Tuesday, October 15, 2013

31 for 21: Day off for exercises

Mommy reporting: Today we had an appointment with a PT who specializes in pelvic floor issues.  Typically that’s for older women who have bladder issues. But I took my almost-7-year-old to see her.

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Maybe I should back up a bit…  I’ll try to summarize as simply as possible.

Braska is very verbal. We thought that since she could tell us “I need to go potty,” when she was 2 we would be knocking this potty training thing out with no problem.

And it has not gone that way. At all.

Braska will be 7 next month and, though she has success on the toilet sometimes, is no where near consistent.  We’ve tried scheduling, and every possible “sure-fire method” including those deemed as especially for kids with DS.

I’ve been convinced for a while that something wasn’t clicking, either with the right sensory messages getting to her brain or something medical.  But then she’d do ok for a day or so, and I’d think we were past it.

But as we approach her birthday and still spends what feels like zillions of $$ on pullups, it was time to go to the next step and have her evaluated.  So I took her to urology at SLCH last week.

Turns out, after ultrasound and different relaxing methods tried in the office, that Braska isn’t able to empty her bladder. This, in turn, means that she is not ever getting the sensation of the bladder filling and then learning that it means it’s time to go to the potty.

So when she does tell us, it means she’s going right then (which happens a lot) or there’s some other feeling she’s getting, which leads to frustration for all of us when we go in there and nothing happens.  She would often say adamantly, “I do NOT need to go, Mom!!” and then she would start to go before she stopped talking.  Several things like that which made us believe she didn’t get the right signals.

Bottom line at urology office: It’s a fixable problem, and apparently not a difficult one.  I kicked myself that we didn’t do it earlier, until the urologist said that she wouldn’t have been a candidate for this treatment before, she’s just now the right age. So I gave myself a break on the kicking…

We got orders for pelvic floor therapy with a specialized PT, and we also started her on a medication to help her empty. We have returned to miralax as well to be sure that all evacuation avenues are running as they should be, since the ultrasound showed that there was a lot hanging around in there too.  She’s “regular” so we thought that was all good, but apparently that wasn’t the whole story.

We also ordered a watch from Potty MD on recommendation from the dr, to help Braska get her own cues (vibrating watch every interval that we set it for) to remind her to go after we’ve made sure her body is doing it’s job.

So far, we’ve seen improvement, and I’m glad. 
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So yesterday we went to the PT, and she gave us some exercises to do with B every night.  And we have a new position on the toilet as well…  against my previous advice to B, to sit with legs open more, and lean forward.  Oh, and the feet MUST be on a stool, not just hanging off.  That was new also to me.
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So we’ll try the stuff, we’ll do the exercises, and I’ll keep praying it comes to be.  Dr says she could “be done by Christmas” and I laughed out loud.  Can’t imagine, but hey, bring it on!  I would seriously celebrate with a party if we could accomplish that!!

And since I couldn’t coordinate my schedule to work well with picking Kinlee up and helping with lunch at her school and still manage to get Braska back to her school for more than a couple hours, we called it a day off for Braska.  She got to relax in the morning before the appointment, go see her “other school” friends for lunch and recess again, and I’ll take that every time.  I just love watching those kids get so excited to see her each time she visits.  Priceless.

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3 comments:

  1. Good report! So glad you have a new plan... how are the exercises going?

    Love,

    Papa beagle

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  2. Thanks so much for sharing. We may have to wait 2 more years for taking Tommy to the Urologist, but I think this maybe the same issue he is facing.

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  3. We took Ella when she was 5 to a urologist. They gave us some exercises, like blowing a pinwheel while going pee...that one made me laugh...and put us on Oxybuntin. I swear that drug was like a miracle for Ella. Within 2 months she was completely potty trained and staying dry 12+ hours a night! We did just have to go back on it for 2 weeks, she was having bladder spasms and going to the bathroom like every 10 minutes and having a few accidents but it seems to have fixed the problem! Good luck!!!!

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