NEW- constipation issues in Hirschsprung's toddler....suggestions needed...help

[Guest guest]

Hi,

My story is long so I will try and condense it as much as possible. My almost

two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He

had is last surgery to re-connect and remove 'bad' portion in 5/09.

From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from

brutual diaper rash and had to dilate (tight anus) and had major middle of night

gas issues BUT that entire time he was pooping 8-10x a day and by a year post

surgery (5/10) down to 3-4x per day.

Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him

out w/ irrigations. Have been trying senna (as per surgeon-who is the leading

HD expert in the world) in different amounts...

His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per day

EVERY single day. Has never had a hard or formed poop...it is always oatmeal

consistency.

So now we are on week 4 of no poop. Various increases in senna not working.

Was thinking about trying miralax BUT really not wanting too and surgeon is not

on board w/ this type of lax for HD kids.

here is what we have tried.

~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is

still BF'ing 2x per day.

~dairy free- didn't change a thing-tried it several times for 2-4 weeks at clip

~we have been on probiotic since month one of life

~just started prebiotic

~multi-

~omega's

~flax sees EVERY day 1-2 tbs

he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear

juice, cooking w/ more oil (olive, coconut)

he has been tested for celiac, food allergies, and many many many other GI

'stuff' and everything came back fine

I don't know if anyone has anything else to offer us. With HD constipation is

an issue`, but confusing for us because we were pooping so much for so long.

IF you got this far THANKS so much for reading.

[Guest guest]

Hi .....

I'm so sorry to hear you are going through all of this. I'm sure it has been a very long road for you.

You will get some great advice on this site....I just think you need to wait a few days for people to get over all of the Holiday hub bub.....

My daughter just turned 5......we have been dealing with constipation since birth. Our genetics doctor wanted my daughter tested for Hirschsprungs, but we didn't feel at the age of 2, that is what she had.

We have tried many things also....but so far, only 2 things have worked for us. The 1st was a product called Fruit-eze....I gave that to my daughter with everything....and it took about 2 weeks, and she was going every single day.....the only bad part....she tired of eating it. It's a thick jelly like product of prunes, dates and raisins. But it worked.....

The second thing that is working for us right now is Psyllium husks powder. I give it to her 2x a day.....once in the morning, and once before dinner. It took 4-5 weeks to kick in, but we are up to 25 days straight of pooping....it's amazing. I'm not sure if her body will get used to it or not, but for right now....it's working.

I hope you get some answers soon....I know how hard it is, and with Hirschsprungs....even harder....

If you have any questions...I'll try to answer the best I can....

Subject: NEW- constipation issues in Hirschsprung's toddler....suggestions needed...helpTo: miralax Date: Saturday, November 27, 2010, 7:25 AM

Hi,My story is long so I will try and condense it as much as possible. My almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He had is last surgery to re-connect and remove 'bad' portion in 5/09.From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from brutual diaper rash and had to dilate (tight anus) and had major middle of night gas issues BUT that entire time he was pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per day.Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him out w/ irrigations. Have been trying senna (as per surgeon-who is the leading HD expert in the world) in different amounts...His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per day EVERY single day. Has never had a hard or formed poop...it is always oatmeal consistency.So now we are on week 4 of no poop. Various increases in senna

not working. Was thinking about trying miralax BUT really not wanting too and surgeon is not on board w/ this type of lax for HD kids.here is what we have tried.~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is still BF'ing 2x per day.~dairy free- didn't change a thing-tried it several times for 2-4 weeks at clip~we have been on probiotic since month one of life~just started prebiotic~multi-~omega's~flax sees EVERY day 1-2 tbshe gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear juice, cooking w/ more oil (olive, coconut)he has been tested for celiac, food allergies, and many many many other GI 'stuff' and everything came back fineI don't know if anyone has anything else to offer us. With HD constipation is an issue`, but confusing for us because we were pooping so much for so long.IF you got this far THANKS so much for

reading.

[Guest guest]

What does your doctor say about Lactulose? This was a predecessor to Miralax, that is not commonly used any more due to the preference Miralax is given.

I can barely spell Hirschsprung's, so I read a little bit on it.

Has a neurologist been involved at all, or just a gastroenterologist? Have you looked for further nerve damage than just the intestines? (hopelfully that isn't the case)

We've used both Miralax and Lactulose, and found them both to be effective. My son used Miralax for 18 months without any adverse reactions. We're trying Lactulose right now. I'm not sure which one I prefer, but what works best for my son isn't necessarily the best route for anyone else.

