I need HONEST Opinions From ALL Of You, Please.

[PaigesMom]

I am feeling stumped and overwhelmed with this, and I really need to hear other MOMS AND DADS opinions here. A forewarning, this is probably going to be long for some of you to read so I'll be as to the point as I can be. This subject you will see in the end, is not really about a 'health issue', but more about a cognitive issue so that is why I placed it in this forum.

Here we go:

Paige has NEVER gone poop on her own since birth. We have been on a long road of laxatives and enemas. She is going to be 5 years old soon. She is fighting the hell out of me for enemas, laxatives dont work to make her go, she takes them every day and every 10 days I have to do enema cleanouts on her.

She's had upper and lower GI's, gastric emptying scans (also known as milk scans), she's been biopsied for Celiac Disease, she's been RAST tested for all food allergies, she's been biopsied for Hirschprungs disease at 4 months of age and most recently, yesterday, we had an ano-rectal manometry test, which also detects the possible presence of Hirschprungs Disease by measuring rectal pressures and the body's response to stimuli - anotherwards, does her body feel stool and the urge to push. THANKFULLY, all of these tests over the last 4 years have been NEGATIVE.

So, why doesn't she poop??? I've been to 3 well renound childrens hospitals here, have seen specialists and have actually been to a clinic and she has her own 'bowel management program' - similar to something a person would have after they had a pull thru operation for whatever reason. It involves food and laxatives.

Yesterday, after the manometry test, not that I *wanted* it to be Hirschprungs at all, but I was upset at the fact that another test showed NOTHING. Another anesthesia for nothing and nothing to help my poor girl whom this visibly affects - she stops eating, she begins to throw up, etc.

So now since you all know the basics, here is my question...........The dr. comes out and says to me that she has had everything done known to mankind for this type of problem, and very cautiously starts to talk to me about cognition/mental retardation - and he has NEVER gone there before. I respect him, alot, and I feel he has done his best job to figure out what is wrong with her. He told me that he is beginning to believe that Paige doesnt 'know how' to poop. That she feels the urge, but that her brain is not connecting the sensation with the physics of it, and it is not telling her 'hey, that sensation means you have to poop so push!'. He says that he believes she DOES feel the urge/sensation but that she cognitively 'ignores' it - not in a deliberate sense - but doesn't do anything when she feels it and might even be confused by what she is feeling - ie. not knowing what it means to feel that urge. Then it snowballs, she doesnt go, stool sits in there, hardens, requires enemas, laxatives to keep it soft only and THIS is the reason that the laxatives do not work to make her go, again same reason, she feels it, but doesn't act on it......he says her body will eventually have to expel some just in order to function, but it is her mind that has to make the connection.

Now, I dont know if i CAN or SHOULD accept that, but what else can I do? I mean, there is nothing physically wrong with her.....but how can her brain NOT tell her to push, how can she NOT recognize that signal.........and will she ever??? He says with maturity, in a few years, but geez, she'll be 8 years old by then. He also says that this has been her pattern since birth and that could also play a factor....she's never recognized the sensation and she'll be five..........HOW do I TEACH her to recognize that sensation.

I am looking for other 'moms and dads' opinions on this. Do you really believe cognition can have anything to do with this?? Be Honest. Paige functions WELL, but of course some areas and concepts are better than others.

Thanks for any help anyone would offer.

Debbie

[gabe]

