Re: Withholding thoughts!!

November 2, 2008

Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him

off. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Sunday, November 2, 2008 8:43:49 AMSubject: Withholding thoughts!!

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 2, 2008

Did he have the biopsy for nerve cells or just the balloon? I have

read about the balloon test, that is for muscle contractions. So your

son didnt test negative for the test? Mega colon also makes sense on

the holding thought, takes lots of extra stool to stimulate the

contractions. Can take days to move verses daily as you said if it

doesnt harden first! Jennie<><

>

> Cody has had the motility/nerve cell testing, his colon has been

stretched out so far that until he is extremely full, then he cannot

feel anything. The test was referred to as the " balloon test " . We (my

husband and I) believe it started when he was being potty trained, he

didn't want to Stop playing and go to the bathroom, we were always

catching him holding it. Then that would cause constipation, then it

hurt, then he would hold it more so then he would be constipated,

etc...this continued for years, now he is stretched out. It may or

may not be reversible, due to his age. Right now were are using the

benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime

only). He is going a lot about every other day (if he makes it 2 full

days and still has not gone that night I give him 2 spoons). I am

going to continue using this for six months (if there are no

compications from the meds), then slowly take him off.

> Deanna,

> Fort Worth, Texas

> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08),

Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain

cedar & cats)(3/08), Eczema (since birth).

>

> ________________________________

>

> To: miralax

> Sent: Sunday, November 2, 2008 8:43:49 AM

> Subject: Withholding thoughts!!

>

> I wanted to bring this subject up due to I really feel that

withholding

> diagnoses in many is wrong. Im sure there are those that do this,

but I

> feel it is just about impossible to hold though if the muscle and

> nerves are working correctly. The body just wouldnt allow holding

to

> long in nature. Example is during sleep, a child couldnt conciensly

> hold in sleep, infact we are so relaxed that during sleep state

there

> couldnt be concience holding. Most of my sons stool movements are

> during sleep or first immediate waking! Stool pressure on the

> intestinal walls stimulates the muscle contractions! This is if the

> nerve cells are working! If the nerve cells are missing/damaged

than

> this would appear as holding to some, but not the case. I just

wonder

> with many being diagnosed with this withholding theory how many

have

> had the motility/nerve cell testing? And then still diagnosed with

> withholding? Jennie<><

>

November 2, 2008

Eczema (since birth).

There is more going on here than holding.

Subject: Re: Withholding thoughts!!To: miralax Date: Sunday, November 2, 2008, 2:24 PM

Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him

off. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 8:43:49 AMSubject: Withholding thoughts!!

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 2, 2008

Our ped told me for two years that my daughter was holding. 2 weeks into these activator adjustments and I my daughter says I have to poop and she poops and it comes out normal and with little effort. I have had chronic constipation for many years you want to go but you cant it is like my daughter would say "my poopy doesnt want to come out" I do agree that things can get stretched out and that needs time to mend, but after it heals there shouldnt be an issue.

Subject: Withholding thoughts!!To: miralax Date: Sunday, November 2, 2008, 8:43 AM

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 4, 2008

The withholding diagnoses in many may be wrong, true, but I don't

agree that it is impossible to hold if the muscle and nerves are

working correctly or that the body wouldn't allow withholding too

long in nature. My son had been withholding for months - sometimes

for weeks at a time - and the doctors never diagnosed him with

withholding, they just told us to change his diet and put him on

Miralax without giving us any diagnosis. Once I finally figured out

that he WAS withholding and implemented behavioral/psychological

interventions along with a psychologist's help, he has stopped

withholding and begun pooping in the potty. It took us a year to get

to this point. Prior to that he would hold so long that he would

become impacted, we were told to do enemas, suppositories, Miralax,

bowel cleasers, you name it. He continued to be totally constipated

until we determined that he was actually withholding and began

dealing with his fear.

That said, I'm sure there are many children who are improperly

diagnosed with withholding. I would just be careful not to discount

withholding as a very real cause of some children's constipation. I

feel strongly about this because we were led down the wrong path for

months and told by doctors to treat it as a physical problem when it

was really behavioral/psychological. My advice would be for parents

to look at all the possible causes of their child's constipation

before discounting anything. For many children, the causes will be

physical in nature, but for others they may not be.