Jack

From: miralax [mailto:miralax ] On Behalf Of Sent: Saturday, November 27, 2010 10:25 AMTo: miralax Subject: NEW- constipation issues in Hirschsprung's toddler....suggestions needed...help

Hi,My story is long so I will try and condense it as much as possible. My almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He had is last surgery to re-connect and remove 'bad' portion in 5/09.From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from brutual diaper rash and had to dilate (tight anus) and had major middle of night gas issues BUT that entire time he was pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per day.Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him out w/ irrigations. Have been trying senna (as per surgeon-who is the leading HD expert in the world) in different amounts...His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per day EVERY single day. Has never had a hard or formed poop...it is always oatmeal consistency.So now we are on week 4 of no poop. Various increases in senna not working. Was thinking about trying miralax BUT really not wanting too and surgeon is not on board w/ this type of lax for HD kids.here is what we have tried.~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is still BF'ing 2x per day.~dairy free- didn't change a thing-tried it several times for 2-4 weeks at clip~we have been on probiotic since month one of life~just started prebiotic~multi-~omega's~flax sees EVERY day 1-2 tbshe gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear juice, cooking w/ more oil (olive, coconut)he has been tested for celiac, food allergies, and many many many other GI 'stuff' and everything came back fineI don't know if anyone has anything else to offer us. With HD constipation is an issue`, but confusing for us because we were pooping so much for so long.IF you got this far THANKS so much for reading.

[Guest guest]

Thanks and Jack!

- I have heard about fruit-eeze. I have made my own version of that same

thing..which didn't seem to help! He is such a finicky eater and I am afraid I

will buy it and it will just go un-used. I have been thinking about doing

psyliium, but I know that stuff is hard to get down....maybe sprinkled on his

oatmeal?????

Jack- no neurologist on board. It is interesting that you asked that question

though bec. my 4 yr old daughter was recently diagnosed w/ a nighttime seizure

disorder so she does see a neuro.

My HD son has not had a need for a neuro he has hit all his milestones perfectly

and as of right now it is only this 'constipation' thing we are dealing with. I

have heard of lactulose but have never tried it. We are really working more w/

our surgeon that w/ a gastro, and he only wants him on a stimulant lax to keep

the intesting working and not letting it get slow/lazy. he is really opposed to

all other lax so we are hesitiant to go against his orders.

My son did start pooping again this week....w/ 1 strip of senna on board, so we

will see how it goes. I am just afraid that this is going to be a new pattern

for us of pooping well and then stopping all together and I feel like something

else might be going on.

again THANKS so much....I welcome any other thoughts/suggestions!

>

> What does your doctor say about Lactulose? This was a predecessor to

> Miralax, that is not commonly used any more due to the preference Miralax is

> given.

>

> I can barely spell Hirschsprung's, so I read a little bit on it.

>

> Has a neurologist been involved at all, or just a gastroenterologist? Have

> you looked for further nerve damage than just the intestines? (hopelfully

> that isn't the case)

>

> We've used both Miralax and Lactulose, and found them both to be effective.

> My son used Miralax for 18 months without any adverse reactions. We're

> trying Lactulose right now. I'm not sure which one I prefer, but what works

> best for my son isn't necessarily the best route for anyone else.

>

> Jack

>

>

>

> _____

>

> From: miralax [mailto:miralax ] On Behalf Of

>

> Sent: Saturday, November 27, 2010 10:25 AM

> To: miralax

> Subject: NEW- constipation issues in Hirschsprung's

> toddler....suggestions needed...help

>

>

>

>

> Hi,

> My story is long so I will try and condense it as much as possible. My

> almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his

> colon. He had is last surgery to re-connect and remove 'bad' portion in

> 5/09.

>

> From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from

> brutual diaper rash and had to dilate (tight anus) and had major middle of

> night gas issues BUT that entire time he was pooping 8-10x a day and by a

> year post surgery (5/10) down to 3-4x per day.

>

> Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean

> him out w/ irrigations. Have been trying senna (as per surgeon-who is the

> leading HD expert in the world) in different amounts...

> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per

> day EVERY single day. Has never had a hard or formed poop...it is always

> oatmeal consistency.

>

> So now we are on week 4 of no poop. Various increases in senna not working.

> Was thinking about trying miralax BUT really not wanting too and surgeon is

> not on board w/ this type of lax for HD kids.

>

> here is what we have tried.

> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is

> still BF'ing 2x per day.

> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at

> clip

> ~we have been on probiotic since month one of life

> ~just started prebiotic

> ~multi-

> ~omega's

> ~flax sees EVERY day 1-2 tbs

>

> he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear

> juice, cooking w/ more oil (olive, coconut)

>

> he has been tested for celiac, food allergies, and many many many other GI

> 'stuff' and everything came back fine

>

> I don't know if anyone has anything else to offer us. With HD constipation

> is an issue`, but confusing for us because we were pooping so much for so

> long.

>

> IF you got this far THANKS so much for reading.

>

>

[Guest guest]

You're welcome .......

Just FYI....The Psyllium goes down very easy for my daughter mixed with applesauce. I tried it in oatmeal, and it really thickened the oatmeal. I'm sticking with the applesauce...so far so good, we are up to 31-32 days straight of pooping.

I hope things start to work for you.

