Dr Hive—6 year old GI issues

[Mrs Tiggywinkle]

My 6-year-old is hypotonic and was born premature. We suspect he has Ehlers Danlos like I do but haven’t formally pursued that yet. Constipation has always been an issue because he doesn’t have the muscle tone necessary to move things out ifykwim.

The last two weeks he’s been pooping his pants, usually just a small amount, but today it was a large amount and he somehow walked around most of the day at school with it.  With social distancing the kids and teacher might not have smelled it, but I don’t know.  His pediatrician is not really any help; they did an X ray to rule out a bowel blockage and he doesn’t appear to be constipated right now.  He already is behind his peers in several way physically and cognitively, and is starting to notice, and I think putting him back in pull-ups would be emotionally difficult for him.  We just found out he needs glasses and he’s very upset about that; I’m just not sure i want to do pull ups right now. He is not having diarrhea. To be honest, he doesn’t really seem to be aware that he’s gone in his pants until someone else smells it. 

any suggestions?  I really need help. 

Edited February 11, 2022 by Mrs Tiggywinkle

[bluemongoose]

Could it be something like encopresis? I thought of that since you said he deals with constipation.  

[prairiewindmomma]

I would try doing a daily dose of Mira lax for the next few months and see if things normalize. I am also wondering about encopresis. Leakage doesn’t have to look like diarrhea—small bits of stool are much more likely.

[katilac]

If he were home, I'd say don't do the pullups and try to resolve it. In school? I'd put him in pullups, because the emotional difficulties from having his peers realize he pooped his pants are likely to be far worse than the emotional difficulties from having to wear the pullups. All the more so because he doesn't realize it himself when he goes. 

I would do my best to explain that's it's needed for medical reasons. 

[Harriet Vane]

20 minutes ago, prairiewindmomma said:

I would try doing a daily dose of Mira lax for the next few months and see if things normalize. I am also wondering about encopresis. Leakage doesn’t have to look like diarrhea—small bits of stool are much more likely.

Or prunes.

[LauraClark]

38 minutes ago, bluemongoose said:

Could it be something like encopresis? I thought of that since you said he deals with constipation.  

It sounds a lot like encopresis to me too. I'm sorry-that was a long road for one of mine. Setting up timers to go and try about 20ish min after every meal or snack finally fixed it, but it took a couple of years. Can he bring a change and just go check every little while?

[wintermom]

Poor guy! I'd try to see a pediatic dr who specializes in GI issues. It sounds very similar to what my ds had, encopresis. It can be really hard to get on top of. You may need some support/advice, as diet change may help. 

You may also qualify for disability benefits if you get an encopresis diagnosis. These kind of bowel movement problems are pretty traumatic for people to deal with. 

[Hilltopmom]

Been dealing with that here too, sigh.

Mine also holds it as long as possible and or doesn’t seem to realize he needs to go.

Aside from high fiber as much as I can get into him, we do a dulcolax once a week if he hasn’t gone. It leaks out when he waits too many days. 
Miralax was a disaster- then the leaking was liquid and he couldn’t control that.

[Mrs Tiggywinkle]

I have a referral for a pediatric GI but the wait times are ridiculously long. After researching encopresis it sounds exactly like what we’re dealing with.

It sounds exhausting.  

[Wishes]

He has an IEP right? I would hold an IEP meeting and add some accommodations for bathroom help - making sure he is allowed to go and goes often. Maybe a paraeducator/educational assistant could be assigned to take him. School’s can be grudging about that but you could remind them it is a health/safety issue. 

[kbutton]

We had a similar issue with urine when my son was that age. He would hold it for some reason (would vary), and then if he leaked a little, I think there was enough pressure released that he could wait more without really thinking through why that was possible. 

I think it was part sensory.

In outside the house settings, there were times it happened because someone would set up a rigid rule without meaning to be rigid. Once he stayed on the fringe of a group activity and peed his pants because the adult running the activity said that only one person at a time could leave to use the bathroom, and he didn't know how to let her know it was emergent or that he needed to be an exception. I think the adult made this stupid choice not realizing that probably most kids went straight from class to her afterschool activity, and the younger kids weren't given a chance to go to the bathroom (older kids were probably trusted to go on their way over). 

I would make sure he understands how to know what to do if teachers/adults in charge make stupid, stupid rules without meaning to or what to do if there is a line, and he needs to go more urgently than someone else in front of him in line, etc. Or ask that he always gets to go first (and maybe even gets to go again at the end, if needed).  

I would also give him a way to check that isn't dependent on feeling it or smelling it as others have said. 

