Desperately need help with toileting issues ....
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Anonymous
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I'm the OP awakening this topic again, mainly to vent. We are five months further down the road, and I've done everything. Behavioral charts and rewards. Weekly sessions with a behavioral psychologist. Daily miralax and monthly colon cleanses. Nothing helps and everyone acts like I must be the worst mother in the world to not have solved this problem by now. Some days he has 5 accidents in a day. When you see the mom at Target with the kid with the wet pants and say "Your son wet his pants" and the mom says "Yes. He did."-- that's me. If there was a cliff readily available, I'd walk off it.
The only thing I haven't tried is the PP's suggestion of the anti-depressant. I'm trying to get on a wait list to see a pediatric psychiatrist. I'm not super thrilled with the pediatric urologists at Children's and we seemed to have tapped out their advice -- if anyone has a urologist they really like and who is some kind of miracle worker, please let me know. |
Anonymous
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OP, it took us months and months (like 6+) after we got the poop under control for my 4.5 yo DD to PT herself. We kept on the scheduled sits and sticker chart and, at some point, it clicked. She was starting to hold, which made things even worse for us, but the point is that she has been in underwear for a month now, and I am shocked and amazed and relieved. We continue to be relentless with the poop monitoring because the pee accidents come if she is backed up (she has reduced motility from hypotonia). I know you think the problem is pee -- and maybe it is -- but it doesn't hurt to, um, attack it from both directions. If you haven't tried a structured bowel program like UCanPoopToo or Soiling Solutions, now might be the time.
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Anonymous
This. And see if you can get it written into his IEP/504 that the teacher remind him. My kid, at least, is far more likely to do what the teacher says than what I say. |
Anonymous
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OP again -- the UCanPoopToo and Soiling Solutions programs are at least a new suggestion. Has anyone used either of those? At this point, I tend to think that the poop and colon stuff is not the major issue. We've been using daily Miralax for over a year and have done many, many colon cleanses, both with Miralax and with enemas. He usually poops twice a day and they are usually loose like oatmeal, which is what the urologist said was the goal. I can't really up the Miralax because then he does have poop accidents during the day.
If he ever gets over this and leads a normal life, I feel like he's sure to write a book about how his mother was obsessed with his bowel movements. Sigh. This is not the mom I wanted to be. |
Anonymous
This is all that ever worked for us, along with him wearing an alarm watch to remind him it was time to go. Eventually, it becomes habit, but it can take a very long time. Hang in there. |
Anonymous
OP - I totally sympathize. My son sounds very similar to yours and I am not the mom I want to be either. For 3 years I have grilled my son daily about "did you poop" and "did you pee" and "let me see that poop" and I can't believe the things I have said and done  So I totally get it, I really really do.
First, we had a terrible experience with one of the urologists at Children's. Truly awful. Dr. Kalloo is the head of their wetting and soiling clinic so she may be more helpful (assuming you haven't seen her already). Mary Micker is a nurse who also works in the wetting and soiling clinic and I have heard she is good too. We have not seen either of them so I can't say first hand, but it may be worth a try. Second, you may want to try a bladder relaxing medication, you will need someone to prescribe it, of course. We had my son on Detrol for a while and it did help with the wetting, although one of the side effects is constipation so it sort of defeated the purpose. But if you can maintain a clean colon while on Detrol or Ditropan, you may have good success with it. Third, we use a vibrating watch to remind my son to go to the bathroom every 2 - 3 hours. It works when he doesn't ignore it! It may help just get your son in the habit of going at certain times of the day. Ask your son's teachers to remind him to go at school. Fourth, if you suspect any food allergies or sensitivities, I would suggest getting tested and/or trying an elimination diet. The things that tend to constipate and cause GI problems which can then lead to wetting problems are dairy and gluten. It also can't hurt to throw a good probiotic in his diet too. I know you said you feel sure that the constipation is gone, but we have also been aggressively tackling my son's constipation for a very long time and he has always been very backed up whenever he has been x-rayed. Personally we are done with Miralax, all it did was give him very loose poop and did not keep him cleaned out. I think we are better off having more formed stools and giving the rectal muscles something to push against. We use suppositories if it's been more than a day since the last poop to make sure he's emptying regularly. Best of luck to you. I think we need a support group! |
Anonymous
| Thanks so much. I was not crazy about Dr. Kalloo at Children's--- Who did you end up using for the prescription? At this point, I would go to Philly CHOp or even Boston Children's to see someone decent, although that doesn't really seem sustainable for follow-up care. |
Anonymous
| This is 09:32 again. We took our son to nemours in Wilmington DE after our totally miserable experience at childrens. They prescribed the detrol. It's about 2 hours away, so it's possible as a day trip. I'm very sorry to hear you weren't impressed with dr kalloo, it seems there really is no one in the DC area who gets this. There is also a wetting clinic at Hopkins in Baltimore, closer than Wilmington or Philly. Their website says they work with psychologists as well as urologists and gastros, so that may be helpful for you. |
Anonymous
This is the PP whose friend's child is taking the anti-depressant. I emailed my friend for the name of the doctor and the anti-depressant so check back here. Maybe you can call the practice and ask for a referral for someone closer to DC who is familiar with this route of treatment. |
Anonymous
| This is the PP again... to the extent that you mentioned getting an appointment with a pediatric psychiatrist re the anti-depressants... it was not a psychiatrist who prescribed them. It was a pediatric urologist who did in conjunction with the Flomax (ie, the anti-depressant to trigger the recognition of the impulse to go and the flomax to empty the bladder). My friend said this was a fairly new treatment and the urologist was a leading doctor on the east coast. So I don't know that a psychiatrist would be able to help you on this issue. Will post back when I hear from my friend on who the urologist is or you can post an email and I can get in touch with you that way. |
Anonymous
| OP, I suggested Soiling Solutions and UCanPoopToo. There is a Yahoo group for parents dealing with encopresis -- it's called encopresis kids. This is such a hard thing and there is no simple way out the other end of it (pun intended) but there is a community of physicians working hard to help families dealing with it. |
Anonymous
| who did you see at nemours in Wilmington to get the detrol prescribed? |
Anonymous
Amanda Mandel, she's a nurse practitioner. |
Anonymous
| Hi, OP. In case you are checking back, the pediatric urologist that prescribed the anti-depressant to my friend's child is Israel Franco with Pediatric Urology Associates. Maybe you can get a referral from them for a urologist in the DC area. |
Anonymous
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My DD has the same issues for years. We started toilet training her four yrs ago, since she was 3. At that time, my husband was joking "she would still pee in her pants when she's in first grade." Well, he certainly jinxed her!
Most of her potty accidents are right in front of the toilet (you would think she can hold for one more second to sit down and void). She has at least one bowel movements every day, so I don't think she's constipated. She's on gluten, dairy, sugar free diet as well. We tried so many different things through her ABA programs to toilet train her. I'm running out ideas. We're going to see her pediatrician in a few days. What kind of test should we do to rule out medical issue (e.g. abdominal x-ray?) |