Subject: Re: NEW- constipation issues in Hirschsprung's toddler....suggestions needed...helpTo: miralax Date: Saturday, December 4, 2010, 12:09 PM

Thanks and Jack!- I have heard about fruit-eeze. I have made my own version of that same thing..which didn't seem to help! He is such a finicky eater and I am afraid I will buy it and it will just go un-used. I have been thinking about doing psyliium, but I know that stuff is hard to get down....maybe sprinkled on his oatmeal?????Jack- no neurologist on board. It is interesting that you asked that question though bec. my 4 yr old daughter was recently diagnosed w/ a nighttime seizure disorder so she does see a neuro.My HD son has not had a need for a neuro he has hit all his milestones perfectly and as of right now it is only this 'constipation' thing we are dealing with. I have heard of lactulose but have never tried it. We are really working more w/ our surgeon that w/ a gastro, and he only wants him on a stimulant lax to keep the intesting working and not letting it get slow/lazy. he is really opposed to all

other lax so we are hesitiant to go against his orders.My son did start pooping again this week....w/ 1 strip of senna on board, so we will see how it goes. I am just afraid that this is going to be a new pattern for us of pooping well and then stopping all together and I feel like something else might be going on.again THANKS so much....I welcome any other thoughts/suggestions!>> What does your doctor say about Lactulose? This was a predecessor to> Miralax, that is not commonly used any more due to the preference Miralax is> given.> > I can barely spell Hirschsprung's, so I read a little bit on it.> > Has a neurologist been involved at all, or

just a gastroenterologist? Have> you looked for further nerve damage than just the intestines? (hopelfully> that isn't the case)> > We've used both Miralax and Lactulose, and found them both to be effective.> My son used Miralax for 18 months without any adverse reactions. We're> trying Lactulose right now. I'm not sure which one I prefer, but what works> best for my son isn't necessarily the best route for anyone else.> > Jack> > > > _____ > > From: miralax [mailto:miralax ] On Behalf Of> >

Sent: Saturday, November 27, 2010 10:25 AM> To: miralax > Subject: NEW- constipation issues in Hirschsprung's> toddler....suggestions needed...help> > > > > Hi,> My story is long so I will try and condense it as much as possible. My> almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his> colon. He had is last surgery to re-connect and remove 'bad' portion in> 5/09.> > From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from> brutual diaper rash and had to dilate (tight anus) and had major middle of> night gas issues BUT that entire time he was pooping 8-10x a day and by a> year post surgery (5/10) down to 3-4x per

day.> > Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean> him out w/ irrigations. Have been trying senna (as per surgeon-who is the> leading HD expert in the world) in different amounts...> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per> day EVERY single day. Has never had a hard or formed poop...it is always> oatmeal consistency.> > So now we are on week 4 of no poop. Various increases in senna not working.> Was thinking about trying miralax BUT really not wanting too and surgeon is> not on board w/ this type of lax for HD kids.> > here is what we have tried.> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is> still BF'ing 2x per day.> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at> clip> ~we have been on probiotic since

month one of life> ~just started prebiotic> ~multi-> ~omega's> ~flax sees EVERY day 1-2 tbs> > he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear> juice, cooking w/ more oil (olive, coconut)> > he has been tested for celiac, food allergies, and many many many other GI> 'stuff' and everything came back fine> > I don't know if anyone has anything else to offer us. With HD constipation> is an issue`, but confusing for us because we were pooping so much for so> long.> > IF you got this far THANKS so much for reading.> >

[Guest guest]

Glad to hear that he is hitting the milestones on time.

Has anyone discussed Enemeez ? we use them and they stimulate the peristalsis. See what the doc says about that. It is not taken orally...

From: miralax [mailto:miralax ] On Behalf Of Sent: Saturday, December 04, 2010 3:09 PMTo: miralax Subject: Re: NEW- constipation issues in Hirschsprung's toddler....suggestions needed...help

