My daughter is almost 15. She does great in HS and is in a college-bound tract. She has Aspergers and when she started kindergarten, she started having toileting accidents at school. She was diagnosed with a small, muscular bladder that she has 'grown into'. She has a bladder capacity of 15 oz. At school she drinks during 3rd and 6th period and uses the bathroom afterwards. This method has 100% success in keeping her dry.
Home is less structured and she has daily accidents. She's takes MiraLax and Benefiber to treat constipation and takes Vyvanse and Zoloft for focus and mood, and lactase with dairy. (She has occasional soiling accidents.) She doesn't always feel when her bladder is full nor does she feel when it leaks. My concerns: (1) Will she be able to tell when her period is happening when she starts getting periods? If she can't, how is best to manage this? (2) With a 10 year history of accidents, what can be done in the next 3 years so that she will be able to attend college? Or within the next 9 months so she can go to France next spring with her class? When she wears absorbent products, she'll use them instead of the bathroom and never thinks to change them until someone points out that they've leaked.
She has ODD and some OCD and melts down when she's told she needs to change her clothes. She smells bad much of the time when she's home. Her accidents tend to be just an ounce or so, which makes it difficult to tell she's had one. Over the years, she's mastered hiding them: long shirts, backing away from people so they can't see her bottom. Do you think that biofeedback might help? What do you think it will take to break this cycle of wetting? Her urologist said that her problem was 100% behavioral, but she had told him she always knows when she has to go which wasn't true. She's refused to try using a wetting alarm. She sleepwets too. She does see a therapist. Ditropan had no effect. Could an antiprostaglandin help?
This strikes me as a behavioral problem also, and I’m not surprised that you haven’t found medication alone to be successful. It sounds generally like her hygiene skills aren’t where you’d like them to be. There are some basic skills and tolerances that need to be developed if she’s going to be successful. She needs to be able to tolerate changing soiled clothes and bathing, there’s no reason she should be smelling badly when she’s at home. It also seems like she needs work with the entire skill set of feeling when she needs to urinate, toileting appropriately, noticing when she is soiled, and changing clothes and washing up when that happens. Given where she is now, and the fact that she can have these melt downs, getting her there can seem like a huge challenge, but it’s entirely possible. In my experience, programs to teach appropriate toileting skills have a very high success rate. My first piece of advice is to seek out a board certified behavior analyst in your area who has experience with children like your daughter and teaching toileting skills.
Typical interventions involve starting with a very frequent schedule of prompting the child to sit on the toilet and produce and using potent reinforcers to motivate her. The first thing to do is to identify the reinforcers. Pick out some of her favorite things and activities, sit down with your daughter, and work out a schedule for her to earn them for being dry and clean. Start small and work toward bigger things. Maybe some favorite books at the end of the night or some time playing on the computer if she stays dry all evening. Maybe set a watch for her to come check with you at 15-minute intervals. If she would be into it, she could collect her own data, giving herself checkmarks or whatever for each dry time and track her improvement over time. Don’t make a big deal about mistakes, those happen, but make a big deal about successes. If she urinates relatively infrequently, maybe give her some things to drink so that she has more practice feeling what it’s like to need to use the toilet and then toileting. She needs to learn how to monitor herself, and programs like this can be very successful in teaching that.
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