>

> I wanted to bring this subject up due to I really feel that

withholding

> diagnoses in many is wrong. Im sure there are those that do this,

but I

> feel it is just about impossible to hold though if the muscle and

> nerves are working correctly. The body just wouldnt allow holding

to

> long in nature. Example is during sleep, a child couldnt

conciensly

> hold in sleep, infact we are so relaxed that during sleep state

there

> couldnt be concience holding. Most of my sons stool movements are

> during sleep or first immediate waking! Stool pressure on the

> intestinal walls stimulates the muscle contractions! This is if

the

> nerve cells are working! If the nerve cells are missing/damaged

than

> this would appear as holding to some, but not the case. I just

wonder

> with many being diagnosed with this withholding theory how many

have

> had the motility/nerve cell testing? And then still diagnosed with

> withholding? Jennie<><

>

November 5, 2008

What behavioral/psychological interventions did you use? I am

working on this with my son.

thanks, kelly

> >

> > I wanted to bring this subject up due to I really feel that

> withholding

> > diagnoses in many is wrong. Im sure there are those that do

this,

> but I

> > feel it is just about impossible to hold though if the muscle

and

> > nerves are working correctly. The body just wouldnt allow

holding

> to

> > long in nature. Example is during sleep, a child couldnt

> conciensly

> > hold in sleep, infact we are so relaxed that during sleep state

> there

> > couldnt be concience holding. Most of my sons stool movements

are

> > during sleep or first immediate waking! Stool pressure on the

> > intestinal walls stimulates the muscle contractions! This is if

> the

> > nerve cells are working! If the nerve cells are missing/damaged

> than

> > this would appear as holding to some, but not the case. I just

> wonder

> > with many being diagnosed with this withholding theory how many

> have

> > had the motility/nerve cell testing? And then still diagnosed

with

> > withholding? Jennie<><

> >

>

November 5, 2008

Hi ,

I just posted our approach in the files section yesterday. Let me

know if you can't find it. I think I titled it " what helped our

preschooler. "

Cristina

> > >

> > > I wanted to bring this subject up due to I really feel that

> > withholding

> > > diagnoses in many is wrong. Im sure there are those that do

> this,

> > but I

> > > feel it is just about impossible to hold though if the muscle

> and

> > > nerves are working correctly. The body just wouldnt allow

> holding

> > to

> > > long in nature. Example is during sleep, a child couldnt

> > conciensly

> > > hold in sleep, infact we are so relaxed that during sleep

state

> > there

> > > couldnt be concience holding. Most of my sons stool movements

> are

> > > during sleep or first immediate waking! Stool pressure on the

> > > intestinal walls stimulates the muscle contractions! This is

if

> > the

> > > nerve cells are working! If the nerve cells are

missing/damaged

> > than

> > > this would appear as holding to some, but not the case. I just

> > wonder

> > > with many being diagnosed with this withholding theory how

many

> > have

> > > had the motility/nerve cell testing? And then still diagnosed

> with

> > > withholding? Jennie<><

> > >

> >

>

November 5, 2008

I am open to any suggestions or opinions. I have a very close relationship to my child, I feel as though I know him well, but there may be things I am ignorant to or have just flat out overlooked. He has 7 different docs, some only by definition. He has been tested for so many things. See, my husband and my older son both withheld. They both admit it, but it did not go on for more than a couple of years. Cody still holds it. We catch him, he admits it, he claims it will hurt. Now that we are using the Benefiber and mineral oil, he is getting over his fear. His muscle in his colon is stretched out dramatically, he cannot feel the urge to go until he is full (real full). Then he is so full he is scared it will hurt. Now with the Benefiber giving him bulk, he was scared at first, now he is not as scared and tells me he wants to keep on taking this combination because it feels like it is going to hurt but it

doesn't. There is a scientific explanation but I can't remember it all, the documentaion is put away. I think it is called the spincter muscle, and the test I believe was called a mamometry or something like that. Right now, everything seems to be working better. I fear the mineral oil though, being it is a petro chemical. Cody got really really sick last year, I think it had something to do with the Miralax. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Sunday, November 2, 2008 9:18:36 PMSubject: Re: Withholding thoughts!!