Thanks and Jack!- I have heard about fruit-eeze. I have made my own version of that same thing..which didn't seem to help! He is such a finicky eater and I am afraid I will buy it and it will just go un-used. I have been thinking about doing psyliium, but I know that stuff is hard to get down....maybe sprinkled on his oatmeal?????Jack- no neurologist on board. It is interesting that you asked that question though bec. my 4 yr old daughter was recently diagnosed w/ a nighttime seizure disorder so she does see a neuro.My HD son has not had a need for a neuro he has hit all his milestones perfectly and as of right now it is only this 'constipation' thing we are dealing with. I have heard of lactulose but have never tried it. We are really working more w/ our surgeon that w/ a gastro, and he only wants him on a stimulant lax to keep the intesting working and not letting it get slow/lazy. he is really opposed to all other lax so we are hesitiant to go against his orders.My son did start pooping again this week....w/ 1 strip of senna on board, so we will see how it goes. I am just afraid that this is going to be a new pattern for us of pooping well and then stopping all together and I feel like something else might be going on.again THANKS so much....I welcome any other thoughts/suggestions!>> What does your doctor say about Lactulose? This was a predecessor to> Miralax, that is not commonly used any more due to the preference Miralax is> given.> > I can barely spell Hirschsprung's, so I read a little bit on it.> > Has a neurologist been involved at all, or just a gastroenterologist? Have> you looked for further nerve damage than just the intestines? (hopelfully> that isn't the case)> > We've used both Miralax and Lactulose, and found them both to be effective.> My son used Miralax for 18 months without any adverse reactions. We're> trying Lactulose right now. I'm not sure which one I prefer, but what works> best for my son isn't necessarily the best route for anyone else.> > Jack> > > > _____ > > From: miralax [mailto:miralax ] On Behalf Of> > Sent: Saturday, November 27, 2010 10:25 AM> To: miralax > Subject: NEW- constipation issues in Hirschsprung's> toddler....suggestions needed...help> > > > > Hi,> My story is long so I will try and condense it as much as possible. My> almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his> colon. He had is last surgery to re-connect and remove 'bad' portion in> 5/09.> > From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from> brutual diaper rash and had to dilate (tight anus) and had major middle of> night gas issues BUT that entire time he was pooping 8-10x a day and by a> year post surgery (5/10) down to 3-4x per day.> > Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean> him out w/ irrigations. Have been trying senna (as per surgeon-who is the> leading HD expert in the world) in different amounts...> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per> day EVERY single day. Has never had a hard or formed poop...it is always> oatmeal consistency.> > So now we are on week 4 of no poop. Various increases in senna not working.> Was thinking about trying miralax BUT really not wanting too and surgeon is> not on board w/ this type of lax for HD kids.> > here is what we have tried.> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is> still BF'ing 2x per day.> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at> clip> ~we have been on probiotic since month one of life> ~just started prebiotic> ~multi-> ~omega's> ~flax sees EVERY day 1-2 tbs> > he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear> juice, cooking w/ more oil (olive, coconut)> > he has been tested for celiac, food allergies, and many many many other GI> 'stuff' and everything came back fine> > I don't know if anyone has anything else to offer us. With HD constipation> is an issue`, but confusing for us because we were pooping so much for so> long.> > IF you got this far THANKS so much for reading.> >

[Guest guest]

sorry so long!

Hi , I havent been here for a while but your title in my email caught my

attention. My son also has HD, diagnosed at 9yrs and at this point has lost a

total of 3 1/2 feet and with an iliostomy. Many redo's etc. Has been very

difficult these last couple of years but moving forward. I wanted to mention

that 1st of all I dont think miralax is safe for anyone, I believe it damages

the nerve cells in there and therefor requiring more and more. Why did your

surgeon tell you he doesnt support miralax and HD? He is correct and so glad he

told you this. We learned the hard way. Miralax as you may already know is PEG,

this includes golytly etc. My son used to be on peg befor his HD diagnoses and

he just was getting worse and worse. Severly ill etc. During a hospital stay for

another round of biopsies my son ended up in ICU due to his heart having

difficulties. We discovered than that when PEG sits in the bowels to long that

potassium levels can dramaticaly drop and this has a direct affect on the heart.

You can literally have heart failure. Befor that hospital stay I refused miralax

due to learning what it does and seen the affects with my son so I had weened

him off. But they told me the wouldnt use miralax and used something else.

Seeing how horrid he was looking and feeling the nurse left the jug of what they

was using through tubing to clean him out. I was horrified when I seen the words

PEG on the bottle(golytly) and was very upset and felt betrayed by the doctors.

I was so worried about my son as he was in bad shape, white/pale as a ghost,

severe severe bloating(this is a big clue) etc etc. Anyways, I wont go into all

the details from that stay but PLEASE dont use miralax. Even without HD and if a

child is not having movements while on it this heart danger is there, especially

if it sits in there and not move through. I remember reading FDA reports I

believe it was Jeanie that posted of heart failure with miralax usage. I wanted

to also ask you if your son vaccinates? We directly leanked our sons HD

diagnoses to vaccines. Vaccines directly target the intestines and can cause

nerve damage. Once there is nerve damage, the body over a short time absorbs

those nerves and then it appears as though they was never there(sounds just like

HD). You wont get any medical doc to ever admit that but we are 100% sure. I

studied and researched this to death. Also those that are born with HD have what

is called an over abundance of mast cells(to many/much larger). Normally these

are a good thing for the body. They counter allergic reactions, allergies,

bacteria etc. But when you have to many or to large(commen in HD) they well

actually do more harm than good and cause more damage on the nerves. So please

be leary of vaccines. PEG is adding salt to the wounds. There are studies that

show peg binds nerve endings, this was studies on nerve damage. Imagine what it

may be doing to nerve endings in human intestines. If they are binded then the

body well naturally absorb them and then no longer there etc. I suspect this is

also an affect of good nerve endings in the intestines with PEG. Befor our sons

iliostomy what did help with him was first got him off miralax, 2nd used natural

intestinal healers. You mentioned probiotics etc but most of our children need

natural anti fungals, anti virals etc. Many dont realize that when a person gets

a virus or bacteria issue in the body, that many get Peristalsis and this may be

all there constipation is. Once the viral/fungal/bacteria is cleared up many

start stooling again. Many things contribute to the fungal and viral etc. And as

this is already turning into a book, I wont go into that write now. Hopefully

others can jump in on it or if interested I can write more later. I well end

here and sorry so long. I pray for your little guy to do well. Jennie<><

>

> Hi,

> My story is long so I will try and condense it as much as possible. My almost

two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He

had is last surgery to re-connect and remove 'bad' portion in 5/09.

