Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Yes, diffenitly, my son soils, he has been diagnosed with hirschsprungs. The thing about encropesis is that many arent holding on purpose and some of these are possibly a nerve issue....such as hirschsprungs, damaged nerves etc etc. This then leads to the hard stools(same as holding) and then the soiling(slow movement of stool getting through or hard stool and liquid squeezing around hard stool. Has she been diagnosed with encropesis? Maybe he is telling you that because she is holding he dont think she has hirschsprungs?? But honestly until the biopsies are done(it took 3 different times/depths of biopsies, 3rd was surgical), no one can determine if it is hirschsprungs etc or even holding in some. Hirschsprungs can appear as a holding condition. But yes diffenet soiling!! That is good he is going to do the scopes etc. this is a step in the write direction. Typical symptoms of hirschsprungs(HD) is noticed/diagnosed as infant/baby age. Some like my son are not discovered until late due to intense maintenance. We was told it is rare for the late diagnoses, infact the surgeon said she doubted he had HD due to his age and was surprised for sure when he tested positive for it, but said she does get late diagnoses at times. Usually the first sign of HD is no stool passing just after birth, but in saying that our son didnt have that problem that I can recall. Also my son has had good weeks and then out of the blue does horrid, it seems to be a vicious cycle(but have always used maintenance). Keep us updated! Jennie<>< Subject: Hirschprungs DiseaseTo: miralax Date: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I am also wondering if my now 3 year old son has Hirschprungs. He was born with an imperforate anus that was corrected with surgery. His stools are always very small - no matter if it is diarhea or constipation (even on miralax the wonder drug...and now using natural alternatives). He just never gets any sizeable amount out. We were so nieve when he was in infant thinking - our son never has those nasty blow-outs! He has had 13 anal dilitations- the doctors keep suggesting its the size of his anus...but it shouldn't matter when it is toothpaste consistency and it still happens shortly after a dilation. We go through 4-5 times the amount of diapers as a regular kid and potty training is still a mystery. Any ideas? Pam Subject: Re: Hirschprungs DiseaseTo: miralax Date: Saturday, January 10, 2009, 2:32 AM Yes, diffenitly, my son soils, he has been diagnosed with hirschsprungs. The thing about encropesis is that many arent holding on purpose and some of these are possibly a nerve issue....such as hirschsprungs, damaged nerves etc etc. This then leads to the hard stools(same as holding) and then the soiling(slow movement of stool getting through or hard stool and liquid squeezing around hard stool. Has she been diagnosed with encropesis? Maybe he is telling you that because she is holding he dont think she has hirschsprungs? ? But honestly until the biopsies are done(it took 3 different times/depths of biopsies, 3rd was surgical), no one can determine if it is hirschsprungs etc or even holding in some. Hirschsprungs can appear as a holding condition. But yes diffenet soiling!! That is good he is going to do the scopes etc. this is a step in the write direction. Typical symptoms of hirschsprungs( HD) is noticed/diagnosed as infant/baby age. Some like my son are not discovered until late due to intense maintenance. We was told it is rare for the late diagnoses, infact the surgeon said she doubted he had HD due to his age and was surprised for sure when he tested positive for it, but said she does get late diagnoses at times. Usually the first sign of HD is no stool passing just after birth, but in saying that our son didnt have that problem that I can recall. Also my son has had good weeks and then out of the blue does horrid, it seems to be a vicious cycle(but have always used maintenance) . Keep us updated! Jennie<>< From: inserram <inserramhotmail (DOT) com>Subject: Hirschprungs DiseaseTo: miralax@yahoogroups .comDate: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Do you know if befor or after the surgery if they did a biopsy? With hirschprungs there is days of buildup typically than leaking or the explosive bms or no bms if a blockage occured. Have they checked him for motility issues of the muscles? Jennie<>< From: inserram <inserramhotmail (DOT) com>Subject: Hirschprungs DiseaseTo: miralax@yahoogroups .comDate: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 No...there was never a biopsy...but the surgeon said that he tested with some kind of electrode to see if the nerves received a message and then produced a muscular reaction and that was a good result at the rectum area. I think there may be issues further up. With no intervention, he could go days without a bm and then it will be small amounts every 30 minutes for a day or two. Does this make any sense to any of you Moms who are the real experts? Pam From: inserram <inserramhotmail (DOT) com>Subject: Hirschprungs DiseaseTo: miralax@yahoogroups .comDate: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Something that kinda bothers me about scopes etc is they can only see about 1/3 of the whole intestines. Our sons very 1st scope at 5yrs showed nothing but he did have upper scope and this did show restricting/inflamed esophogus(from reflux). So then they tell you nothing was seen with the scope but dont seem to mention the only seeing 1/3 of the whole intestines. I know they have what is called a pill cam, this is swallowed or inserted and then moves through the whole gi and so much is found from this that when they had done previous scope and found nothing. Im wondering why this isnt used more often? Maybe to expensive? Im not sure, just wish they would start using it more often. I knew something was obviously going on with my son but laking in testing