Eczema (since birth).

There is more going on here than holding.

From: deanna gentry <dkg116yahoo (DOT) com>Subject: Re: Withholding thoughts!!To: miralax@yahoogroups .comDate: Sunday, November 2, 2008, 2:24 PM

Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him

off. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 8:43:49 AMSubject: Withholding thoughts!!

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 5, 2008

No he hasn't had the biopsy for nerve cells, could you explain that one a little? I will request it, if needed. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Sunday, November 2, 2008 3:12:14 PMSubject: Re: Withholding thoughts!!

Did he have the biopsy for nerve cells or just the balloon? I have read about the balloon test, that is for muscle contractions. So your son didnt test negative for the test? Mega colon also makes sense on the holding thought, takes lots of extra stool to stimulate the contractions. Can take days to move verses daily as you said if it doesnt harden first! Jennie<><>> Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were

always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth). > > > > > ____________

_________ _________ __> From: Jennie <mykidshisgift@ ...>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be concience holding. Most of my sons stool movements are > during sleep or first immediate waking! Stool pressure

on the > intestinal walls stimulates the muscle contractions! This is if the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

You know, he had a colonoscopy in February, just weeks after the balloon test. They did biopsies, would that biopsy include nerve cell? They did a EGD at the same time and did biopsies of the upper, he had biopsies done throughout his gi tract. Last month, he had another EGD, no colonoscopy. This was done due to his EE, he will now have an EGD every 3 months until he gets better. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Sunday, November 2, 2008 3:12:14 PMSubject: Re: Withholding thoughts!!

Did he have the biopsy for nerve cells or just the balloon? I have read about the balloon test, that is for muscle contractions. So your son didnt test negative for the test? Mega colon also makes sense on the holding thought, takes lots of extra stool to stimulate the contractions. Can take days to move verses daily as you said if it doesnt harden first! Jennie<><>> Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were

always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth). > > > > > ____________

_________ _________ __> From: Jennie <mykidshisgift@ ...>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be concience holding. Most of my sons stool movements are > during sleep or first immediate waking! Stool pressure

on the > intestinal walls stimulates the muscle contractions! This is if the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

Thanks Cristina,

I think I saw your post a few weeks ago. my son has been withholding

for at least a year. The GI had me put him on kondremul for the

past 8 months to loosen stool. this has worked but i have been

unable to potty train him. he just turned 3. he just started

preschool and the preschool teacher suggested taking him off of the

mineral oil and starting fresh. which my GI of course was against.

coincidentally this was about 2 weeks ago when i saw your first

post. he was fine for a few days and then withheld last week for 4

days. i went to dollar store and got a bunch of toy cars and

wrapped them and called them poo presents. i was trying to kind of

do what you did. well he got one each time he pooped in his

diaper. he finally went 2 gigantic ones in 2 days and has been

going ever since without holding. i did pull him completely off of

milk and put him on soy silk. i also put him on a probiotic. now i

have been in the process of potty training and it is slow going, but

once i am sure he is done holding his poop i am going to really

committ to potty training. i just received the kirkman labs

probiotic wafer which is supposed to be pretty good.

i wanted to say thanks, because i had just been thinking that my son

needed some type of behavior intervention when i saw your post 2

weeks ago. i wholeheartedly believe that he is a true withholder,

though he may have issues with milk constipating him. i will have

to see how it goes. originally it was bananas that constipated him

when it started. i am sure of it. so i dont allow him to have

those.

thanks again, i will keep you posted on how things go. my question

is...how do i proceed with potty training at this point? he can

hold his pee for a couple hours, but he is more interested in

wearing pullups at this point. i think he is ready to train.