>

> From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from

brutual diaper rash and had to dilate (tight anus) and had major middle of night

gas issues BUT that entire time he was pooping 8-10x a day and by a year post

surgery (5/10) down to 3-4x per day.

>

> Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him

out w/ irrigations. Have been trying senna (as per surgeon-who is the leading

HD expert in the world) in different amounts...

> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per

day EVERY single day. Has never had a hard or formed poop...it is always

oatmeal consistency.

>

> So now we are on week 4 of no poop. Various increases in senna not working.

Was thinking about trying miralax BUT really not wanting too and surgeon is not

on board w/ this type of lax for HD kids.

>

> here is what we have tried.

> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is

still BF'ing 2x per day.

> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at

clip

> ~we have been on probiotic since month one of life

> ~just started prebiotic

> ~multi-

> ~omega's

> ~flax sees EVERY day 1-2 tbs

>

> he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear

juice, cooking w/ more oil (olive, coconut)

>

> he has been tested for celiac, food allergies, and many many many other GI

'stuff' and everything came back fine

>

> I don't know if anyone has anything else to offer us. With HD constipation is

an issue`, but confusing for us because we were pooping so much for so long.

>

> IF you got this far THANKS so much for reading.

>

>

[Guest guest]

-What kind of Celiac testing did you do? Blood work often gives false-negatives. See if you can find someone to do saliva. Also, perhaps add magnesium? Kids Calm or Natural Calm seems to get a lot of thumbs-up here. Sounds like you have a level-headed doc, great job! Will you share his name/location? Tracie sorry so long!Hi , I havent been here for a while but your title in my email caught my attention. My son also has HD, diagnosed at 9yrs and at this point has lost a total of 3 1/2 feet and with an iliostomy. Many redo's etc. Has been very difficult these last couple of years but moving forward. I wanted to mention that 1st of all I dont think miralax is safe for anyone, I believe it damages the nerve cells in there and therefor requiring more and more. Why did your surgeon tell you he doesnt support miralax and HD? He is correct and so glad he told you this. We learned the hard way. Miralax as you may already know is PEG, this includes golytly etc. My son used to be on peg befor his HD diagnoses and he just was getting worse and worse. Severly ill etc. During a hospital stay for another round of biopsies my son ended up in ICU due to his heart having difficulties. We discovered than that when PEG sits in the bowels to long that potassium levels can dramaticaly drop and this has a direct affect on the heart. You can literally have heart failure. Befor that hospital stay I refused miralax due to learning what it does and seen the affects with my son so I had weened him off. But they told me the wouldnt use miralax and used something else. Seeing how horrid he was looking and feeling the nurse left the jug of what they was using through tubing to clean him out. I was horrified when I seen the words PEG on the bottle(golytly) and was very upset and felt betrayed by the doctors. I was so worried about my son as he was in bad shape, white/pale as a ghost, severe severe bloating(this is a big clue) etc etc. Anyways, I wont go into all the details from that stay but PLEASE dont use miralax. Even without HD and if a child is not having movements while on it this heart danger is there, especially if it sits in there and not move through. I remember reading FDA reports I believe it was Jeanie that posted of heart failure with miralax usage. I wanted to also ask you if your son vaccinates? We directly leanked our sons HD diagnoses to vaccines. Vaccines directly target the intestines and can cause nerve damage. Once there is nerve damage, the body over a short time absorbs those nerves and then it appears as though they was never there(sounds just like HD). You wont get any medical doc to ever admit that but we are 100% sure. I studied and researched this to death. Also those that are born with HD have what is called an over abundance of mast cells(to many/much larger). Normally these are a good thing for the body. They counter allergic reactions, allergies, bacteria etc. But when you have to many or to large(commen in HD) they well actually do more harm than good and cause more damage on the nerves. So please be leary of vaccines. PEG is adding salt to the wounds. There are studies that show peg binds nerve endings, this was studies on nerve damage. Imagine what it may be doing to nerve endings in human intestines. If they are binded then the body well naturally absorb them and then no longer there etc. I suspect this is also an affect of good nerve endings in the intestines with PEG. Befor our sons iliostomy what did help with him was first got him off miralax, 2nd used natural intestinal healers. You mentioned probiotics etc but most of our children need natural anti fungals, anti virals etc. Many dont realize that when a person gets a virus or bacteria issue in the body, that many get Peristalsis and this may be all there constipation is. Once the viral/fungal/bacteria is cleared up many start stooling again. Many things contribute to the fungal and viral etc. And as this is already turning into a book, I wont go into that write now. Hopefully others can jump in on it or if interested I can write more later. I well end here and sorry so long. I pray for your little guy to do well. Jennie<><>> Hi,> My story is long so I will try and condense it as much as possible. My almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He had is last surgery to re-connect and remove 'bad' portion in 5/09.> > From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from brutual diaper rash and had to dilate (tight anus) and had major middle of night gas issues BUT that entire time he was pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per day.> > Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him out w/ irrigations. Have been trying senna (as per surgeon-who is the leading HD expert in the world) in different amounts...> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per day EVERY single day. Has never had a hard or formed poop...it is always oatmeal consistency.> > So now we are on week 4 of no poop. Various increases in senna not working. Was thinking about trying miralax BUT really not wanting too and surgeon is not on board w/ this type of lax for HD kids.> > here is what we have tried.> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is still BF'ing 2x per day.> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at clip> ~we have been on probiotic since month one of life> ~just started prebiotic> ~multi-> ~omega's> ~flax sees EVERY day 1-2 tbs> > he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear juice, cooking w/ more oil (olive, coconut)> > he has been tested for celiac, food allergies, and many many many other GI 'stuff' and everything came back fine> > I don't know if anyone has anything else to offer us. With HD constipation is an issue`, but confusing for us because we were pooping so much for so long.> > IF you got this far THANKS so much for reading.> >

