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Encopresis and my 5 year old son

My 5 year old son has been having encopresis issues for a couple years and they seem to have gotten worse lately. I think it was misdiagnosed for some time because he has had severe reflux since he was born along with a milk protein allergy. He has had chronic GI and sinus problems. I'm very worried because he is supposed to start kindergarten next month! He is also supposed to have an EGD, colonoscopy, rectal biopsy, MRI of spine and 24 hours pH probe next week. I'm worried that these tests aren't going to tell us anything new. He has been on Miralax and Benefiber for the last 6-8 months and his KUBs continue to show partial bowel obstructions. His abdomen also gets very distended in the evening and he complains of abdominal pain. I'm just very frustrated!! We have remained very positive with him, but I am at the end of my rope!! I feel like he is purposefully not going when we know he needs to go, but he flat out refuses!! Any advice out there?? He is a very sensitive child and is tired of talking about it. He actually wants to have the procedures to fix him. He frequently apologizes and says he trying. Breaks my heart!
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Avatar universal
Hi-
We read your posts about 20 days ago.  I'll spare you our story of our son since it's SO much the same except for the expensive therapy sessions we went to when we believed the problem might be emotional.  I ordered the primadophilus the day I read this, to be delivered 2 day air.  Since my son started the primadophilus, and we started following all the instructions in this pamphlet about encopresis from Australia, everything has been soooooo much better!  We made no adjustments to his diet other than the Primadophilus.  I think he has a while to go before the nerves wake up and he can feel again, and he is still scared of pain and wants to hold it  -some habits are tough to break.  But if we get him to eat a good sized breakfast, get him on the toilet 20 minutes later, he has a normal bowel movement 6 out of 7 days and we haven't had an accident in 3 weeks.

I want to give a strong plug for this pamphlet.  Reading it with our son, putting ourselves in the "coach" role, and getting us on the same side vs the personfied "Sneaky Poo" was a real turning point for all of us emotionally as well.

http://www.narrativetherapylibrary.com/img/ps/spoo2.pdf

Thank you for this post!  You have lifted a huge weight off our family!
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Avatar universal
Glad to hear your daughter is doing well with almond milk and probiotics. We just switched to almond milk for my son also since I found out too much soy can cause problems. We struggled for 3 1/2 yrs and it is so great now I almost forget what is was like. It was such a family problem that it really hampered or dampened a lot of plans we had. I always had to make sure there was a bathroom nearby and for over 2 yrs traveled with a potty chair in the back of our car, which he was really way too big for, but I needed to make sure I had one in case nature called for him if it had been several days etc.  I still have to be diligent with his dairy intake as far as cheese and milk but he used to not be able to have any without having problems a day or so later. There used to be so much stress in our lives revolving around it. Amazing that one little pill every night made such a huge difference for him. Wishing you continued success with your daughter.
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Avatar universal
I read your post and it could have been written by me.  Our experiences are so similar.  My daughter (who is 4) has been dealing with encopresis for two years.  We just recently discovered that dairy seems to be the problem for her as well.  We switched to almond milk and put her on probiotics, and the difference is remarkable.  She is now having one or two regular BMs daily (on the toilet and with her actively pushing!).  I haven't had to clean out any dirty underwear in almost a month.  We are all so thrilled.