> > > >

> > > > I wanted to bring this subject up due to I really feel that

> > > withholding

> > > > diagnoses in many is wrong. Im sure there are those that do

> > this,

> > > but I

> > > > feel it is just about impossible to hold though if the

muscle

> > and

> > > > nerves are working correctly. The body just wouldnt allow

> > holding

> > > to

> > > > long in nature. Example is during sleep, a child couldnt

> > > conciensly

> > > > hold in sleep, infact we are so relaxed that during sleep

> state

> > > there

> > > > couldnt be concience holding. Most of my sons stool

movements

> > are

> > > > during sleep or first immediate waking! Stool pressure on

the

> > > > intestinal walls stimulates the muscle contractions! This is

> if

> > > the

> > > > nerve cells are working! If the nerve cells are

> missing/damaged

> > > than

> > > > this would appear as holding to some, but not the case. I

just

> > > wonder

> > > > with many being diagnosed with this withholding theory how

> many

> > > have

> > > > had the motility/nerve cell testing? And then still

diagnosed

> > with

> > > > withholding? Jennie<><

> > > >

> > >

> >

>

November 5, 2008

EGD?? Honestly I dont know about your sons type of biopsies! I found out when our new gastro said our son needed biopsy and I told him about him already having one a couple of years earlier, he said this was different. Apparently these ones are deeper into the intestinal wall and now he is going back to a surgeon gastro that is going even deeper...uuugh! Hopefully this is what your son already had done, you can askthe gastro! Our son also has had uppper and lower scope and he has issues with his esophogus! Apparently the balloon is an alternative test also to test the contractions andIm guessing maybe nerve ability also! You know we suspected the guillian barre withour son just after his vaccine reaction. In reading your sons diagnoses it seems that he is really struggling with viral issues, could most likely be his gi issues. Seems viral/bacteria issues can

really mess with the gi! Has he been treated for the viral issues? Beings there is no scripts to deal with the viral have you considered or tried natural like OLE etc? We really feel our sons viral symptoms got under control with these methods. Jennie<><

Subject: Re: Re: Withholding thoughts!!To: miralax Date: Wednesday, November 5, 2008, 11:36 AM

You know, he had a colonoscopy in February, just weeks after the balloon test. They did biopsies, would that biopsy include nerve cell? They did a EGD at the same time and did biopsies of the upper, he had biopsies done throughout his gi tract. Last month, he had another EGD, no colonoscopy. This was done due to his EE, he will now have an EGD every 3 months until he gets better. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 3:12:14 PMSubject: Re: Withholding thoughts!!

Did he have the biopsy for nerve cells or just the balloon? I have read about the balloon test, that is for muscle contractions. So your son didnt test negative for the test? Mega colon also makes sense on the holding thought, takes lots of extra stool to stimulate the contractions. Can take days to move verses daily as you said if it doesnt harden first! Jennie<><>> Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it.

Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth). > > > > > ____________ _________ _________ __> From:

Jennie <mykidshisgift@ ...>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be concience holding. Most of my sons stool movements are > during sleep or first immediate waking! Stool pressure on the > intestinal walls stimulates the muscle contractions! This is if

the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

Sounds as though you found somethings that are working with your son, that is great! You mentioned fear with the mineral oil, it works great, but you well notice more illnesses. It tends to coat the intestinal walls and causes some issues with absorbtion with nutrition and especially medications. Our neuro recommended to avoid and if used to be sure and wait in between for hours of medications. When our son was younger and ped put him on mineral oil(we didnt realize this at the time), but antibiotics and medications just didnt work, I thought he just had serious immune issues until our neuro told us about the coating. Once we took him off the oil we seen dramatic differences. Now at this point it seems important to use this with your son, it sounds as though he has mega colon and you cant let that get worse! Maybe use at night only etc. I have heard that olive

oil works as good and it doesnt coat as far as i know, infact with your sons viral issues this could really benefit him(the olive oil), it has antiviral/bacteria qualities. Now i havent tried the olive oil yet for our son, I really need to when he starts to back up, but in saying that we now know his isnt due to hard stools, infact they stay very loose, it is the nerve cell issue. Jennie<><

From: deanna gentry <dkg116yahoo (DOT) com>Subject: Re: Withholding thoughts!!To: miralax@yahoogroups .comDate: Sunday, November 2, 2008, 2:24 PM

Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him

off. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 8:43:49 AMSubject: Withholding thoughts!!

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 5, 2008

I know your sick of me by now. Have you had him evaluated by a chiro preferable one like nucca or activator. I really think your sons atlas is out because of that excema. I know it sounds crazy and all, maybe you could find someone to just evaluate him and rule it out.