[Guest guest]

Hey Jenni--just a question I  hope you don't mind my asking--my son has had issues with constipation etc...  since he was about 14 months and now he just turned 7--took him off the miralax about 4 weeks ago and have been using magnesium (Natural Calm) and trying to figure out what else to do--I was interested in your story because you said your son was diagnosed at 9 with HD---my son had 2 biopsies at 3--one was inconclusive and the other was negative.  Did your son have multiple biopsies? why was he 9 before he was diagnosed? One of our former GI's told its nigh unto impossible for a child to be diagnosed later in life because it's almost always caught at birth but you're the 2nd person I've heard of that has found out when the child was older... I'm asking because my son has had so many problems and for so long and at first they immediately suspected HD because of his symptoms but then after they got the neg. result they said it's just constipation... hope you don't mind my asking.. oh, and thanks for your info on the miralax and heart...

samantha

 

sorry so long!

Hi , I havent been here for a while but your title in my email caught my attention. My son also has HD, diagnosed at 9yrs and at this point has lost a total of 3 1/2 feet and with an iliostomy. Many redo's etc. Has been very difficult these last couple of years but moving forward. I wanted to mention that 1st of all I dont think miralax is safe for anyone, I believe it damages the nerve cells in there and therefor requiring more and more. Why did your surgeon tell you he doesnt support miralax and HD? He is correct and so glad he told you this. We learned the hard way. Miralax as you may already know is PEG, this includes golytly etc. My son used to be on peg befor his HD diagnoses and he just was getting worse and worse. Severly ill etc. During a hospital stay for another round of biopsies my son ended up in ICU due to his heart having difficulties. We discovered than that when PEG sits in the bowels to long that potassium levels can dramaticaly drop and this has a direct affect on the heart. You can literally have heart failure. Befor that hospital stay I refused miralax due to learning what it does and seen the affects with my son so I had weened him off. But they told me the wouldnt use miralax and used something else. Seeing how horrid he was looking and feeling the nurse left the jug of what they was using through tubing to clean him out. I was horrified when I seen the words PEG on the bottle(golytly) and was very upset and felt betrayed by the doctors. I was so worried about my son as he was in bad shape, white/pale as a ghost, severe severe bloating(this is a big clue) etc etc. Anyways, I wont go into all the details from that stay but PLEASE dont use miralax. Even without HD and if a child is not having movements while on it this heart danger is there, especially if it sits in there and not move through. I remember reading FDA reports I believe it was Jeanie that posted of heart failure with miralax usage. I wanted to also ask you if your son vaccinates? We directly leanked our sons HD diagnoses to vaccines. Vaccines directly target the intestines and can cause nerve damage. Once there is nerve damage, the body over a short time absorbs those nerves and then it appears as though they was never there(sounds just like HD). You wont get any medical doc to ever admit that but we are 100% sure. I studied and researched this to death. Also those that are born with HD have what is called an over abundance of mast cells(to many/much larger). Normally these are a good thing for the body. They counter allergic reactions, allergies, bacteria etc. But when you have to many or to large(commen in HD) they well actually do more harm than good and cause more damage on the nerves. So please be leary of vaccines. PEG is adding salt to the wounds. There are studies that show peg binds nerve endings, this was studies on nerve damage. Imagine what it may be doing to nerve endings in human intestines. If they are binded then the body well naturally absorb them and then no longer there etc. I suspect this is also an affect of good nerve endings in the intestines with PEG. Befor our sons iliostomy what did help with him was first got him off miralax, 2nd used natural intestinal healers. You mentioned probiotics etc but most of our children need natural anti fungals, anti virals etc. Many dont realize that when a person gets a virus or bacteria issue in the body, that many get Peristalsis and this may be all there constipation is. Once the viral/fungal/bacteria is cleared up many start stooling again. Many things contribute to the fungal and viral etc. And as this is already turning into a book, I wont go into that write now. Hopefully others can jump in on it or if interested I can write more later. I well end here and sorry so long. I pray for your little guy to do well. Jennie<><

>

> Hi,

> My story is long so I will try and condense it as much as possible. My almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his colon. He had is last surgery to re-connect and remove 'bad' portion in 5/09.

>

> From 5/09-7/10 he pooped wonderfully...actually too much. We suffered from brutual diaper rash and had to dilate (tight anus) and had major middle of night gas issues BUT that entire time he was pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per day.

