTC he recommended was Milk of Magnesia to use that only if the diet

changes didn't work and only to use it if he missed one day- his starting

approach was to use foods to help the body -only to go to meds if the natural

" prescription " approach didn't work. But his approach did work and I've shared

it many times here and it's helped many others -I have much of that below. Dr.

is a traditional medical doctor and I spent hours with him speaking with

him about apraxia, motor planning, weakness, why our kids are late to train etc.

I recall the one question " Why if the method you shared with me that didn't use

drugs work so well don't more medical doctors recommend this? " And he looked at

his wrist and said with a smile " and how long did I just spend with you?! "

Writing a drug prescription is so much quicker.

>

> Please also read about 's son who was put on Miralax for years

-they had to keep raising the dosage (Dr. Adam's point to me as the main problem

for using it in our population as it may not be tied to traditional constipation

reasons) Sadly and tragically 's son ended up flat lining in the

gut, more on that below from the archives -we don't know if the two are related

but her son and mine were very much alike -both apraxia, hypotonia, DSI, and

both attended the same preschool Summit Speech School in NJ...and both were

constipated but that we both didn't know till years later. While I never put

Tanner on meds as I tend to not use medications unless I HAVE to - did.

Why didn't either of us know our kids were both constipated? Because at that

time none of us talked about the constipation because we were told by another

group is was [OFF TOPIC] (that is what they would write at that group) and we

each thought it was something just our own son was dealing with. OMG it was

just about the whole group it was so par for the course!!! Late to train and

then once they train -constipation. There are theories on why that is. It

wasn't until I brought up Tanner's issues that the flood gate opened and since

then we all have spoken about it here. We do know food does help the issues

which may 'stem' from motor planning, weakness...and as Dr. Adam's told me once

they are constipated once due to whatever -motor planning for example or

weakness in pushing -they recall it hurts to move the bowels so they hold it and

it dries up and causes a problem that may as well become partly behavioral as

well -so there are some training approaches that help too with constipation Dr.

suggested to me (telling you the man was a genius!!) Tanner has not been

constipated in years -but for years I or my husband would have to remind him to

go to the bathroom...really. " did you go potty today " " no " " well go in there

right now " and he would and he would go!! But why did we have to remind him?!!

>

> Since being on NV -we no longer have to remind Tanner to go to the bathroom

-he's regular ON HIS OWN everyday (that is Amazing with a capital A - you

wouldn't know if you didn't know!!) For most -NV helps the child potty train as

reported in this group http://pursuitofresearch.org/pursuit-of-research/ but as

I say below on the topic of potty training if they aren't showing any interest

-they aren't ready. That's my opinion.

>

> More and more research is finding that providing healthy foods is safer and

more effective than medications. I have many articles on the site with research

to back this up including this one

http://pursuitofresearch.org/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/

>

> Here are some archives on Miralax

>

>

> " How long or often should Miralax be taken?

> It may be necessary to use this medication for 2 to 4 days before a

> bowel movement occurs. It is recommended that Miralax be taken for no

> longer than 2 weeks.

> Safety in children has not been established "

> http://www.gicare.com/pated/Miralax.htm

>

> And here's a message board just for those that have their child on

> miralax or glycolax:

>

> " This board originated as a board for those who have had, or their

> children have had, significant adverse reactions to, or adverse

> events after starting Miralax or Glycolax. A few examples would

> include the onset of tremors, tics, changes in personality, etc. I

> have been in contact with others who have had adverse reactions to

> this product, and decided to create a forum so that individual and

> families can post their experience here. I also encourage you to

> submit your experience (it can be done anonymously if that's what you

> prefer) to the FDA's MedWatch Adverse Event Reporting System. Here is

> their link:

> http://www.fda.gov/medwatch/ "

> miralax/

>

> Re: miralax

>

>

>

> Please join the group miralax

> <miralax/?yguid=77953181> It's not a

> large group but there's a lot of sharing of information. I remember

> reading a post regarding a child with seizures - -they were told to

> keep

> the magnesium to 300mg per day. That amount with 3000 mg vit c might

> be

> enough to get your daughter off the stuff. I don't understand all the

> chemistry involved -- but the miralax that is absorbed is converted

> into

> oxalalic crystals -- which are very damaging to the body. My belief is

> that in the case of a damaged gut the % of PEG absorbed is much higher

> than they say. Also, Dana has a page on Dana's View - Miralax

> <http://www.danasview.net/miralax.htm>

>

> I am amazed at how well my son did after getting him off of the stuff.

>

> ~~~~~~~~~~~~-start of archive about Dr. Adam's " prescription "

>

>

>

> I would highly suggest a second opinion outside of your pediatrician

> with a pediatric gastroenterologist and share this.

>

> And again -an archive about what the traditional gastroenterologist

> Dr. " prescribed " for Tanner which is working (just wish he

> didn't have to drink nectar every day!):

>

> " This also may have to do with some signaling problem or motor

> planning aspect. Not sure -but who cares when anyone just about

> anywhere can pick up pear nectar or Dole papaya fruit and gel

> bowls! This works -and we love Dr. !!

