Child with Encopresis? Any experiences?

[houghchrst]

I have an 8yr old that has been suffering from bowel issues for the last 3 (?) years. We figured it was just laziness and he didn't want to get up and go because he was too busy playing. He has been to the doc and he suggested Miralax so we did that for a while along with regular potty times, grounding a day off the game for every time he had an accident and that seemed to work for a short period of time. He has only had maybe three periods where he has had absolutely no accidents and they were always short lived.

The last was after we discussed with his doctor the possibility of his being bound up and bowel contents leaking out around the blockage. Never once was it referred to as a condition and I really was kind of left hanging in treatment, Mirilax and regular potty times. I gave him an enema when he began telling me that it hurt to go potty and things got much better for awhile. Then back to the same. I guess it is kind of my own fault because we just thought it was a combination of laziness, distraction, and not wanting to go to the school bathroom.

So, this morning he wakes me and says mom I went potty in my pants while I was sleeping. Okay, time to get to the bottom of this. So first thing on the puter this morning is I google children with bowel issues and up pops Encopresis. This is exactly what he is going through.

I was wondering if there are other parents out there that have gone through this. Did you use big boy diapers when going out in public to help save the little guy's pride? What did you use for long term stool softener? Just wondering what would be safe. We used Mirilax for a long time but I am getting some conflicting information.

[Naominjw]

Sorry no solutions for you.

Just some thoughts -

Look into gluten sensitivity/ Celiac & other food sensitivities.
And mitochondrial function.

And, I sent you a private message.

[LIZARD]

Aw, (((((((Christina)))))))). :(

I'm sorry to hear this. I know how frustrating it is because we went through it with our son. He's autistic and has a HORRIBLE diet, so after some frustration with trying to get him to take Miralax (he refused), I put him on a high-fiber diet, using foods I knew I could get him to eat. We had to play with it for awhile, but he loves the Fiber One Apple Streusel bars, so he has three a day, each with a full bottle of water, and generally, we don't have any more problems with it. When we started, his poor intestine was COMPLETELY BLOCKED. :eek: :(

As Naomi mentioned, I suspect he has the same problems I do with Candida/Leaky Gut and am learning how to implement the diet so I can start him on it. If he's even 10% as miserable as I was just weeks ago, it'll be worth it.

The Gluten-free Casein-free (aka GF/CF) diet is hell to implement, especially with older kids, but it may be what he needs. Ultimately, that'll probably be what I'll do, too.

*hug and good luck!

LIZARD :)

[Naominjw]

The Gluten-free Casein-free (aka GF/CF) diet is hell to implement, especially with older kids, but it may be what he needs.

My younger daughter wanted to feel better so badly she would have done anything at that point. She went GF/CF/EF/SF and never looked back. She was 19 by then, but I know adults a lot older who will not change. My daughter feels so much better. It took a while for her older sister to finally agree to be tested because she wasn't willing at first to change diet... but now that she did she also feels so much better.

I was shocked that some people poop once or twice per week and they live like that :eek: I am shocked that doctors don't ask and don't suggest lifestyle changes at least to try. I have had just an occasional (very very rare) problem for about a day... and know how that felt, so I cannot even begin to imagine not going for two days, let alone a week!!!

My younger one has quit eating red meat--eats lots more veggies- which the older one still does not like. Anyway, the younger says that now she doesn't even feel well when she eats heavy meats or processed foods. I WISH I had enough self-motivation to eat as well as her. The younger one though feels like she is fighting for her her life, so feels very motivated about healthy eating.

[LIZARD]

My younger one has quit eating red meat--eats lots more veggies- which the older one still does not like. Anyway, the younger says that now she doesn't even feel well when she eats heavy meats or processed foods. I WISH I had enough self-motivation to eat as well as her. The younger one though feels like she is fighting for her her life, so feels very motivated about healthy eating.

Changing your eating drastically is really tough, and the older you get, the harder it is. I'm 42, and I thought having to go GF would be my worst nightmare. Not by a long shot!!!!! Kicking Candida is SO much harder because, among other things, I have finally found some yummy GF foods...and I have to stop eating them for several months. I am also not big on most veggies, but fortunately, there are some I like--broccoli, asparagus, spinach--and I eat them in decent quantities (although could probably do better). It sure doesn't help that I also have oral sensitivities from a birth injury and hydrocephalus, but at least I'm slowly improving. I have only had red meat maybe three times in about 6 months, and most processed foods are out, too. I can sure ID with your younger daughter. When your health is a train wreck, you do what works, no matter the hassle.