I can definitely sympathize with you. My son, Gabe, was born with imperforate anus and required a colostomy and then 3 pull down surgeries to correct this problem. For the first time in my life, I prayed for Poop! We too struggle with bouts of constipation, diarrehea, etc. I do believe that Gabe too does not cognitively know to push when he receives that stimulus. My theory is this... for whatever it is worth. We have had to do dilations which is inserting a torpedo like instrument into the rectum to keep scar tissue from closing it up. This is very uncomfortable for Gabe and he fights us like crazy. It almost reminds me of a child who is sexual abused. At times changing his diaper is adventure. Therefore, I believe that when he feels any sensation whether it is stool or us dilating the rectum he tenses up and then does not relax enough to push the stool out. To him any sensation=pain-psychologically. Just a theory. We are trying to take Gabe to the bathroom and sit him on the potty. Even if he doesn't poop-we talk about it and cheer for it. Trying to reverse the fear. I do believe that over time he will learn to relax and let nature take its course, he just needs to get over the psychological trama of associating it with pain. She too could be experiencing some fears from the enemas and laxatives. She sees pooping as a painful experience, so when she feels that sensation, she probably tries to ignore it, instead of letting it happen. Maybe since she is older a pyschologist could shed more light on this situation. Gabe is only two. Let me know, if you find answers.

[meghans_mom]

Debbie - wow, that's alot for you guys to go through! I'm going to go through some thoughts of my own...most of which you've probably already have, others which you may find stupid (and forgive my ignorance because I am not in your situation)....so here goes.
First, now I understand that laxatives don't work on Paige. Now the problem was there from birth so the doctors don't feel that part if this inability to produce a BM on her own is from "reliance" on laxatives, right? Because alot of people when they overuse a laxative, the muscles in that area become weak and lazy, and the body becomes unable to move the stuff along and out. What I mean is, along with the low tone our kids already have, could it be that a lower tone developed along w/ laxative use...or would you see straining, etc when Paige was trying to go? I came across this article...and if you are already doing bowel retraining stuff you probably already know this but i thought it had some good points www.findarticles.com/p/articles/mi_g2601/is_0002/ai_2601000228 here it is anyways...Do you use stool softeners with her in addition to laxatives? they shouldn't have the same effect as the laxatives on the muscles.

Now my other thought...to help her to recognize the sensation - would it help at all to get a potty chair and do the same as when trying to potty train - when she evacuates, (as soon as it happens), take the contents and put it in the potty and make a big deal, etc...do this each time so she starts to connect the two? We would do that with Meghan...because she wouldn't tell us when she needed to poop, so she would make the connections.
I have no idea if it would work, but just an idea..additionally, I know with alot of our kids the mere act of sitting upright on the small potty seat with feet firmly on the ground also encourages the ability to go - I know she's not there, but eventually that might help too...along with the regular "constipation" type exercises, like moving the legs in the bicycle motion...and one more, my chiropractor *swears* she can induce BMs in young children thru manipulation...I don't know what she does or how she does it....doesn't happen to my kids but you might think of some kind of therapy like that - sounds crazy I know. And like I said....I really don't know what you guys are going through and can only imagine...so if my ideas sound like it should be "easy" I don't mean to have that tone...I was really just throwing out some of my thoughts, hugs to you - laurie

[Chris]

My gut tells me that this is NOT due to her cognitive impairment. It reminds me of the battle we fought to get Sarah to suck a bottle. She took a bottle for two and a half months then she was so weak because of her heart she wasn't able to take a bottle. I was sure she would take a bottle after her heart surgery but didn't. It was so frustrating. The OT kept telling me that she forgot how to suck, swallow and breathe.

I just don't buy that there is nothing physically wrong with Paige. The muscles that help her poop must be extremely weak. Debbie, do you believe that Paige is physically capable of pooping? Trust your instincts. Give Paige a hug for me! Poor kid has been through way too much!

Chris

[Jessie]

Debbie,

I don't have first-hand experience with this, but I am soooo sorry little Paige (and your family) has to go through this. Reading through the posts I was initially leaning towards the cognitive impairment explanation, but Chris brought up some good points, and if Paige has NEVER had a bm on her own, even as a newborn, it does seem like it is probably something physical. I mean, has she EVER even had diarrhea on her own?? If not, then I would think it would have to be a physical problem because young kids simply cannot control that.

But, my gosh, what other tests can they possibly do on this child to test for a physical condition??