>

> > Today I took Tanner to see pediatric gastroenterologist Lawrence

> > MD from Palm Beach Florida for Tanner's problem with

> > constipation which we have been trying to help him with now for

> the

> > past 5 years or more with various MDs (Tanner is now 7) Up till

> now

> > nobody has wanted to put Tanner on medications -and since we've

> > moved we haven't taken Tanner to see his NJ/NY MDs. I highly

> > recommend Dr. if you are in Florida in that he took over an

> > hour with us -was excellent with Tanner (very funny) and was very

> > open to discussing off the wall theories on constipation in

> apraxic

> > children -a best kept secret even though it's known for autism.

> Dr.

> > has many patients with special needs -some with severe CP

> > whose parents have to blend fruits for their constipation that

> they

> > can put through their feeding tube.

> >

> > Here is a brief summery from the prescription he gave me:

> >

> > Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can

> > stand it -can mix with others but try plain nectar first)

> > * prune juice -can be mixed with orange juice (since most kids

> don't

> > like it)

> >

> > exotic fruits- figs, dates, apricot, papaya (papaya underlined

> > twice) (if he can stand it -like the nectars -these work wonders

> he

> > said)

> >

> > limit -banana, apple, rice, dairy

> >

> > Milk of Magnesia 2-3 tablespoons with glass of water any time he

> > skips 1 day. Works 4-8 hours.

> >

> > Behavior Modification -10 minutes daily -no distractions. Use

> > calendar stickers -every week reward for amount of BMs

> > 2/ week something small

> > 3-4 medium

> > 5-7 large reward

> >

> > Dr. said that there is a chance that the problem could be

> > motor planning -but he can't fix that -his goal is to get Tanner

> on

> > a schedule for a long period of time so that he starts going

> > automatically. He doesn't want me to use the Nature's Tea due to

> > the senna in it -said it can cause dependence in long term use,

> and

> > said that due to what I reported with Tanner's regression with too

> > much fiber not to use high fiber either. He said it is possible

> > that the fiber is cutting short the fatty acids in the gut. "

>

> ~~~~~~~~~~end of archive about Dr. -start of 's about

>

> Miralax

> may have nothing to do with her son's condition -but we all should be aware of

> the lack of research in this area.

>

> Thu Dec 11, 2003 8:19 am

> " D. Rothweiler " kdr2@...

> constipation

>

>

> Hi

> We seem to have so much in common.

>

> has had a constipation problem since he was born. He's been on

> Miralax for over a year now and it's the same thing as you, it makes it

> watery so he just has accidents all day long. It's very true that their

> rectums get stretched out so it's better to keep them flowing than let them

> get constipated. You don't want any stool to put pressure on the rectum

> wall. My frustration is that he can't control it and has accidents all day

> long. He tells me it just comes out too fast and he doesn't have time to

> get to the bathroom.

>

> Good luck! I hope it goes well for you.

>

>

> formerly in NJ, now in MA

>

> Mon Dec 15, 2003 9:26 pm

> " D. Rothweiler " kdr2@...

> constipation

>

>

> Hi W

> Thank you for your concern regarding my post about Miralax. I actually have

> an extenuating circumstance that I've been meaning to post to this group to

> see if anyone can relate to but this is all recent news to me and it's quite

> painful to talk about. I'll take this opportunity to ask anyway because

> someone here may be able to provide me with some info.

>

> My son was just diagnosed a few weeks ago with Pseudo Obstruction

> Syndrome. Basically, none of the nerves & muscles in his colon that are

> supposed to work together to move the stool through are working. He has

> zero motility in his colon. Because of this, the only way at all to get his

> stool to come out is by having it leak out watery. It's a pain to live with

> but the alternative is that he gets impacted. I've tried and tried to

> adjust the dosage and if it doesn't come out like water, it doesn't come out

> at all. My poor son has had every test in the book over the past 3 years in

> NJ. In June, we had to move to Massachusetts so I went into a specialist in

> Boston who is supposed to be internationally known, well published, etc..

> and within one visit, he had it pegged that it was a motility problem. I

> have a lot of anger for my old dr. who had put my son through every test in

> the world and couldn't figure it out. My last visit with him before he left

> ended with him telling me that I had to get a lot of fiber into him and to

> get him to sit on the potty more often and that some kids were just

> chronically constipated. Meanwhile, my son's stomach is so distended that

> he looks about 8 months pregnant. Anyway, that's why I have to keep the

> Miralax so strong.

>

> My question to the group is: 1. Has anyone ever heard of or known someone

> with Pseudo Obstruction? 2. My son will have to have a Cecostomy for

> several years and I'm wondering again if anyone knows anyone with a child

> with a cecostomy so I can pick their brains? My surgeon told me it's

> basically the same type of port used as a feeding tube. If the cecostomy

> doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked

> out about the whole thing. Never in my wildest, worst dreams did I imagine

> that my son's constipation could be something so serious. I also hesitated

> to post this because I don't want to scare anyone out there who has a child

> with constipation. My new gastro. told me that the reason my old dr. didn't

> catch this is because it is quite rare. If I could suggest one thing

> though, it would be that if you have a child who is unresponsive to every

> conventional type of constipation remedy as my son is (nothing ever worked),

> just ask your dr. if he has ruled out a motility disorder. There are many

> different types (as I'm learning) and I wish I had known more before.

>

> Sorry so long but I've got a lot on my plate here. If anyone can share any

> info. with me on Pseudo Obstruction or cecostomy's, please let me know.

> Thanks in advance!

>

> in MA

> kdr2@...

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~end of archives

>

> =====

>