technoligy. Even with knowing he has hirschsprungs this is limited to lower areas and from what I understand the HD can occur throughout the whole gi in I think it was about 15% of hd cases. Has your son ever had a real good citrate cleanout? Sometime the gi gets really sluggish over time with buildup. We would see real good after affects when our son would have the mag citrate cleanout! Jennie<>< From: inserram <inserramhotmail (DOT) com>Subject: Hirschprungs DiseaseTo: miralax@yahoogroups .comDate: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Good to know about the scopes. I guess the pill cam might be too much for a young child to swallow? They must have tricks for that too. He has been trying Magnesium in various forms and it seems to cause things to get really irritated. It has been suggested that something other than the Magnesium is causing the irritation, so I trying to get to the bottom of it by switching kinds of magnesium. It might be a food intolerance and not magnesium at all, but I am still figuring it all out. With the magnesium, he has been having frequent (every 20-30 minutes) liquid stools in small amounts. It doesn't seem to actually be moving very much at a time...a few drops of loose stools and then again 20 minutes later. Thanks for your thoughts! Pam From: inserram <inserramhotmail (DOT) com>Subject: Hirschprungs DiseaseTo: miralax@yahoogroups .comDate: Friday, January 9, 2009, 10:38 AM Has anyone's child wound up with Hirschprung' s Disease and they also had soiling at times? My doctor is leary to test for this because he says it's rare for children to soil (encopresis) if they have this. We are going around and around with constipation issues for almost 4 years. I was going to post back in Dec. with a success story because I took my daughter off soy milk and started the chiro. She was on the potty 2-3 times a day with good BMs. Well, she just spiraled backwards quickly. After about 5 weeks of doing so well, she is not constipated again. This keeps happening. We go to the GI and he tells us to do 3-5 days of enemas, start toilet sitting again, up the fiber, etc., etc. He finally is going to do a sitz marker study now. If two weeks passes and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal biospy. She has had constipation issues since 6 weeks, on Miralax since 10 months old.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Here is an informative link on HD! Jennie(son with HD)<>< > > Has anyone's child wound up with Hirschprung's Disease and they also > had soiling at times? My doctor is leary to test for this because he > says it's rare for children to soil (encopresis) if they have this. We > are going around and around with constipation issues for almost 4 > years. I was going to post back in Dec. with a success story because I > took my daughter off soy milk and started the chiro. She was on the > potty 2-3 times a day with good BMs. Well, she just spiraled backwards > quickly. After about 5 weeks of doing so well, she is not constipated > again. This keeps happening. We go to the GI and he tells us to do 3-5 > days of enemas, start toilet sitting again, up the fiber, etc., etc. > > He finally is going to do a sitz marker study now. If two weeks passes > and she isn't great, he'll schedule colonoscopy, endoscopy, and rectal > biospy. > > She has had constipation issues since 6 weeks, on Miralax since 10 > months old. > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Ill try this again:) http://www.hopkinsmedicine.org/geneticmedicine/Clinical_Resources/Hirs chsprung/WhatisHirschsprung.html > > > > Has anyone's child wound up with Hirschprung's Disease and they > also > > had soiling at times? My doctor is leary to test for this because > he > > says it's rare for children to soil (encopresis) if they have > this. We > > are going around and around with constipation issues for almost 4 > > years. I was going to post back in Dec. with a success story > because I > > took my daughter off soy milk and started the chiro. She was on the > > potty 2-3 times a day with good BMs. Well, she just spiraled > backwards > > quickly. After about 5 weeks of doing so well, she is not > constipated > > again. This keeps happening. We go to the GI and he tells us to do > 3-5 > > days of enemas, start toilet sitting again, up the fiber, etc., > etc. > > > > He finally is going to do a sitz marker study now. If two weeks > passes > > and she isn't great, he'll schedule colonoscopy, endoscopy, and > rectal > > biospy. > > > > She has had constipation issues since 6 weeks, on Miralax since 10 > > months old. > > > > Thanks, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 http://www.hopkinsmedicine.org/geneticmedicine/Clinical_Resources/Hirs chsprung/WhatisHirschsprung.html > > > > > > Has anyone's child wound up with Hirschprung's Disease and they > > also > > > had soiling at times? My doctor is leary to test for this > because > > he > > > says it's rare for children to soil (encopresis) if they have > > this. We > > > are going around and around with constipation issues for almost 4 > > > years. I was going to post back in Dec. with a success story > > because I > > > took my daughter off soy milk and started the chiro. She was on > the > > > potty 2-3 times a day with good BMs. Well, she just spiraled > > backwards > > > quickly. After about 5 weeks of doing so well, she is not > > constipated > > > again. This keeps happening. We go to the GI and he tells us to > do > > 3-5 > > > days of enemas, start toilet sitting again, up the fiber, etc., > > etc. > > > > > > He finally is going to do a sitz marker study now. If two weeks > > passes > > > and she isn't great, he'll schedule colonoscopy, endoscopy, and > > rectal > > > biospy. > > > > > > She has had constipation issues since 6 weeks, on Miralax since > 10 > > > months old. > > > > > > Thanks, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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