I am wondering if anyone has a young school age child who has had a successful pull-thru but still has frequent “smearing” (enough that underwear and pants have to be changed), and how you deal with it…
I have a 5 1/2 yr. old who will start Kindergarten in the Fall, and I am concerned about his day will go with these almost daily issues…
Has anyone been able to reduce thier child’s smearing with diet, toileting schedules,etc?
Any suggestions would be greatly appreciated!
Texas
we took her in for a barium enema xray and her bowel was normal. I though maybe she had ultra-short segment HD, but physically she’s fine. We’re working to find out what other issue might be causing the constipation. Ugh. So frustrating!
does he take anything to make him go? miilax? maybe he’s taking to much.
thanks for writing back–actually, funny that you mention that. That was exactly the problem a year ago…so We slowly backed off and things got a lot better (on Miralax he has constant diareeah) and he has not taken ANYTHING to poop now for almost 8 months. I manage it with diet alone. His last pull-thru was 2 1/2 yrs. ago.
Some days the consistentcy of his poop is loose, sometimes loosly formed. He has a daily movement after breakfast and after dinner–almost like clockwork—then there seem to be all these other days/times when he “leaks”—I have been afraid to give him too much fiber–certainly dont want to risk backing him up. His system is VERY SENSITIVE to traveling and sugar–both give him diareeah quickly if I dont stay on top of his diet. I have noticed if I add fiber to his diet when I know he will have alot of sugar (Halloween, Birthday, etc) he does well.
He says he cant feel it sometimes when it comes out, but sometimes he can. Maybe he feels it when its thicker??? Therefore add fiber??? Do you know how much a child is suppossed to have daily? We have noticed some stool is pushed out with toots–but not all the time. He is followed by a Dr. so I am confident he is not backed up, he feels fine, tummy isn’t extended or anything.
Of course the Dr.'s just say I’ll figure it out–but it’s hard to find others with this issue. Currently, I have him wearing panty liners to save him changing his pants and underwear so much…but I am hoping to just stop the leaking. It is beginning to get to him a bit emotionally…
What are your thoughts?
Tonya
Just a comment on the fiber thing, i’ve noticed a couple of people mention that they stay away from it. But fiber is good for constipation. Fiber actually draws water into the colon and helps to soften the stool, same thing that Miralax does, but naturally.
Maybe some kids react differently, but i’d say if any kids out there are contipated and haven’t tried fiber, try it! I feed all my kids a really high fiber diet to avoid the constipation that they get and so far with my HD son it’s worked really well.
My son has the same problem with smearing. It often seems that he smears when he passes gas. He is on a very small dose of miralax daily and occasionally ex-lax if it seems he is backed up. I have not yet gone to the step of keeping a diary of his food intake and his daily output…my husband and I both work full time and that is a little much to ask of a daycare provider. I was glad to see that you use pantyliners to help keep your son clean. I have suggested this to my husband and his response was a resounding NO! But changing underwear multiple times daily is exhausting and pull-ups are so expensive when he is potty-trained in all other ways. (He would prefer to have his bowel movements in a pull-up instead of on the toilet for some unknown reason.)
Anyway, I have no advice to offer. I just wanted you to know someone else is in the same boat and understands the frustrations with this disease.
One thing I might suggest, since you mentioned kindergarten in the fall…talk to your school nurse about a 504 Plan. My son is only 3 1/2 so we have some time before he goes to school, but I am a teacher so know about these things. A 504 Plan is a legally binding document for students who have a medical diagnosis that requires special care in school. You can have written in the plan that your son can go to the restroom when he needs to with or without teacher consent. You can have written in the plan what to do if your son does have an accident at school even if it is just smearing. If you have a Plan then all the teachers are made aware of the condition and will know how to respond. (I hope that it will help teachers respond with compassion!!)
Best wishes to you!
what did you mean he’s sensative to traveling?? In what way?
hi, thanks for the comment.
How high in fiber is the diet you feed your son with HD??
Do you approx. the grams per day??
I already give him fruit smoothies with flax seed, whole soy bean powder and sometimes I add a metamucil fiber cookie or two as well.
Tonya
I aim to give my son 20 grams per day, he’s still on baby food and formula so it’s easier to measure per the labels. But I have my 6 year old (who doesn’t have HD but has chronic constipation) on the same diet. Their age group should have closer to 25 grams per day. We do the “whole grain, brown rice” thing with everything that we can and i add things like flax and wheat bran to anything possible. She’s on Miralax as well.
I swear i spend my whole life reading food lables for fat/calories/fiber and protein. 
And even though my HD kiddo isn’t potty training yet, my 6 year old with the constipation issues also has “accidents”. My pediatrician says it’s because they get so constipated that the blockage pushes against their bladders and rectum so that they don’t even know it’s coming out. When we stop the Miralax with her she has accidents, when we put her back on it she doesn’t. It’s really frustrating.
thank you for the information and your response.
I know what you mean about the diary…i have tried it off and on but too hard to be consistent with it.
I went to panty liners (taken out off the pink box before my son sees them, of course!) because his preschool wouldn’t allow pull-ups and my son was beginning to think of them as diapers anyway–plus in the summer they are hot.
If I may ask you another question…my son still wears a pull up at night, mostly because at least 2-4 times a week he has a BM during the night. Does your son do this too?
Tonya
i totally understand the labels thing…my son also has a dairy allergyon top of the HD. Thanks for the guidelines on fiber–i get so tired of “reasearching” so its nice to hear form a parent! I’ll pay closer attention to the fiber amount…if nothing changes then maybe i will try a tiny dose of the Miralax again and see if that stops the accidents like it does with your 6 yr. old…thanks for the info.