>

> Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean him out w/ irrigations. Have been trying senna (as per surgeon-who is the leading HD expert in the world) in different amounts...

> His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x per day EVERY single day. Has never had a hard or formed poop...it is always oatmeal consistency.

>

> So now we are on week 4 of no poop. Various increases in senna not working. Was thinking about trying miralax BUT really not wanting too and surgeon is not on board w/ this type of lax for HD kids.

>

> here is what we have tried.

> ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he is still BF'ing 2x per day.

> ~dairy free- didn't change a thing-tried it several times for 2-4 weeks at clip

> ~we have been on probiotic since month one of life

> ~just started prebiotic

> ~multi-

> ~omega's

> ~flax sees EVERY day 1-2 tbs

>

> he gets approx 5g of fiber per meal. We've tried prunes, prune juice, pear juice, cooking w/ more oil (olive, coconut)

>

> he has been tested for celiac, food allergies, and many many many other GI 'stuff' and everything came back fine

>

> I don't know if anyone has anything else to offer us. With HD constipation is an issue`, but confusing for us because we were pooping so much for so long.

>

> IF you got this far THANKS so much for reading.

>

>

[Guest guest]

Thanks again everyone!

Jennie- we don't vaccinate, so no concerns there!!! He was born w/

HD...diagnosed at 26 hrs old.

What type of anti-funguls, anti virals do you suggest and what other intestinal

healers?

I think I mentioned we just started him on a prebiotic (as well as his

probiotic) and I am also thinking about starting florastor (anti yeast

probiotic). I have tried digestive enzymes but he won't take the ones I bought

(mix w/ juice= fizzy!!!).

I agree w/ you about these kids getting virus/bug and then it slows or shuts the

system down all together. I THINK that the first time he got sick (8 weeks no

poop, 3x enterocolitis) I MAY have given him a bit of lemonade I was drinking

(that I LATER learned was unpasturized). I cannot get it out of my head that

the juice is what caused this whole thing. Like I said he was pooping fine for

15 months post surgery and then STOPPED.

The dr. we deal w/ is surgeon named Dr. Levitt at Cincinatti Children's Hospital

(we actually live in NJ and traveld to him for our son's second surgery). He

specializes in HD. He does not recommend the osmotic laxatives because HD kids

'usually' have soft/runny stool and need the help w/ the contractions instead

hence senna...we also tried biscodyl once over the summer and it was a nightmare

of vomiting for hours and hours....poor little guy

My pediatrician is very holisitic so that is helpful as well.

THANKS AGAIN everyone!

> > >

> > > Hi,

> > > My story is long so I will try and condense it as much as possible. My

> > almost two year old was born w/ Hirschsprung's disease and lost 1/3 of his

> > colon. He had is last surgery to re-connect and remove 'bad' portion in

> > 5/09.

> > >

> > > From 5/09-7/10 he pooped wonderfully...actually too much. We suffered

> > from brutual diaper rash and had to dilate (tight anus) and had major middle

> > of night gas issues BUT that entire time he was pooping 8-10x a day and by a

> > year post surgery (5/10) down to 3-4x per day.

> > >

> > > Then in 7/10 he stopped pooping all together for 8 weeks. We had to clean

> > him out w/ irrigations. Have been trying senna (as per surgeon-who is the

> > leading HD expert in the world) in different amounts...

> > > His system 'woke' up in 9/10 and we were good for 6 weeks, pooping 3-4x

> > per day EVERY single day. Has never had a hard or formed poop...it is always

> > oatmeal consistency.

> > >

> > > So now we are on week 4 of no poop. Various increases in senna not

> > working. Was thinking about trying miralax BUT really not wanting too and

> > surgeon is not on board w/ this type of lax for HD kids.

> > >

> > > here is what we have tried.

> > > ~exclusively breast fed till 7 months- intro'd solids VERY slowly and he

> > is still BF'ing 2x per day.

> > > ~dairy free- didn't change a thing-tried it several times for 2-4 weeks

> > at clip

> > > ~we have been on probiotic since month one of life

> > > ~just started prebiotic

> > > ~multi-

> > > ~omega's

> > > ~flax sees EVERY day 1-2 tbs

> > >

> > > he gets approx 5g of fiber per meal. We've tried prunes, prune juice,

> > pear juice, cooking w/ more oil (olive, coconut)

> > >

> > > he has been tested for celiac, food allergies, and many many many other

> > GI 'stuff' and everything came back fine

> > >

> > > I don't know if anyone has anything else to offer us. With HD

> > constipation is an issue`, but confusing for us because we were pooping so

> > much for so long.

> > >

> > > IF you got this far THANKS so much for reading.

> > >

> > >

> >

> >

> >

>

[Guest guest]

Tracie- THANKS. I am thinking about starting mag. Just talked to my ped about

it to find out dosing for my 2 yr old. I had started him on a calc/mag

supplement RIGHT before this last episode of 'constipation' started and of

course that gets me wondering if the supp had anything to do w/ the stopping of

the poop!!!!!!!

