Years of Encopresis... & not getting better

[eoe1973]

I am having the same problem with my son , but he is autism and has mild retardation too , the doctors here in Iceland where I Live have given up and they say there is no helping him I just dont want to belive that, so I went on the net now trying to find anyone who can direct me to a specialist who can help my son. he is 13 now and this has been going on for about 7 years i am sooo tired my family, my other children are so tired and my son who has encopresis just acts as he dosent care but i dont belive that... pls could you forward me link og email me about treatment options if you know any. thank you so much
Esther Osk.
ICELAND

 

[IT1967]

My son's only 8, but he's had this problem on and off for years. Really it was constant until the last few years. We had had him on Miralax pretty much continually. Then, maybe it was here, I read some really scary stuff about Miralax and have stopped it completely. I still pretend to give him the Miralax, so he thinks he's still getting it, so that psychologically, he still thinks he won't get constipated. Seems to be working for now.

 

[Estherfromjerusalem]

Dear eoe1973,

I see you have written on an old thread. It is such a painful subject, this encopresis. I see that you mention "the doctors in Iceland." Is that your family doctor, or a specialist? Because it is important that a child with encopresis is seen by a pediatric gastroenterologist -- i.e. a gastro doctor for children. That is in order to rule out any specific gastro problem. Once that is ruled out, then you are in the same awful situation that we all were (or still are) in. Many many years ago, before using "the net" became such an integral part of our lives, I found a support group for parents of children with encopresis that worked through the e-mail, and it saved my life. It doesn't exist any more, but one of the things that everyone on it said was that children seem generally to grow out of it at puberty. I was feeling quite desperate, but because of the support I received on this e-mail group I became calmer and I found my own way of coping with it. My son's behaviour continued to be awful, but the encopresis suddenly disappeared when he was 13 and a half. Just like that. No rhyme or reason. And since then it hasn't reappeared.

You can go into the archives on this site and see some quite detailed discussions about encopresis.

Is your name really Esther? If so, I am thrilled. Up until now, I have been the only Esther on this group (as far as I know, anyway). So welcome to another Esther.

Love, Esther

 

[Pooped out and lost]

I know this was posted a long time ago but so happy to not feel alone. My daughter has had this issue since she was 3 and it has never gone away. It is so bad that when she finally goes we can't even flush it. Over the years it has become a control thing I thought. She leaks and doesn't care. She hides her dirty underwear all over the house. The smell never goes away. Over the last year it has gotten really bad. She started to use her poop to write on the bathroom walls at school and at camp. She has no friends (not that I blame them). My husband (her step dad) is done. Her behavior is horrible. Everything she says is a lie and she doesn't care about punishment. Today I got home and she had poop running down her leg through her pants and wanted to eat dinner that way. Yes she has been diagnosed with ADHD and do not medicate as she had very bad side affects from the 6 different medications we tried for 6 years. It seems that when she turned a teenager that it got worse. I cannot even stand to have her around me. When she comes to hug me I cringe and pull away as I don't want poop on me and the idea she would do that makes me discussed. We have done the doctor route the medications (when I can get her to take them) and nothing helps. She said she doesn't want to use the bathroom because it's gross. Yet it's ok to crap in your pants. I am thinking of commuting her for a evaluation. Also she has become violent with my 2.5 year old and because of her behavior and lies we now have DCF in our lives. I do love her but just want to give up and my husband as I said wants her out and I cannot blame home. Any advice would be great.

 

[Rannveig]

Dear Pooped,

Others will be along with more expertise than I on your daughter's particular problem, but I just wanted to welcome you here and offer my sympathy. My own daughter has gastro- problems -- not encopresis but debilitating in their own way, so I do understand the frustration, as diagnoses seem very hard to come by in this area. Has you daughter's pediatrician offered an opinion? Have you been to a GI doctor with her? My advice would be to explore physical diagnoses and make sure you rule those out before going exclusively the psychiatric route. That said, going the psychiatric route is essential, as clearly what she's doing with her poop is very disturbed. The question is which comes first, the physical problem or the psychological problem? If she can't physically control her defecation, maybe it's driving her crazy. Or maybe she has a developmental disorder or mental illness that's causing her to withhold and then act out as she does. She needs a thorough medical work-up. As long as DCF is involved, can they help you to get her that? You sound like a good person, but that doesn't mean you can figure this out on your own. I would hope DCF could be an ally, not an antagonist.

Above all, though, I think you need to protect your toddler. Violence toward the toddler is unacceptable. If I had a child in the home who was being abused I would be looking to get the abuser out of the home. That doesn't mean you don't love your daughter, just that you need to perform triage. Residential treatment for your daughter may be the best option right now. Others here can opine more knowledgeably on that.

Good luck, Pooped. You're kind of used to it by now, so let me tell you from the outside: this is genuinely an absurdly difficult spot you find yourself in. But you will get lots of help here. And I hope you can be kind to yourself.

Sincerely, Rannveig

 

[A dad]

There is a expression"do not do to other what you would not like them to do to you" which I taught my sons to live by. This expression does not work for everyone for example do not stink in front of others if you do not like to smell the stink of others. The problem is that some people are not bothered by any smell to put it simply be it their or others. There are people that are lets say really out of touch with the world or like really weird and disgusting stuffs. Lets say it works only if you are in certain parameters it does not work for my youngest since that translates like this if I do not bother you, you do not bother me.
In this cases is I am not bothered that you stink you should not be bothered that I stink which takes to the point everything has exceptions from the rule.

 

[AppleCori]

Hi POAL,

I don't have any experience with this, thankfully, but I do want to welcome you to the board.

How does she do in school? Any diagnoses other than ADHD?

Have you gotten any answers from the medical professionals?

If you have exhausted the medical route, I would definitely try the psychiatric.route.

One thing is for sure--this can't go on. I feel so bad for all of you.

Please stay with us, and start a new thread.

Apple

 

[InsaneCdn]

My daughter has had this issue since she was 3 and it has never gone away.

I'm going out on a limb here. But the problem as stated may not be "the" problem, but rather a symptom.
What was going on in her life at about age 3?
The reason for asking is that at that age, she may not have memories that she can recall, but her behavior could as one possibility be a sign of abuse when she was very young. In which case, trying to deal with "the problem" only makes it worse - you need to get to the bottom of the real problem. Your average therapist doesn't have what it takes.