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Unstable bladder?

post #1 of 17
Thread Starter 
We took ds to the pediatric urologist, because he wets through his pullups at night, but mostly because he is having occasional daytime accidents. Even when he doesn't actually get completely wet, he still seems to leak a little during the day. We have been relating it to his sensory issues.

The Urologist says he thinks it's unstable bladder. And he prescribed ditropan XL. I really don't like what I hear about the side effects. Ds is constantly running around, gets hot and sweaty. I'm concerned that this says that he needs to be very careful of that. He's 9! He needs the exercise to be able to sleep and to just work off some of his extra energy.

I'm leaning towards a just wait and see how things go at school attitutude. But then I'm concerned that he is going to end up smelling like pee at school, which happened a few times last year and he's already having social issues because he doesn't pick up on social cues. That would just make things harder for him, because when it happens, he doesn't even know it, so he doesn't change or anything like that.

I just don't know what to do, because the poor kid is going to a new school this year, and the leaking seems to be worse, along with all his other sensory issues, when he's nervous. So we do tend to see an increase in it at this time of year.

I hate putting him on meds, but I'm so torn. Any advice?
post #2 of 17
Has any testing been done or plan to be done?
post #3 of 17
I agree with the testing. did they test for a UTI? that can cause bedwetting increase.
post #4 of 17
Thread Starter 
Quote:
Originally Posted by KatWrangler View Post
Has any testing been done or plan to be done?
Quote:
Originally Posted by wonderwahine View Post
I agree with the testing. did they test for a UTI? that can cause bedwetting increase.

They didn't do anything beyond a regular urine test. I guess he just felt that that's what the symptoms matched. I just wish that we had more to go on. I should have gone too, but I thought ds might be more comfortable with just dh there, instead of me and the two other boys. But I really wish I had gone.
post #5 of 17
Call the Uro tomorrow and ask to talk with the Doctor. Make sure you have a list of questions ready to ask.
post #6 of 17
they should do a test to make sure the bladder is emptying properly and completely when he voids. Good luck on everything mama
post #7 of 17
The test is called urodynamics...

I just wanted to let you know that I've taken Ditropan XL (10 mg, I believe?) for long time periods in the past (don't now just because I'm nursing) and I haven't had any trouble.
post #8 of 17
I would definitely push for the urodynamics study. My concern would be WHY is he having the unstable bladder. Is it from not completely voiding, constipation, uti, bladder pressures, bladder contractions, etc? There are a number of things that can cause it.

Ditropan can help a lot of these problems, but there are other solutions that you can try for some of them. For example: If incomplete voiding is his issue, you might try bladder training (basically teaching them to try and go every few hours even if they don't "feel" the need to), which will keep the bladder more empty, causing less leakage.

Dd is too small to know for sure, but they believe that she doesn't feel the sensation to go. She had a urodynamics study done at 11 months. We tried Ditropan on two different occassions, and it caused her to become terribly dehydrated, and we took her off both times.

I think most kids tolerate Ditropan pretty well, but if you are trying to avoid medicating, I think your best bet is to find out what the cause is.
post #9 of 17
I'm sorry you're having to deal with this. I'll add to the voices to suggest pushing for urodynamics (may also hear them say CMG or VCUG or other specific test names as well).

I can understand your concern about the medication and that is why I would push for further testing - to help you better make a decision about it. What Ditropan does is to quiet the activity of the bladder. So for my daughter without the medicine her bladder spasms nearly non-stop. Now her bladder sphincter is very strong so she mostly stayed dry (before the meds) until she would massively pee. The problem is that over time that constant bladder spasming causes the bladder to lose its elasticity and it's ability to hold urine. That can lead to more incontinence and more urine refluxing up towards the kidneys. So for me there was no choice with the medicine. If she doesn't get it she will end up with serious long-term consequences. Knowing that info helped me in dealing with her having to take the medicine.

Oh and they have a ditropan patch now. I think Judejude mentioned it last year. We've just been starting it with my daughter. She doesn't like the removal part, but it's nice to not have to stop her 3 times a day to take her medicine (which she is really great about taking). Unfortunately it is ridiculously expensive.
post #10 of 17
I agree you need to know what is causing it.

I've never heard of an "unstable bladder." I wonder what the technical dx he is giving is. I agree with Anne that you should call back to speak to the uro WITH questions written out.

That sounds like a neuro issue which given his other issues, promotes it to more important...like does he have seizure activity? motility issues? etc.

And
post #11 of 17
Gabrielle is on Ditropan (well the generic form of Oxybutynin). It does make her hot. We have to be careful when we give her a dosage and then go outside. She is on 1cc 3 times a day.

There are other drugs similar to this available that doesn't cause over heating. I know there are several kids on the lists I am on, that use them for the summer time. Then they switch back to Ditropan in the fall/winter.
post #12 of 17
I have a bladder disease and have taken just about everything under the sun. The one thing I will say about Ditropan is that in some cases, it can cause further urine retention. It was a very painful drug for me to take because of that. So if they are prescribing it without the urodynamics test, then I would worry about that sort of possible side effect.

I don't know what else you are dealing with, but I'll toss this out there: my DS (the one with OCD/anxiety/SPD) went through an eight month period between five and six where he had bladder issues. Accidents, bed wetting, having to pee 20-30 times a day, etc. With my bladder history, it freaked me out a bit. We had him checked out and he was fine--his therapist identified it as an extreme anxiety reaction. My father died a week before it started, and DS was dealing with a new school, etc. I guess all that coupled with a common growth spurt from 4-6 that can leave the bladder temporarily smaller than the rest of them makes it not an altogether uncommon anxiety/trauma reaction.
post #13 of 17
My DS did this when yeast and food intolerances/allergies were a problem. In fact, so did I! I had interstitial cystitis which correlated when I had thrush while bf'ing. Gut healing diet and supplements cured it.

An organic acids urine test would be your best bet.
post #14 of 17
How do urine organic acids help identify bladder problems? I've only heard of this being relevant to metabolic disorders.
post #15 of 17
just a heads-up, i took ditropan as a child too and it made me lose weight/not gain. i got very very skinny, 34 pounds at 5 years.

it ended up not helping much, either. i had neurogenic bladder, though, and eventually needed surgery.
post #16 of 17
Quote:
Originally Posted by mamaverdi View Post
How do urine organic acids help identify bladder problems? I've only heard of this being relevant to metabolic disorders.
Because metobolic issues (ie. gut is where the intestinal flora resides and neurotransmitters are made) can effect the bladder. And the exo- and endotoxins are voided thru urine, which greatly irritate it, and can produce spasms and wearing away of lining. Natasha Campbell McBride MD author of the GAPS Syndrome also talks about this connection.
post #17 of 17
Thread Starter 
Thank you so much for all the info. I decided not to do it without the urodynamics test. I think that's the word, I keep saying the aerodymics though, and perhaps he needs a test on that too since he didn't do so well when he jumped off the stairs and broke his arm.

So far he's doing great. There is still the nightwetting, but he doing great at school during the day! : So unless it gets bad again, I think we're going to forgo further testing for the moment.

He does have food sensitivities to gluten, dairy and eggs. I never noticed whether it got worse when we let him cheat, but I wasn't looking for it. I'm going to keep my eyes on that now, though.
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