LIZARD :)

[houghchrst]

Thanks you guys, I think adding more fiber through fruit and maybe raw veggies, the only way he will eat them, lol, should probably help quite a bit. I really think he will go for the Fiber One bars and has always been a big water drinker so adding more shouldn't be a problem. Another thing I have been reading is exercise plays a big part and due to my inability to get out much, especially in the summer as I just wilt in the heat, he doesn't get a lot of exercise. I promised myself to try to do better this year even if it is finding someplace indoors for him to play. Can't afford to really get out much.

Oh geez I have an older son that I took to the doctor for chronic pain, he has seen many, and this doctor put him on mega doses of Vit D, Magnesium and Fish oil and said to eat as if you are a wild animal. A lot of meat and above ground leafy greens lol. Nothing else. After all aren't we just animals. This guy actually wrote a book and is sort of famous for his teachings on Vitamin D. My kid about had a heart attack. He is 16 and was not happy when he was told no more milk or swiss rolls. Of course the supplements helped quite a bit but there really was no way we could his diet that extremely.

It is hard when there are many in a household and only one needs a change. Especially when there are picky eaters. Thank you for your input and ideas. If what I try doesn't help then we are going to have to do a lot of digging. I am praying for a simple fix. For his sake.

[Naominjw]

It is hard when there are many in a household and only one needs a change. Especially when there are picky eaters. Thank you for your input and ideas. If what I try doesn't help then we are going to have to do a lot of digging. I am praying for a simple fix. For his sake.


The rule in the households for each daughter's changes is NOTHING they couldn't eat was allowed in the house for the first 6 months. Period. Go through and throw everything not allowed away. Consult with a dietitian. Go to the free meetings, seminars, and cooking classes many whole foods places, hospitals, etc provide for gluten-free and better eating. The reason is that when we have to change a diet, simply removing foods doesn't work. We have to think in terms of ADDING foods we can eat.

My younger daughter eats a vastly more diverse diet than she ever had. And we are such picky eaters... or so I thought. I try the foods she and her boyfriend now make and they are delicious!

In my own house, I admit that because of my own laziness and the fact that my husband is often away, I do have a bunch of his frozen dinners in the freezer for him to grab, and he has his half-n-half in the fridge for his cofee even though no one else can have it. He was willing, though to do the 6-month rule if I needed it. In a house where the kids are still at home though, I would definitely just make it a permanent rule -- all foods in the house are OK to eat.

It is like going to another country and all the foods are different from what you were used to. There is lots to eat - it is just all different.

It is a lifestyle change.

So that's my suggestion -- it doesn't matter that the change is just for one. Make it a change for everyone in the household. Show it is not a "hardship" -- just a change. And it is do-able because you are all eating like that now. Every meal.. everything in your house - must be OK for everyone to eat.

BTW, eating like an animal -- meats, veggies, fruits, sounds healthy. Nuts too? And beans. But the no grains at all...???? .... I have heard of that, but that does seem very very difficult. Is that actually healthy??? I hope someone else can answer that -- I don't know. We don't eat gluten, but we still eat brown rice, corn, quinoa, and some other grains. We still have home-made breads and cookies.

"Naomi"

[houghchrst]

Oh no, no fruits lol. Supposedly the wild animals didn't eat fruits and berries, no nuts, no legumes, not even early early man. http://www.youtube.com/watch?v=GsbCP42BDtw. I just found this though I have been on other sites of his.

He says only meat and above ground leafy greens.

[jcc]

My neice went through this... and it was a problem for her right through her teens... and may be still today for all I know. But she had the leaking, dirty underwear, pebbles if she was lucky, and she often smelled like you know what :(. They never did get any concrete answers... just one failed medicine after another, several trips to the ER for extra bad times, and ... lots of enemas. It was something she just lived with, more or less. Far as I know, though, they never tried ANY dietary interventions.

But... I would like to second the notion of looking into gluten sensitivity. While typically you hear of gluten sensitivity in relation to diarrhea... it can also cause the opposite.

As for supplements... both magnesium and vitamin C are supplements associated with loosening stools. Don't know if that is practical to try or not.