From: deanna gentry <dkg116yahoo (DOT) com>Subject: Re: Withholding thoughts!!To: miralax@yahoogroups .comDate: Sunday, November 2, 2008, 2:24 PM

Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him

off. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 8:43:49 AMSubject: Withholding thoughts!!

I wanted to bring this subject up due to I really feel that withholding diagnoses in many is wrong. Im sure there are those that do this, but I feel it is just about impossible to hold though if the muscle and nerves are working correctly. The body just wouldnt allow holding to long in nature. Example is during sleep, a child couldnt conciensly hold in sleep, infact we are so relaxed that during sleep state there couldnt be concience holding. Most of my sons stool movements are during sleep or first immediate waking! Stool pressure on the intestinal walls stimulates the muscle contractions! This is if the nerve cells are working! If the nerve cells are missing/damaged than this would appear as holding to some, but not the case. I just wonder with many being diagnosed with this withholding theory how many have had the motility/nerve cell testing? And then still diagnosed with withholding?

Jennie<><

November 5, 2008

Hi ,

That is great that you are starting to see some progress! Regarding

your question, my suggestions would be:

1) Continue to keep him off the milk and any other foods that you

think could be constipating and keep up the probiotics. I do that

for my son as well. Even though my son's constipation is due to

withholding, I want to make it as easy as possible for him to go

when he feels the urge.

2) Does he show interest in wearing underwear or does he feel more

comfortable in pull-ups right now? If he still likes his pull-ups,

then maybe consider letting him keep them for now. The main thing is

to get him to go poop in his pull-up without withholding, which it

sounds like he is starting to do (yay!). I would let him continue

having lots of successes and rewards pooping in the pull-up for a

little while to really ingrain positivity around his pooping

behavior. Rewards are really important (at least they were for us!)

And if he has slips for any reason and does withhold, just ignore

the behavior, clean up and move on. The only reaction we should give

is positive reaction to positive behaviors.

To begin potty training (even if still in pull up), you could try a

potty sit with him if he is open to it once or twice a day at

regular times (e.g., morning and evening about an 30-60 min after

meals). Consider offering him a candy (or other small reward) just

for sitting down and trying if he is hesitant to do so. If something

comes out great, if not, that's OK too. The idea would be to just

start getting him used to sitting at a regular time each day.

Ideally, he would have a poop on the potty during one of these

regular potty sits so that you could make a big deal about it for

him and give him lots of positive feedback etc. plus ANOTHER reward

for pooping IN the potty. My suggestion would be making the reward

for pooping in the potty different than the reward for pooping in

the pull-up (ideas – small cookies, candies, toys). Also, I highly

recommend getting a good pooping book and reading it to him while he

is sitting or at another time during the day. The book should

include something about how the body works to make poop, etc. and

about how poop is normal. I have a couple that I could recommend

that I think are good. Also, talking about some bodily function

concepts might help. Things we talk about are: we " push poop out of

our bodies " when we feel " Mr. Poo knocking at the door " and how we

eat food and the parts that we don't need turn into poop. We always

wave bye-bye to " Mr Poo and Miss Wee " who get flushed down the

toilet to play with their friends in the big lake (no i didn't make

all this up - i picked it up here and there from pottying books

LOL!)

If you make the reward for pooping in the potty enticing enough,

then he might start initiating it on his own (even while still in

the pull-up) at times other than his regular potty sits. This is

what happened with our son.

You can move him to underwear whenever during this process you feel

he is ready, but I would suggest not moving him to underwear if he

is resisting it for any reason. There are other things you could do

to get him to warm up to the idea of underwear later if that goes on

too long. But the main thing is getting him to poop in the potty –

pullup or no pullup.

Another idea is to keep his bowels moving as much as possible during

this time so that he a) has an easy time going but also has as

many opportunities to get pooping rewards as possible. The more

successes he has, the faster this all will work I think. We are now

doing kidlax, natural calm, probiotics, prune juice and stewed

prunes mixed with yogurt, plus whole grains, fruit and limited

dairy.

Good luck with this and definitely let me know how it goes!