We tried Miralax with absolutely no success.  She ended up with diarrhea, even at the lowest possible doses.  I tried to explain to the doctor that it wasn't working, but he just insisted she needed more Miralax not less and needed to sit more.  After doing some research on my own, I decided to try removing dairy from her diet.  Once we did that and added the probiotic,  she's been a different kid.  
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Avatar universal
BTW, did you hear anything back from all the tests he took? Just curious
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Avatar universal
Oh, one more thing. By quick, I mean I noticed a change within several days of him taking the probiotic pill every night (night since it works best then inside one's body). The biggest change came within 2-3 weeks of him going every 1-2 days and he's now going regularly every other day which is a huge change from the 2-3 to sometimes 4-5 days without going. He's never had Miralax or Dulcolax. Sometimes when it was bad I would do glycerin suppositories but that didn't ever help much either. The probiotics has been the only thing that worked.
Hope this helps since it worked for us. Good luck.
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Avatar universal
Your son sounds so similar to mine when he was that age. When he started kindergarten 2 yrs ago, I purposely spent the day hanging around in the area of the school, since I left my cell # with the teacher and expected her to call since he hadn't gone for 3 days. So I know exactly what you are going through. I too found out, on my own, that he has a reaction to milk. Never did when he was a baby/toddler that I noticed, but when he started having the issues I became aware of it. He"had" encopresis. Notice I said HAD. And as MaryFran said, it has been quite a long road, but once I found what worked it was very quick. Let me explain.
It started shortly after trying to potty train when he was 3 yrs old. I put potty training off for a while and then when he seemed ready again, we accomplished it. But then started the holdings. Mainly to do with the fact that he had more important "things" to do ~ like playing. Well I did some research and started with flaxseed in all-fruit smoothies, totally changed his diet to much more healthy, whole grain foods etc., but to no avail. He still had encopresis. I found dairy products to also be a trigger to set him off. So I switched him to soymilk and watched his dairy intake, though he loves cheese. This helped somewhat and I was now giving him flaxseed oil in all-fruit smoothies. When I took him in for his 5 yr well check, his Dr chided me for switching him to soymilk and told me he could develop osteoporosis if I didn't give him milk. I told him about his encopresis and he told me to put him on Miralax. I researched Miralax and Dulcolax and decided against it. But I did go home and gave him milk. He immediately got plugged up again, confirming the fact that milk is a major culprit besides him training his muscles to "hold it." We would spend SO MANY hours in the bathroom when he would go for 2-3 to 5 days without having a BM. I switched him back to soymilk. My sister suggested YoPlait YoPlus yogurt since it had probiotics. We tried it and it seemed to work and get him regular. Well, he tired of having to have a yogurt everyday, so I did more research about probiotics and found a chewable probiotic children's pill that he now takes once a day, at bedtime and it's NIGHT AND DAY in the difference. He is now regular and has been for 1 yr. It is such a relief to know our problem is solved. The pill is made by Nature's Way and is called Primadophilus Kids and it's carried by Sprouts and SunFlower Market where I live, but you can call them and find out if they sell it near you. 1-800-9NATURE. I thought he was going to have to live with this problem for the rest of his life but thank goodness I found out about this after only 3 yrs, which is still a long time to have to have dealt with it. I'm hoping this information helps someone else out there besides resorting to a drug that doesn't really treat the problem but just makes a person have to go to the bathroom. I am in no way affiliated with Nature's Way and I'm sure there are other probiotic chewables out there for kids. Just hoping someone else reads this and gives it a try if your child is suffering from this problem. It worked for us and hopefully it will work for you.
** Just from looking this up again, I've noticed some people mention a possible relation with wheat products. I'm going to monitor my son and see if he has a change in his habits when he has more wheat, ie bread, pasta**
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Avatar universal
I don't want to discourage you, but encopresis can be a long long road to recovery.  My daughter is 8 and has been struggling with it since she started training around years old.  Don't push him, try to be supportive and encouraging.  Just recently have we been starting to have success with my daughter.  We didn't go through all of the testing you mentioned above, however, we have tried many stool softeners and laxatives.  At one point she was taking 6 squares of chocolate exlax per day.  Reward charts seem to work best.  Its a weekly chart where we keep track of progress, she earns points and will receive a reward at the end of the week based on the # of points achieved.   Therapy was also very helpful.  Lately we've been able to get her to sit on the toilet while she plays her video game.  That seems to be working but only at the suggestion from my husband....If I bring it up I'm greeted with an immediate "I don't have to go".  Patience is the key...also on the advice from our therapist we push the "personal responsibility" theme.  My daughter cleans up her own soiled underpants and this also has helped promote success in the toilet because she doesn't want to clean out poopy pants.  Hope this helps
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