Sounds like most of the kiddos on here have had issues with going to the bathroom and have required anything from prune juice to stool softeners, and also don't potty train fully until they are older, but Paige's condition sounds like it is to the extreme of all of that.

I hope you can find your answers soon in order to help Paige. Keep us posted on how she's doing.


Jessie

[justinsmom]

Debbie we haven't had experience with this either just wanted to let you know we will be Praying for Paige and that they will soon figure out what is going on.

[MB]

Here goes some thinking off the wall and outside the box.

When she uses a laxative, does she poop or does it just fall out as diarreaha? If she poops it out, then we know she can poop when needed.

My very, very loose theory is that she has heard you fret over the poop thing for years and this is her way of controlling her life. She is using the poop problem to gain the upper hand in her relationship with you. As long as you are fretting over something she can control, why should she comply?

I would:

1. Back off. Literally back away from her totally. Only speak to her when you absolutely must. Otherwise greet her with a smile and wait for her to initiate all conversations. Let her control all conversations and answer with as short and to the point answers as possible. Do not give her any more information than what she has asked for.

Example: Paige: What is for lunch?
Mom: Grilled cheese.
Paige: When?
Mom: 10 minutes.

Wrong: Paige: What is for lunch?
Mom: Grilled cheese. You want it now? Are
you going to have chips? Want some
juice with it?

If she is required to do homework each night, tell the IEP team that it is going to be suspended indefinitely. Also tell everyone who comes in contact with her to back off.

Under no circumstances allow anyone to talk about the poop issue in front of her. If she wants to go into the bathroom at school with a book and sit for an hour, let her.

If it is a control issue, ignoring it will allow her to go ahead and poop in a relaxed way.

My son has a friend who will not eat. (He has no congnitive impairment - typical kid.) We asked him to dinner and he immediately replied that he doesn't eat much food and he was nervous telling me this. I told him that the rule at our house was that you don't have to eat anything you don't want to eat - which is the truth.

We went out to dinner and he quickly surmised that we could have cared less what he ordered or didn't order and whether anyone ate any of it. No one asked the kids what they were going to order, just if they were ready. He ordered dinner and ate the whole thing. We never said a word.

My guess is the food thing has taken over his family's life and he is using it to control his parents and his environment. When he stepped into our environment where food issues simply do not exist, he had nothing to prove and he could control how much he ate without feeling pressure.

So back to Paige. My other theory is that she is not pooping because you haven't found a way to make her and she is just plain obstinate (based upon my kids! )

The other possibility is putting her in a bathroom which has been stripped of all distractions, give her a stimulant (greasy hamburger and chocolate malt seems to work at our house) and tell her she can come out after she poops in the toilet.

I would let her stay in there even if it took days. Now, if it is truely a physcial deformity of some kind, then she would never poop and spend all the remaining days of her life in the stripped down bathroom and that would be wrong of course.

But, if the rest of the family was going someplace fun and she had to stay home in the bathroom, maybe she would get on the toilet and at least try to poop to escape bathroom jail. At least you would know she could push. Then you could continue this routine on a daily basis for a couple of weeks until going into the bathroom and pushing a poop out is normal.

You are happy to hunker down outside the boring bathroom (no toys or books for this excercise) for hours on end until you see a real effort to poop on the toilet.
Do not let her see you frustrated at any time. You are very happy reading your book, eating some bon bons or watching a portable t.v.. Paige, on the other hand, is in jail with nothing to play with or look at.

Another thought is to combine this excercise with a suppository that will force her to get rid of it. TALK TO A DOCTOR FIRST. This would teach her to push and you could tell her this is what you want her to do on the toilet.

When my typical daughter was about to enter first grade, she announced that she was not going to go through the cafeteria line. She wasn't going to eat lunch if she had to go through the line. I knew her well enough to know that trying to entice her with rewards was going to eventually fail when the reward didn't suit her.