Cristina

> > > > >

> > > > > I wanted to bring this subject up due to I really feel

that

> > > > withholding

> > > > > diagnoses in many is wrong. Im sure there are those that

do

> > > this,

> > > > but I

> > > > > feel it is just about impossible to hold though if the

> muscle

> > > and

> > > > > nerves are working correctly. The body just wouldnt allow

> > > holding

> > > > to

> > > > > long in nature. Example is during sleep, a child couldnt

> > > > conciensly

> > > > > hold in sleep, infact we are so relaxed that during sleep

> > state

> > > > there

> > > > > couldnt be concience holding. Most of my sons stool

> movements

> > > are

> > > > > during sleep or first immediate waking! Stool pressure on

> the

> > > > > intestinal walls stimulates the muscle contractions! This

is

> > if

> > > > the

> > > > > nerve cells are working! If the nerve cells are

> > missing/damaged

> > > > than

> > > > > this would appear as holding to some, but not the case. I

> just

> > > > wonder

> > > > > with many being diagnosed with this withholding theory how

> > many

> > > > have

> > > > > had the motility/nerve cell testing? And then still

> diagnosed

> > > with

> > > > > withholding? Jennie<><

> > > > >

> > > >

> > >

> >

>

November 5, 2008

Another oil that might be worth trying is flax oil.

>

> From: deanna gentry <dkg116yahoo (DOT) com>

> Subject: Re: Withholding thoughts!!

> To: miralax@yahoogroups .com

> Date: Sunday, November 2, 2008, 2:24 PM

>

> Cody has had the motility/nerve cell testing, his colon has been

stretched out so far that until he is extremely full, then he cannot

feel anything. The test was referred to as the " balloon test " . We

(my husband and I) believe it started when he was being potty

trained, he didn't want to Stop playing and go to the bathroom, we

were always catching him holding it. Then that would cause

constipation, then it hurt, then he would hold it more so then he

would be constipated, etc...this continued for years, now he is

stretched out. It may or may not be reversible, due to his age.

Right now were are using the benefiber 3 times daily and the mineral

oil 1 spoon daily (at bedtime only). He is going a lot about every

other day (if he makes it 2 full days and still has not gone that

night I give him 2 spoons). I am going to continue using this

for six months (if there are no compications from the meds), then

slowly take him off.

> Deanna,

> Fort Worth, Texas

> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) ,

Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain

cedar & cats)(3/08), Eczema (since birth).

>

> From: Jennie <mykidshisgift@ yahoo.com>

> To: miralax@yahoogroups .com

> Sent: Sunday, November 2, 2008 8:43:49 AM

> Subject: Withholding thoughts!!

>

> I wanted to bring this subject up due to I really feel that

withholding

> diagnoses in many is wrong. Im sure there are those that do this,

but I

> feel it is just about impossible to hold though if the muscle and

> nerves are working correctly. The body just wouldnt allow holding

to

> long in nature. Example is during sleep, a child couldnt

conciensly

> hold in sleep, infact we are so relaxed that during sleep state

there

> couldnt be concience holding. Most of my sons stool movements are

> during sleep or first immediate waking! Stool pressure on the

> intestinal walls stimulates the muscle contractions! This is if

the

> nerve cells are working! If the nerve cells are missing/damaged

than

> this would appear as holding to some, but not the case. I just

wonder

> with many being diagnosed with this withholding theory how many

have

> had the motility/nerve cell testing? And then still diagnosed with

> withholding? Jennie<><

>

November 5, 2008

Thanks again Cristina. He initiates wearing underwear at times,

usually at least once per day he wants to put them on. He is pretty

successful holding in his pee for awhile, but he seems to having

trouble letting it go, at least into the potty. i think when you

hold it for awhile, sometimes he doesnt know how to let it out. for

example, we were at the park today, and i noticed him stand in such

a way that i thought he was going to poop. but after he was done, i

checked and he just peed. this was after hours of him being dry.

how do i get him to let it out??? i think if he learns how to relax

he will have a lot of success. i did get that poop book about 6

months ago and he seems to understand somewhat, b/c he has even used

the term " holding it in. " i have told him not to do this. he

thinks his belly is like a cement mixer truck, which he loves, that

pushes the poop and pee out when it gets full.

i will keep giving him rewards. i have to come up with the right

reward to get him to actually use the potty. i will keep thinking.

thanks again for your help. i appreciate it.

