Battles against terminal illness, anxiety, and life!

Facing It

We have come to the point where we can’t simply brush off the fact that Braden has an issue with holding his bladder.  He does well at school, but we are guessing this is because he doesn’t have much to drink there and is ushered to the bathroom routinely.  This is not to say we don’t ask and take him to the restroom at home all the time.  However, he also drinks much more here as well.  We can’t simply reduce his fluid intake, because that is a huge source of his nutrition.  We are left in quite a predicament.

The fact is that we can’t ignore the issue any more.  We can’t just continue to plug away with asking him to go, taking him, not making a big deal of accidents, assume he’s just being lazy about potty training, or anything else.  There is a real problem here.  He doesn’t appear able to hold it.  He will urinate without realizing he’s even doing it.  This leaves us, as his parents, left cleaning an awful lot around the house.  Today’s mission is stripping the couch and washing the covers on the cushions.  He’s had three accidents this morning, and it is 8:30.  That’s three accidents in an hour and a half.  He’s gone to the bathroom three times and had one sippy cup of milk. 

I put an email out to his medical team this morning to see what they suggest.  I think we may need to face the fact that he may never have complete control over his bladder. 

I am so saddened by this.  Please let there be something that can help.  This is a matter of my child’s pride.  A-T will rob him of so much, but please can’t he just win this one battle?

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Comments on: "Facing It" (4)

  1. Oh hon. This is so hard. I hope that there’s some thing that can give him (and him) a hand with this.

  2. I know there are meds that we use in adults to help with bladder control, antispasmodics, and anticholinergics, but I don’t know about use in children. Have you tried any exercises to have him go a little, stop, go a little, stop etc to try to build up the muscle control? Again, with A-T, I don’t know what can work.

  3. Awww Sweetie, I’m so sorry to hear this 😦 I hope the doctors are able to help figure out some way of dealing with this. Can you use pulls ups or good nights to help him feel like he’s still wearing underwear and maintain his dignity?

  4. Hi,
    My daughter (with A-T) never quite ‘dried’ out from potty training. We tried pads but they weren’t very dignified so we saw a specialist urologist who did a ultra-sound to check things were plumbed up properly (they were) and he then prescribed some medicine to take twice a day, initially at a very small dose which was extremely successful. After the followups we were told to try her off the medicine every 6 months or so as he thought her bladder was a slow developer. It made such a difference to her and although she took the stuff for several years eventually she’s better, although not perfect in that respect. (A brill side effect of the medicine was that it dried her mouth slightly – enough for her to be drool free for 3 years or so!)

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