Instead I took her to a cafeteria at 10:00am and told her to go through the line. She refused. I told her I would wait. I then pulled out a book. She looked at the baby in the carrier and smirked. She knew the baby couldn't stay at the cafeteria all day. I pulled out an entire day's worth of baby bottles and food and repeated that we were staying until it closed and then were going to come back the next day.

It took an hour, but she finally picked up the tray and went through the line. She was obstinate and she truly thought she was in charge and did not have to mind me.
I had to let her decide I was in charge.

I am hoping this is making some sense. While I believe it is possible that Paige's problem is cognitive, I do believe it is possible to teach her to poop by making not pooping a miserable experience.

Our son would not spit out toothpaste. It was definitely a cognitive disconnect. He saw no reason for spitting it out when you could just as easily swallow it - and he liked the taste. It took a private O.T. six months to teach him to spit it out. He finally got sick of her coming to the house and spending his play time brushing his teeth over and over. He finally figured out he was better off complying and being set free to go outside and play.

This is why I like the "boring bathroom" excercise for any potty training issue. Get in. Get it over with. Get back to real life.

Hope this helps. The most important thing is to try it with no emotion and absolutely no disagreement between the parents. If she senses discord, she's got you right where she wants you.

MB

[rickismom]

Judging from the initailpost, this is NOT a control problem; it started too early for that.I am throwing out an idea that I have never tried- but which I think I would if I had your problem. If she has never made the connection, maybe it can be done-- (but you would need two people) (I am not sure that this will work, but its the idea that come to mind.)
When People poop, they use abdominal muscles . Try to have someone stimulate the sphincter with their (gloved) finger--- to give them the need to poop sensation (that she has maybe not been reacting to), At the same time try to gently yet firmly push on abdominal muscles, massage--- the type of thing people do to themselves when constipated to help the poop muscles along. Maybe maybe maybe this could help?

[MB]

I am liking Rickismom's idea. How about adding to it by suggesting that the gloved hand in the rectum take place outside the bathroom and immediately take her to the toilet and push on the abdominal muscles.

People feel the sensation first and then go to a toilet to push.

I am a big fan of Uno Mas just for this reason - a whole continuum of ideas for an unusual problem.

MB

[christie]

DEBBIE girl in ALL Honesty I have nooooo idea To be honest I have never heard of this problem before.

Now this may be sooo out there and sooooo not the case BUT is it possible that due to all the "laxatives and enemas" over the years her body has just become dependent on them?? Like I said I have NOOOO idea, just what came to my mind after readng your post.

No way I see this as a control issue if you say she has had this problem since birth, cause we ALL know our kids like to control but not from the moment they are born

Could it be, she just doesn't feel the urge physcially (sp?)

Sounds to me like you have done eveything possible medically to look for problems Hmmmm again not sure but maybe just maybe this Doc is right, Hmmm not sure.

What I am sure of is Many Many blessings goiing out to you from NJ. As one Mom to another I can feel your pain and I wish I had the anwser for you.



CC ~

[ALLISA]

Wow ! did any of you think poop would become so fascinating to us!!

(((Hugs))) first of all Debbie....that is some story !! I wish you have an answer soon.....I can certainly understand why you hope to see a positive in a test just so that you'll know what you are dealing with, then you can make a plan & move in !!

I don't have much more to offer you other than I would not accept the doctors explanation that it is a cognitive issue....how do all babies manage to go to the bathroom ? How does she manage to urinate ?? That is the silliest answer and even though I am sure you are emotianlly exhausted.... I wonder how you kept a straight face when he/she said it !?!?!

Is she in pain ? Iwould imagine if there was a physical ailment....that'd hurt a lot ! I would lean more towards the thought that being on laxatives & enemas since birth has made her muscles unbelievabley underused & weak.....it sounds as though you all have done so much test & research..... has anyone "worked on" those muscles ? They must have, going through the "bowel management program"....could it be that this program needed to be longer & modified somehwat for her.....just as all lessons & learning seems to be ?

Where did she do this management program....where they used to kids with special needs ? Could it be done with her teacher or therapist involved ?