kelly

> > > > > >

> > > > > > I wanted to bring this subject up due to I really feel

> that

> > > > > withholding

> > > > > > diagnoses in many is wrong. Im sure there are those that

> do

> > > > this,

> > > > > but I

> > > > > > feel it is just about impossible to hold though if the

> > muscle

> > > > and

> > > > > > nerves are working correctly. The body just wouldnt

allow

> > > > holding

> > > > > to

> > > > > > long in nature. Example is during sleep, a child couldnt

> > > > > conciensly

> > > > > > hold in sleep, infact we are so relaxed that during

sleep

> > > state

> > > > > there

> > > > > > couldnt be concience holding. Most of my sons stool

> > movements

> > > > are

> > > > > > during sleep or first immediate waking! Stool pressure

on

> > the

> > > > > > intestinal walls stimulates the muscle contractions!

This

> is

> > > if

> > > > > the

> > > > > > nerve cells are working! If the nerve cells are

> > > missing/damaged

> > > > > than

> > > > > > this would appear as holding to some, but not the case.

I

> > just

> > > > > wonder

> > > > > > with many being diagnosed with this withholding theory

how

> > > many

> > > > > have

> > > > > > had the motility/nerve cell testing? And then still

> > diagnosed

> > > > with

> > > > > > withholding? Jennie<><

> > > > > >

> > > > >

> > > >

> > >

> >

>

November 5, 2008

Someone else told me about the olive oil also, I guess I should try it. Should I just give 1 spoon a day, like the mineral oil? Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Wednesday, November 5, 2008 7:31:59 PMSubject: Re: Withholding thoughts!!

Another oil that might be worth trying is flax oil.> > From: deanna gentry <dkg116yahoo (DOT) com>> Subject: Re: Withholding thoughts!!> To: miralax@yahoogroups .com> Date: Sunday, November 2, 2008, 2:24 PM> > > > > > > > Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was

referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre

Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth). > > > > > > > From: Jennie <mykidshisgift@ yahoo.com>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be

concience holding. Most of my sons stool movements are > during sleep or first immediate waking! Stool pressure on the > intestinal walls stimulates the muscle contractions! This is if the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

Flax oil is supposedly hard to digest. My kids became very irritable on it. I do know of many kids that it does work for. I wish it would of worked for us, it is so healthy.

Subject: Re: Re: Withholding thoughts!!To: miralax Date: Wednesday, November 5, 2008, 8:16 PM

Someone else told me about the olive oil also, I guess I should try it. Should I just give 1 spoon a day, like the mineral oil? Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Cristina <mommy605hotmail (DOT) com>To: miralax@yahoogroups .comSent: Wednesday, November 5, 2008 7:31:59 PMSubject: Re: Withholding thoughts!!

Another oil that might be worth trying is flax oil.> > From: deanna gentry <dkg116yahoo (DOT) com>> Subject: Re: Withholding thoughts!!> To: miralax@yahoogroups .com> Date: Sunday, November 2, 2008, 2:24 PM> > > > > > > > Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty

trained, he didn't want to Stop playing and go to the bathroom, we were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar &

cats)(3/08), Eczema (since birth). > > > > > > > From: Jennie <mykidshisgift@ yahoo.com>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be concience holding. Most of my sons stool movements are > during sleep or first

immediate waking! Stool pressure on the > intestinal walls stimulates the muscle contractions! This is if the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

Actually no, they were not treated, by the time we got the diagnoses (4 months after he got sick), he was well on his way to recovery, he still has not fully recovered, but almost. Right now my main concern is his constipation. I want it under control. I believe it is the root of the problem, then the miralax, then the allergies, but I really believed the lack of frequent bowel movements is the original culprit. No I have not tried OLE, I have heard about it. The only thing we did for the virus' was I started cooking with garlic, actually helped. It is now something we always put on our meat (least noticeable) now. Where do you reccommend me getting the OLE from? I am going to start him on olive oil every night vs mineral oil, I'm just waiting for him to "go" before I change anything. Really all we are doing now is:

Probiotic (Align) 1 daily.