I actually know a lot of gluten free folk who have gone totally grain free, and that is the only way they feel good. I have not made that leap, myself, but what that doc probably meant by eating like a "wild animal" is eating a Paleo diet... and I think some do that with no grains, and others use some whole grains. Technically, its probably no grain?

Here is a good overview:
http://altmed.creighton.edu/Paleodiet/Foodlist.html


I'd definitely keep working to figure it out. Oh... is he off dairy? I haven't read everything in these threads about this yet.

I suppose you could do a short trial of just meats and green vegetables? For 3 weeks or so and if things were improved, then slowly start adding some other things back... one new food a week? And... I don't know... some people don't do well with meat, either! I think experimenting with diet may eventually get him to a better place.

[houghchrst]

Thank you much jcc. I will check out the overview. He loves his eggs a couple of times a week but only has a bowl of cereal once in a while. He is a big meat eater. Chicken mostly. Baked.

[Naominjw]

He says only meat and above ground leafy greens.

Sounds like Atkins diet.
I would NOT handle no fruits, nuts, seeds/grains.

And... my younger daughter who eats such a great diet is still low vitamin D.

Him talking about the impact of low vitamin D in childhood handicapping them into adulthood.... :o :( :eek:

Anyway, she takes supplements and was still low on 10,000iu vitamin D.

We are working on it.

[houghchrst]

I hear that, I love my fruit and stuff. I was reading an excerpt from this doc's book and I see him referring to eating fruits so I don't know why he was telling us no fruits and such. He okays it in his book.

My oldest is on 4,000 IU of D but we haven't gotten the newest results back yet. They are also doing some kind of genetic screening on him.

He suffers from chronic pain and has all the points of Fibromyalgia but the doc thinks that vitamin D is going to take care of it. I have been taking vitamin D for almost a year and my Fibro isn't gone lol.

[jcc]

Have you read about gluten/casein/soy sensitivity being culprit in some cases of Fibroymalgia? Perhaps you have a gluten sensitive family? Have you ever been screened for it?
http://jccglutenfree.googlepages.com/fibromyalgiachronicfatiguesyndrome

Especially take a look at these personal accounts....
FIBROMYALGIA: WHAT DOCTORS DON'T KNOW OR TELL PATIENTS (http://www.mdjunction.com/fibromyalgia/articles/fibromyalgia-what-doctors-dont-know-or-dont-tell-you)

Is it FMS, CFS, or Celiac Disease? (http://www.geocities.com/HotSprings/spa/4003/)

Pain, Pain Go Away! (http://dogtorj.tripod.com/id33.html)


Do you know if your vitamin D levels have ever reached optimal level? I just know several people who have had a heck of a time getting their vitamin D levels up, despite supplements. Sometimes very high doses are required.

[phabulous]

Hello, my 9 year old daughter has been battling encopresis for 4+ years. I remember sitting down at the computer and realizing there was a name for it...just like you were saying. We have had MRI's, analrectal manometry, colonoscopy, endoscopy, and allergy testing, including gluten sesitivity. Nothing came back abnormal. We were on miralax for years. The most helpful was purchasing a program/book from soiling solutions (google the website). They have a very helpful and involved servelist forum. Until using this protocol, we couldn't string more than a handful of days together without soiling. We had weeks of success in a row. Just a few weeks ago, she had a seizure. (Again, nothing abnormal with the MRI and catscan, thank goodness.) But the doctor is curious if there is a connection. I know that everyone is different, but I would be more than happy to talk to you and perhaps it could save you time and frustration. This is the first time I have used this forum...I was googling encopresis and epilepsy and found this. Feel free to contact me (directly? 'cause I don't know if I could find this forum again.) I wish you well.

[Naominjw]

Just a few weeks ago, she had a seizure. (Again, nothing abnormal with the MRI and catscan, thank goodness.) But the doctor is curious if there is a connection.

I saw an episode of "House" where a guy had seizures in a body part other than the brain and was put on antiseizure meds. I wondered if that was at all possible - I never heard of it before.

On the other hand, my daughter had touches of encopresis when younger... and also had Tourettes and episodes of ataxia/falling down abruptly. Other parents told me that the bowel problem was not uncommon in Tourettes. Some parents here have suggested that the falling down could have been seizure activity however brief. An EEG was negative, but of course, that did not rule out seizures. An antiseizure medication did stop what looked like absence seizures. I can't say exactly when the mild ocassional bit of encopresis stopped.

Anyway, I just found this idea interesting.