I feel so badly for you & little Paige.... I hope you have an answer soon ! Please post back & let us know !

[PaigesMom]

Ladies, I really want to thank all of you who replied for your suggestions and thoughts, it means alot to me. We have been going thru it with Paige and lots of different things, mostly this and her ADHD/Impulsive Disorder - she is challenging most people, including her teachers.

Anyway - she has NEVER had a bowel movement on her own, including meconium - they stimulated her with a thermometer. When she was an infant, I had to stimulate her with a thermometer and excavate her, I know, to much info. Sometimes I still have to excavate her. After that it was simply Lactulose, a sugar based 'laxative', which is not really a laxative, per se and thermometer or finger stimulation. Then it was Senekot - senna - and lactulose, then it was suppositories, then enemas, then regular fiber from the store, now it's Mirilax, which is a bulking prescription formula. If any of you know about Mirilax, Paige takes TWO whole capfuls a day or 34 grams (an adult dosage is 17 grams) and she takes 2 teaspoons of Senekot liquid as well every day. Every 10th day she gets 3 enemas - one mineral oil, then half hour later, a whole adult Fleet, then in another half hour another whole adult Fleet, then I do 'infant massage' the I Love You technique on her belly, about 45 minutes later, then she starts to go, no she doesnt push, it just 'comes out' liquid and she panicks - she starts to jump up and down and scream 'mommy, mommy, yucky, yucky, I need my diaper changed' - It's verbatim every time, and she cries.

She goes about 6 times in a row, the first two times being extremely constipated, and water from the enemas and the next few times just diarreah, explosive.

This is well above the 'constipation problems' our kids have, that is why I have always thought she had a physical problem. But I have now been dismissed by the last dr. with the theory that it is not physical as demonstrated by tests, but the lack of cognitive ability to either 'know' what the sensation means, or the lack of ability to 'know' what muscles to use or how to coordinate it.

Her rectum is in a chronically dialated state, constantly open, so dilation wouldnt' help, but it was a great thought. I am going to check out the article meghans mom posted on bowel retraining and mix some of what MB had to say about putting her on the potty (I do not talk to her about pooping or even tell her she is getting meds to go, I simply put it in her food, however, she very well could be picking up on my fears somehow, especially on the 10th day when we do enemas) . And she does know what is going to happen to her, as soon as she sees the box she starts screaming. She is strong, my husband and I have to do this together. I have to sit backwards on her with her arms between my lets or she punches my back to death and my husband holds her legs up in the air. I am sooooooo afraid I am going to hurt her with the enema applicator tip.

Again, I really do appreciate all of your responses, and I agree with MB that hearing all of the different ideas and suggestions is wonderful. I backed away from all message board a few months ago, I just have so much going on with her and I am so involved with being the VP of our local very large group and taking care of my family and working full time that I sort of get lost in this DS 'thing' sometimes.

I am so totally confused on this and I just want someone to 'fix it'. It is NOT good for her - the pain, the throwing up when she eats and drinks and the enema cleanout - and it's definately wearing on me!

ANYMORE responses or follow up replies would be greatly appreciated. Thank you.

Debbie

[laurasnowbird]

Debbie,

I don't really have anything to offer, of than my sympathy for your dilemma, and my admiration for your strength. You are always so upbeat, I truly would have had no idea that you were struggling so with this issue.

Ethan uses Miralax, but only 8 1/2 grams a day. I cannot imagine the mess we would have if he took 34 grams a day. That in itself speaks volumes about what you are confronting. I am truly struck by the fact that in spite of the Miralax, the initial BM is hard and constipated. That seems very significant to me.

