Experience with Encopresis?

Onomatopoeia

Ongoing involuntary soiling after a child has been toilet trained, in this case due to a desensitized colon. I feel weird writing this post, but I thought I might find some other moms who were dealing with this here, as from what I read it can associated with various disabilities (ie. conduct disorder, ODD, and maybe some ASDs).  DS (5.5) was diagnosed with this last summer and we're still struggling with it.  It's getting better but it's been a long road, especially coupled with some of his behavioral challenges. 

I feel like a whiner...I certainly realize that as health problems go it could be worse.  It's just that it's not really something I feel I can really talk about with mom-friends, and I know that many of my family members think he's doing it on purpose.  Thankfully his school has been very accommodating, but it gets to me as I know that kids can be mean and I don't want him to be remembered by his classmates as the kid who poops his pants.  He has a tough enough time making friends.

Anyway, has anyone else been through this and survived?  I know it can take months, even years, to fully correct...I think when we first learned of it we were very naive to what it would entail.  Sometimes I feel like my whole life revolves around poop now.  It didn't help that our pedi was pretty useless (suggested more fiber and sticker charts...yeah right), and it wasn't until we demanded a specialist that we got some answers and some support.

Onomatopoeia

Thanks for taking the time to respond, auntie.  I lurk here occasionally and I've always thought you to be very helpful and insightful with your answers.   I have to admit to getting very frustrated with him when it first started (before a diagnose).  After reading that many children who suffer from this also suffer from extreme shame and humiliation and often need counseling I cried for days.  I felt like such a horrible mother, despite the fact that DS rarely even seemed to notice an accident.  As I said, our prior pedi really minimized it and it was just another situation where we really learned the hard way not to take medical info at face value and to demand more info, more resources, and more accommodations. 

kirbear

My daughter (almost 6) survived encopresis! It's a long, hard road. We battled it for years and it was awful. We also had trouble with our pedi. Our success came from a team approach of GI and child psychologist. I'm on my phone so it's hard to type but feel free to pm me your email address and I can share more. Hang in there and know there is hope!! I was always amazed at how few resources there are for something that is supposedly pretty common...

Onomatopoeia

kirbear:

My daughter (almost 6) survived encopresis! It's a long, hard road. We battled it for years and it was awful. We also had trouble with our pedi. Our success came from a team approach of GI and child psychologist. I'm on my phone so it's hard to type but feel free to pm me your email address and I can share more. Hang in there and know there is hope!! I was always amazed at how few resources there are for something that is supposedly pretty common...

Thanks!  PM coming your way.  I agree re: the scarce resources.  No one that worked with DS...his daycare, his pre-school, etc, had ever heard of it.  I had to do a lot of info-sharing.  Thankfully the school nurse knew all about it, so when he started K  it was so nice to have someone (besides DH and I) be able to discuss it with the teachers and admin.