I had him on a small dose of Miralax before and it seemed like it gave him very explosive diarreah. that was almost a year ago tho–so I guess i will try again…just when we figure things out–the kids grow/change!!
It is all very frustrating!
I appreciate the feedback.
It’s nice to have someone to discuss things with, thank you.
Tonya
I get really confused - sometimes I hear that we are supposed to be giving the HD kids fiber and Miralax, and then I read that at the Cincinnati Bowel Management Program, the kids have to learn the constipating diet. My 7 and a half year old has accidents every day, wears liners, says he can’t really feel it, and his poops, when he does them in the potty, look like worms. So should he be getting more fiber, to bulk up, or a more constipating diet, to slow down?
Kyle
that seams so strange to me that the 6 year old has chronic constipation but not HD, what do doctor’s make of this?
Truly,
Mary
HI there,
I have 2 boys with HD. My 1st son was diagnosed with long seg at birth, had surgery, did fine…he has frequent loose stools for a year or 2 after but that diminished after potty training. My second son wasnt diagnosed till he was 2 and a half. I knew at birth he had HD but he was tested and I was “written off”… 2 yrs after he was tested and lots of"issues" later, I asked that they biopsy in more than just 1 area…they did suction biopsy in 3 areas and what ya know!!! He was diagnosed with SSHD…he has transanal pullthrough and become completely constipated…unable to feel any bowel movemnet…he had smearing LOT…every day…escp during naptime.it was a mess for a while. Things are"normal" now…he doesnt feel the sensation to have a bm…I ust tell him to go …he’s 7 now.The smearing stopped after Kindergarden…I was very afraid the teachers wouldnt deal with it if he needed to be changed…BUt we managed great. I think the fact that he wasnt on any meds helped…thats just my opinion tho!!
My son does not usually have bowel movements in his sleep (it has happened but very rarely). As someone else mentioned when he does have a bowel movement on the toilet it is thin and wormlike. What DOES that mean? And, why does it take him so long to have a BM on the toilet? He will sit for an hour or more with very little output…but then put a pull-up on him for bed and within 10 minutes he has a BM!!! Talk about frustrating. In our house though, all poo is good poo. We really try to not get down on him about accidents because we aren’t sure that he has the sensation that he needs to go and it’s better to not allow him to get constipated. We see our surgeon in June. We have not been to a gastroencronologist or a nutritionist…both things we are considering looking into for advice. I am not sure how helpful a nutritionist would be though since my son is such a picky eater! This disease is incredibly frustrating!
Hello I am new to the group but can relate to you where you are at right
now. My daughter has issues for many years with same type of bowel thin and
wormlike she still does and she is 17 yrs old. We have had tests done to see
if scar tissue has built up and caused this and they find nothing. She used
to have bowel movements in her sleep but she has outgrown that now. But
still we have huge constipation issues and have tried so many things to help
this with no luck so far. She also can sit on the toilet for very long
periods of time with no luck and after a couple weeks of this she gets ill
and vomits and then it seems the bowel movement eventually happens. It is so
frustrating especially to her, it is our hope that we will find some answers
or ideas by coming to this group.
But just know we understand where you are coming from and things can get
better!
Crystal
My son’s poop is thin and worm like too–that is if he has enough fiber–which i am now finding out! if not, its just a thick heavey pile that sinks…(i wonder what other people not in “our world” would think of all this poop talk?!) No idea why…maybe your surgeon can explain why. Good to know its the same with others.
I too am glad my son just poops, i am trying to fine tune it–why can he feel it sometimes and not others?? Sometimes it leaks, sometimes not…it is frustrating. I have to say the underwear liners seems to be helping him stay cleaner longer and not have smelly pants at school–
ive never had the experience of sitting for a long time on the potty without a bm and then having one later—but i have heard lots of similar stories. Cole goes pretty quickly after sitting on the potty–either becasue he feels a need to go there or because his tummy lets out a huge rumble letting him know its getting ready to blow!
Are your son’s bms really loud/gassy/explosive? Dont know how to decrease that. I remember our surgeon mentioning that gas has a hard time moving thru the intestines…
anyway, good “talking” to you.
Tonya
My nephew was diagnosed as failure to thrive. He was constipated severly
through his first year.
My daughter who was born with hirschsprungs was a short segment. She only
had to have 4 inches removed from her ascending colon. She would have blood
in her stool. It was red so her bowel was extremely irritated. She had to
have a biopsy done to get the results. Hope this helps.
The doctors put our daughter on applesauce and infant cereal at 2 months old
to help her bowels move. Try a good source of fiber. Natural is best…
Sincerely
Melissa C
Hi I am in the same boat. 4 yr old in diapers prefers to poo and pee in them. Miralax half a cap. So 25 of fiber vs miralax helps with going but what about the lack of sensation half the time. And how do I get the 504 rolling. They denied her an IEP after having our meeting saying they can meet her needs in preschool. BS she needs to be checked hourly as she won’t tell you and she gets severe bleeding rashes if she sits too long in her poo. any ideas for her. Off Miralax constipation and bloating. Very frustrating. She is too heavy to keep changing her diapers and I can’t afford it anymore. HELP
Kathy
I wanted to tell all of you that I tried a new product, Mona Vie, with my son and I think it may be helping him empyt out his intestines more fully during the day. He is still smearing, but it doesnt seem to be as frequent. He used to have a loud, rumble just before he needed to have a BM (excess gas?), but that has gone away. for the first time since he was potty trained, he is managing his toileting byhimself (he used to ask for help either because it hurt or was very messy). Anyway, I tried Mona Vie and have decided it is helping enough I am going to continue–so I bought into the company as a distributor. Some of you may want to research it to see if it may help your kids.