And yes, this should go into the IEP. Mine didn't have one at that age, but I wouldn't trust the right thing to happen if it's not in an IEP/504. Those accommodations are protected by law from teacher's sometimes ignorant opinions. If they violate them, at least they have to answer for why they did. 

I am honestly not entirely sure what all went into this going away with my son, but I think it was very much multi-faceted. 

[Mrs Tiggywinkle]

He does have an IEP.  Once we have a diagnosis l’ll call a meeting. I agree it needs to be in there.

It seems to happen more at home than at school, but I’m not sure why. He has a bathroom right in the classroom and as long as it’s unoccupied the kids can use it as frequently as they need. He’s in 1st grade.  Today was a little unusual as far as how much he went in his pants.

He’s receiving services so maybe I should reach out to his occupational therapist, in case there is a sensory component?

[Tanaqui]

If he's been having accidents at school, maybe he's engaged in the material and getting distracted? It may be wise for the IEP to say that he needs to be *taken* to the bathroom on a regular schedule, in addition to whenever he wants to go.

[prairiewindmomma]

Fwiw, based on my IRL experience, I would try taking him off of all dairy for three weeks while you wait to get in with ped GI. You can have sub clinical dairy issues factoring into toileting IME.

[alisoncooks]

Also, in addition to the above mentioned encopresis…did he have GI issues when y’all had Covid?  (I can’t remember if your kids also had it.) I had a week of GI issues when we had Covid back last June, and ever since then, I’ve had intermittent bathroom issues. Not all the time, but easily triggered. Just throwing it out there as a possible co-issue. 

[kbutton]

2 hours ago, Mrs Tiggywinkle said:

He’s receiving services so maybe I should reach out to his occupational therapist, in case there is a sensory component?

I think that’s an excellent idea. 

[cintinative]

It's a long shot, but it is worth running the blood test for Celiac.

My son presented at first with sluggish growth. Then constipation, frequent ear infections/strep, and then the classic symptoms of stomach pain.  That said, I have a friend whose child had no symptoms other than sluggish growth.

I'm so sorry. I hope that it isn't autoimmune and resolves for you.

[matrips]

Can you somehow ask his school to make him go to the bathroom in between classes?  And have a spare pair of underpants in his pocket.  This way he can check to see if he’s already gone, and throw those underpants away.  Is there a more private bathroom that is easily accessible that he can keep a matching change of clothes in?  This will help him at least feel in control of that, since he’s having trouble controlling his bowels. 
 

re glasses- mine loved getting glasses when he was 4.  He had fun picking them out and thought he looked awesome.  And he did 🙂

[Tap]

Does he not like the bathroom? Is there a fan that turns on with the light or is the lighting different in there? A picture on the wall that he doesn't like or is the toilet the wrong size? 

He may be having issues in the home bathroom or the school bathroom, and that is causing issues in all bathrooms. Little kids aren't great at wiping, so the classmates or teachers may not say anything if they smell a little odor. They may not realize what has happened is more than a little poo left behind on a cheek.

I  agree with others to see a GI (which you already are) and to try using miralax for a while to see if he has a blockage that needs to be cleared. 

(((((hugs)))) it is so hard to figure out how to best help our kiddos!!

DD15 has this issue periodically. Her GI said that he could tell she had constipation as a young child because it damaged her colon. We had no idea she was constipated. She didn't tell us and once she started using the bathroom by herself, we had no idea. There are places where her colon stretched out and created pockets. Those pockets collect fecal material and it slowly acted like a dam. We wanted the pockets to retract a bit, so they wouldn't collect as much stool. The first time we did a clean out, was immediately after her colonoscopy. Since she was cleaned out due to the prep, we started in a good place. I did notice that her behavior was better for the few days after her colonoscopy, likely due to the clearing of her sluggish colon and remaining stool. She wasn't feeling the pressure from the stool anymore!  We kept her on a dose of miralax that kept her stools super soft, right up to being diarrhea. 

We started down this journey when she started screaming about stomach pain when she was probably around 10-12. Because her colon looked so bad, her GI wanted her at the point of super soft stools/diarrhea for 6 months to let her colon heal. It worked and her stomach pains greatly diminished. She gets nerve pain from it, so the pain is very intense and lingers for a while once she gets it flared up. Now, when she gets pain building in her tummy, I have to give her miralax for a few weeks to help loosen the dams and to get it all cleared out. She is much better about telling me, when her stool changes and the pains start back up. She really should just stay on miralax, but she doesn't want to, so I let her judge when she needs to start it back up. 

 

Edited February 12, 2022 by Tap