Hirschsprung Disease - Mothering Forums

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#1 of 2 Old 05-23-2014, 06:27 PM - Thread Starter
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My daughter will be 4 in July, she has been below the 10th percentile in height and weight since she was 1 years old. She has stopped gaining weight since she was 2. her height has increased a tiny bit, but that is all. She hardly ever eats, just a bite or two, even with sweets. My family has always been very tall and and husky.


Since she was born she has had trouble with constipation. They performed an u/s when she was 4 months old to make sure she was swallowing and everything was heading to the stomach. They told me to start fruits and Caro in her bottles. Since then she has been on a high fiber diet she drinks tons of diluted juice (apple, cranberry, grape and prune). She is allowed milk once a day and cheese once a day. Her pedi had her on a 1/4cap full of Miralax a day, no change, so he increased to 1/2 a cap full. No progress so I started adding fiber gummies to the mix, because the dr kept pushing more fiber. She was on a 1/2 cap full of Miralax and 3 child fiber gummies. It helped push out some, but it was always very hard. She would cry and cry. He referred us to a Pedi GI, he said it's most likely functional constipation, so he increased Miralax to 1 cap full a day and a "clean out" (3-4 cap fulls in one day) and, of course, more fiber. Sigh. This was 6 months ago. It helped some she had some movement, but again it was hard. She has bowel movements every 5-6 days, I know it's coming because she will start to have smears in her diaper (yes, she is still in a diaper for her erratic stools, but peeing potty trained fully), the smears were the consistency of peanut butter and only a tiny bit several times a day. The GI was fine with it as long as it was coming out and was softer.


Two weeks ago she began the smears 3 days in to no bm. I started to try cleaning her out with more miralax, sometimes giving her 4 fiber gummies. After day 5 of no bm she threw up after eating dinner (very uncommon). The next morning was Sat so her GI's office was closed, so I brought her to her pedi' after hour clinic. The dr there said her stomach was distended, but did not feel any blockages and the rectal exam he was unable to feel any stool. He said maybe she isn't eating enough since she only takes a bite or two. Then told me to come back in a few days if still no bm. I took his word for it and tried to get her to eat more, her favorite foods she eats all day everyday is oranges, apples, blueberries and strawberries. Three days in I noticed she hasn't passed any gas and the smears had stopped completely. The fourth day I did a clean out of 4 doses of Miralax. Still nothing. Called the GI on the fifth day, Friday, but he was out of the office, so I returned to the pedi clinc. A different dr saw her and said (which I could definitely see) her stomach is very distended. She did a rectal and there was, again, no stool. She then sent us to Xrays and called our GI. The xrays showed that the stool was compacted very high up and had reached her stomach. The dr told us the GI's instructions were to give her an enema, 3 doses of Miralax and chocolate exlax consecutively and call back within 2-3 hours. After completing the instructions only a small nugget came out and the liquid from the enema. The GI sent us to the hospital where she received a NG tube. That is when she began throwing up fecal matter. After the nausea had settled they began the Golytely meds through the NG tube. She was there for 2 nights. On the 2nd night she stopped making progress and they had to do an adult enema to continue the treatment. We saw the GI two days ago to follow up. He told us he is going to test her for Hirschsprung Disease. We start with the barium enema, if that shows the signs, then a colon biopsy, if that confirms we will begin a colon resection.


My question is (sorry for the lengthy back story) is it normal for GI's to jump to testing for something so rare like hirschsprung's or is this something normal they test for in all children? Does he believe she is showing signs for this particular disease?


Also, if it is not Hirschsprung's what could cause major constipation since birth, no weight gain and growthdelay?? The only time she has gained weight was the past two weeks when she had 2lbs of stool. Now she's back to her original weight. She does not have Crohn's or allergies or anything like that.


Thank you for any advice or input. :-)

uhoh3.gif Completely overwhelmed, Kim.dizzy.gif
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#2 of 2 Old 05-23-2014, 09:05 PM
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The "smears" you describe are a certain sign of blockage. This is stool from higher above the blockage squirting around it. Well, you do know now that there's been quite a blockage. I'm sure your daughter has megacolon -- where part of her colon is stretched out and the muscles are weak. The question at this point is whether this is congenital -- meaning from birth -- meaning that the nerves are not completely formed in a region of the colon (Hirshbrung's) -- or whether it's' just stretched out and weakened from long periods of constipation backing up. It's curious that it stays so high up. Yes, I would certainly test for Hirshbrung's, well... depending upon how likely the below is to be the cause.

If it's not congenital, then of course the question is why is she so constipated from birth? At least four different recent studies on diet and recurring constipation in children found cow milk allergy to be involved in approximately 80% of chronic constipation cases. Allergy tests and allergists cannot detect this. Only a diet of 100% avoidance of any milk products can diagnose this, and it can take some time for results because of a likely weakened region of colon. Don't confuse this with lactose intolerance. It's milk proteins that are the offenders and any traces of butter, whey, casein, cheese, etc. need to be avoided. Even lactose can be tainted with traces of protein. At this point, a milk-free diet would likely have to be combined with gradually reducing laxative therapy to give the colon time to recover some of its strength where it's been stretched out. Have you ever tried 100% milk avoidance -- from your breastfeeding diet and/or with amino acid formula (hydrolyzed formula is not hypoallergenic enough), or later with solids? I can give you more clues and info about this, after I know what trials you may have performed. Of course, other foods could be involved as well.


You've worked very patiently with your daughter's challenges and made good efforts to seek help and to report findings to doctors. Hang in there. I think one of these two possibilities will be the answer, and both are treatable. 

Linda F. Palmer, DC
"The Baby Bond"

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