Mineral oil 1 tsp 1x daily at bedtime

Benefiber 3x daily

Spring Water, we have even bought an ice maker to use to make his ice

I would really like to hear from anyone who has used olive oil as an intestinal lubricant and which brand is best. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

To: miralax Sent: Wednesday, November 5, 2008 6:38:53 PMSubject: Re: Re: Withholding thoughts!!

EGD?? Honestly I dont know about your sons type of biopsies! I found out when our new gastro said our son needed biopsy and I told him about him already having one a couple of years earlier, he said this was different. Apparently these ones are deeper into the intestinal wall and now he is going back to a surgeon gastro that is going even deeper...uuugh! Hopefully this is what your son already had done, you can askthe gastro! Our son also has had uppper and lower scope and he has issues with his esophogus! Apparently the balloon is an alternative test also to test the contractions andIm guessing maybe nerve ability also! You know we suspected the guillian barre withour son just after his vaccine reaction. In reading your sons diagnoses it seems that he is really struggling with viral issues, could most likely be his gi issues. Seems viral/bacteria issues can really mess with the gi! Has he been treated for the viral issues? Beings there is

no scripts to deal with the viral have you considered or tried natural like OLE etc? We really feel our sons viral symptoms got under control with these methods. Jennie<><

From: deanna gentry <dkg116yahoo (DOT) com>Subject: Re: Re: Withholding thoughts!!To: miralax@yahoogroups .comDate: Wednesday, November 5, 2008, 11:36 AM

You know, he had a colonoscopy in February, just weeks after the balloon test. They did biopsies, would that biopsy include nerve cell? They did a EGD at the same time and did biopsies of the upper, he had biopsies done throughout his gi tract. Last month, he had another EGD, no colonoscopy. This was done due to his EE, he will now have an EGD every 3 months until he gets better. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).

From: Jennie <mykidshisgift@ yahoo.com>To: miralax@yahoogroups .comSent: Sunday, November 2, 2008 3:12:14 PMSubject: Re: Withholding thoughts!!

Did he have the biopsy for nerve cells or just the balloon? I have read about the balloon test, that is for muscle contractions. So your son didnt test negative for the test? Mega colon also makes sense on the holding thought, takes lots of extra stool to stimulate the contractions. Can take days to move verses daily as you said if it doesnt harden first! Jennie<><>> Cody has had the motility/nerve cell testing, his colon has been stretched out so far that until he is extremely full, then he cannot feel anything. The test was referred to as the "balloon test". We (my husband and I) believe it started when he was being potty trained, he didn't want to Stop playing and go to the bathroom, we

were always catching him holding it. Then that would cause constipation, then it hurt, then he would hold it more so then he would be constipated, etc...this continued for years, now he is stretched out. It may or may not be reversible, due to his age. Right now were are using the benefiber 3 times daily and the mineral oil 1 spoon daily (at bedtime only). He is going a lot about every other day (if he makes it 2 full days and still has not gone that night I give him 2 spoons). I am going to continue using this for six months (if there are no compications from the meds), then slowly take him off. > Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08) , Epstein Barr Virus-Mono(6/ 08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth). > > > > >

____________ _________ _________ __> From: Jennie <mykidshisgift@ ...>> To: miralax@yahoogroups .com> Sent: Sunday, November 2, 2008 8:43:49 AM> Subject: Withholding thoughts!!> > > I wanted to bring this subject up due to I really feel that withholding > diagnoses in many is wrong. Im sure there are those that do this, but I > feel it is just about impossible to hold though if the muscle and > nerves are working correctly. The body just wouldnt allow holding to > long in nature. Example is during sleep, a child couldnt conciensly > hold in sleep, infact we are so relaxed that during sleep state there > couldnt be concience holding. Most of my sons stool movements are > during sleep or first immediate waking!

Stool pressure on the > intestinal walls stimulates the muscle contractions! This is if the > nerve cells are working! If the nerve cells are missing/damaged than > this would appear as holding to some, but not the case. I just wonder > with many being diagnosed with this withholding theory how many have > had the motility/nerve cell testing? And then still diagnosed with > withholding? Jennie<><>

November 5, 2008

EGD=endoscopy Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE (2/08), Guilliam Barre Syndrome(3/08), Epstein Barr Virus-Mono(6/08), Environmental Allergies (mountain cedar & cats)(3/08), Eczema (since birth).