There seems to be no question that she is afraid of having a BM, and doesn't seem to understand what is happening to her. The "Yucky Yucky" comment seems to indicate that she has some revulsion for the process. I think if it were me I would definitely try the bowel retraining, although I think in her case it would not be a REtraining. I'm not certain I believe that she feels it and ignores it, but perhaps feels it and fears it? Best of luck to you, please keep us posted about what you try, and at least make sure you come to us for support. We're always here for you. Hugs, Laura

[steffipoo]

HI!!!!! Ya know what??? I don't really see to big a problem here. She is only 5 and well my girl about 5 yrs old finally was able to let me know she had to go #2. And that was really when she was over 5 and a half. BUT the laxatives and such may have made her muscles and body well relax and not hafta feel that urge to go. Olivia my girl drinks a kerns pear nectar a day and this really helps with constipation. And I taught her how to rub down on her belly a certain way when she's on the pot and this help relieve her constipation. Books on infant massage can show you how to massage her belly as to promote stuff to happen in the #2 area. Works like a charm I tell ya. Try looking it up I mean I was a doubting Thomas when they showed me the infant massage when Liv was a baby and sheesh we are still using it.

[laurasnowbird]

Debbie,

This site has a LOT of excellent information, and discusses the whole "process" from eating to having a BM.

This is the link to the main page:

"]http://www.aboutkidsgi.org/characteristics.html#ffr]

Part of the way down the page there is a yellow table titled "Differentiating Functional Fecal Retention from Disease". Fecal retention is when kids deliberately withhold for any one of a variety of reasons. The table specifically points out a difference between retention and "disease" in that it points out that in the case of an underlying disease the problem begins at birth, and that retention does not! There is a diagram on this page that goes into a great explanation of what is physically happening as feces nears the rectum:

www.aboutkidsgi.org/FecalRetention.html


This link from the same page addresses problems when there is no detectable physical problem even after testing:

www.aboutkidsgi.org/cip.html

This information was also interesting, have they tried this? I'm not sure if it is the same as the ano-rectal manometry, but it doesn't appear so. This test is performed in the colon, and measures more than just rectal pressure.

Colonic Manometry

"Colonic manometry may be the "last stop" for patients to distinguish colonic health from disease. After a day of laxatives to empty the colon, colonoscopy facilitates placement of a plastic catheter with 8 recording sites spanning the colon. A colonic manometry study usually lasts about 3 hours. There are three features to normal colon manometry: 1) An increase in colon contractions after a meal. 2) High amplitude propagating contractions (HAPC), which are colonic contractions that move fecal material through the colon to the rectum, causing rectal distention and the urge to defecate. 3) No discrete abnormalities.

In a study to assess if clinical features differentiated functional fecal retention from colonic neuromuscular disorders, we reviewed data from 34 consecutive children referred for colonic manometry because of persistent constipation undiagnosed and/or unresponsive to medical management. This data was published as an abstract in Gastroenterology 116:A4369, 1999.

In the study, colonic manometry was normal in 13 patients with functional fecal retention (FFR). Colonic manometry was abnormal in 8 patients with chronic intestinal pseudo-obstruction, and in 12 of 13 with Hirschsprung's disease and persistent symptoms following surgery. The children with FFR were more likely than others to report bloating, abdominal pain, and constipation, but there was overlap with other groups. The children with Hirschsprung's disease were less likely than those with FFR and chronic intestinal pseudo-obstruction to somatize [describe physical aches and pains], but there was an overlap. One child with chronic intestinal pseudo-obstruction and 8 with Hirschsprung's disease had retentive behavior, and parents of 7 children with FFR denied retentive behavior until it was demonstrated during the test session. Parents of 5 children with FFR denied their child passed enormous stools, but admitted that they regularly intervened with laxatives and enemas early in the course. Parents attending the test sessions accepted the results in every case.

Summary

In conclusion, symptom-based criteria alone do not always discriminate FFR from disease. Colonic manometry clarified colonic physiology for the clinician and parent. For a small group of patients with atypical histories or a lack of response to medical management, colonic manometry results in prompt, accurate diagnosis. "

Anyway, good luck, maybe something here will be of help. Follow your instincts, and don't lose hope! There is an answer to this challenge, the docs just haven't found it yet.