The celiac testing was done a bunch....I know we had basic allergy testing done

and also an ige and/or iga....a few of the 'ig' tests. I would have to go and

find the copy of lab work to see exactly what tests they were. I know it was

more than one test. how reliable are the saliva tests???

Thanks,

> >

> > Hi,

> > My story is long so I will try and condense it as much as possible.

> My almost two year old was born w/ Hirschsprung's disease and lost 1/3

> of his colon. He had is last surgery to re-connect and remove 'bad'

> portion in 5/09.

> >

> > From 5/09-7/10 he pooped wonderfully...actually too much. We

> suffered from brutual diaper rash and had to dilate (tight anus) and

> had major middle of night gas issues BUT that entire time he was

> pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per

> day.

> >

> > Then in 7/10 he stopped pooping all together for 8 weeks. We had to

> clean him out w/ irrigations. Have been trying senna (as per surgeon-

> who is the leading HD expert in the world) in different amounts...

> > His system 'woke' up in 9/10 and we were good for 6 weeks, pooping

> 3-4x per day EVERY single day. Has never had a hard or formed

> poop...it is always oatmeal consistency.

> >

> > So now we are on week 4 of no poop. Various increases in senna not

> working. Was thinking about trying miralax BUT really not wanting too

> and surgeon is not on board w/ this type of lax for HD kids.

> >

> > here is what we have tried.

> > ~exclusively breast fed till 7 months- intro'd solids VERY slowly

> and he is still BF'ing 2x per day.

> > ~dairy free- didn't change a thing-tried it several times for 2-4

> weeks at clip

> > ~we have been on probiotic since month one of life

> > ~just started prebiotic

> > ~multi-

> > ~omega's

> > ~flax sees EVERY day 1-2 tbs

> >

> > he gets approx 5g of fiber per meal. We've tried prunes, prune

> juice, pear juice, cooking w/ more oil (olive, coconut)

> >

> > he has been tested for celiac, food allergies, and many many many

> other GI 'stuff' and everything came back fine

> >

> > I don't know if anyone has anything else to offer us. With HD

> constipation is an issue`, but confusing for us because we were

> pooping so much for so long.

> >

> > IF you got this far THANKS so much for reading.

> >

> >

>

[Guest guest]

According to our nutritionist, saliva tests the gold standard in testing. More reliable than biopsies. My son had 2 biopsies and blood work. Finally saliva is what proved it (I had always known, but the docs needed "proof"). My son just got backed up again (only the second time in 2 years ...we're making headway!) and we used xylitol. I dumped 2 tablespoons into some water and he sucked it right down. Not something to use on a regular basis, but when he needs to go, it works. Tracie- THANKS. I am thinking about starting mag. Just talked to my ped about it to find out dosing for my 2 yr old. I had started him on a calc/mag supplement RIGHT before this last episode of 'constipation' started and of course that gets me wondering if the supp had anything to do w/ the stopping of the poop!!!!!!!The celiac testing was done a bunch....I know we had basic allergy testing done and also an ige and/or iga....a few of the 'ig' tests. I would have to go and find the copy of lab work to see exactly what tests they were. I know it was more than one test. how reliable are the saliva tests???Thanks,> >> > Hi,> > My story is long so I will try and condense it as much as possible. > My almost two year old was born w/ Hirschsprung's disease and lost 1/3 > of his colon. He had is last surgery to re-connect and remove 'bad' > portion in 5/09.> >> > From 5/09-7/10 he pooped wonderfully...actually too much. We > suffered from brutual diaper rash and had to dilate (tight anus) and > had major middle of night gas issues BUT that entire time he was > pooping 8-10x a day and by a year post surgery (5/10) down to 3-4x per > day.> >> > Then in 7/10 he stopped pooping all together for 8 weeks. We had to > clean him out w/ irrigations. Have been trying senna (as per surgeon- > who is the leading HD expert in the world) in different amounts...> > His system 'woke' up in 9/10 and we were good for 6 weeks, pooping > 3-4x per day EVERY single day. Has never had a hard or formed > poop...it is always oatmeal consistency.> >> > So now we are on week 4 of no poop. Various increases in senna not > working. Was thinking about trying miralax BUT really not wanting too > and surgeon is not on board w/ this type of lax for HD kids.> >> > here is what we have tried.> > ~exclusively breast fed till 7 months- intro'd solids VERY slowly > and he is still BF'ing 2x per day.> > ~dairy free- didn't change a thing-tried it several times for 2-4 > weeks at clip> > ~we have been on probiotic since month one of life> > ~just started prebiotic> > ~multi-> > ~omega's> > ~flax sees EVERY day 1-2 tbs> >> > he gets approx 5g of fiber per meal. We've tried prunes, prune > juice, pear juice, cooking w/ more oil (olive, coconut)> >> > he has been tested for celiac, food allergies, and many many many > other GI 'stuff' and everything came back fine> >> > I don't know if anyone has anything else to offer us. With HD > constipation is an issue`, but confusing for us because we were > pooping so much for so long.> >> > IF you got this far THANKS so much for reading.> > > >>