Constant urination- interrupiting life

[lboll]

Dear all,

 

I've read a few postings throughout my short PANDAS journey on frequent urination. Over the past 2 months, I've noticed that he has been urinating more and more often.

 

Over our vacation last week, the urination was out of control. My son (10) was urinating so often that he started going directly into his underwear and foregoing the toilet all together. He would walk, stop, grunt, and then urinate very small amounts at a time.

 

We had him tested for infection; none showed up.

 

So what now? My son is autistic so we can't just say, "Hold it". He doesn't understand that.

 

Thanks for any and all suggestions.

[peglem]

Dear all,

 

I've read a few postings throughout my short PANDAS journey on frequent urination. Over the past 2 months, I've noticed that he has been urinating more and more often.

 

Over our vacation last week, the urination was out of control. My son (10) was urinating so often that he started going directly into his underwear and foregoing the toilet all together. He would walk, stop, grunt, and then urinate very small amounts at a time.

 

We had him tested for infection; none showed up.

 

So what now? My son is autistic so we can't just say, "Hold it". He doesn't understand that.

 

Thanks for any and all suggestions.

My daughter also has autism, and the urine thing has come to be a sure sign that a PANDAS episode is imminent. She has had episodes where she just pulls down her pants and pees on things or just on the floor. She went through a few months where she was afraid to go down the hallway where the bathroom is located....But these pee anomalies always go away as she gets better. He may test positive in a few days, or you may be checking in the wrong place. If not on abx already, I think its worth a try to see if it helps (but your doctor probably doesn't respect my opinion!).

[lboll]

Dear all,

 

I've read a few postings throughout my short PANDAS journey on frequent urination. Over the past 2 months, I've noticed that he has been urinating more and more often.

 

Over our vacation last week, the urination was out of control. My son (10) was urinating so often that he started going directly into his underwear and foregoing the toilet all together. He would walk, stop, grunt, and then urinate very small amounts at a time.

 

We had him tested for infection; none showed up.

 

So what now? My son is autistic so we can't just say, "Hold it". He doesn't understand that.

 

Thanks for any and all suggestions.

My daughter also has autism, and the urine thing has come to be a sure sign that a PANDAS episode is imminent. She has had episodes where she just pulls down her pants and pees on things or just on the floor. She went through a few months where she was afraid to go down the hallway where the bathroom is located....But these pee anomalies always go away as she gets better. He may test positive in a few days, or you may be checking in the wrong place. If not on abx already, I think its worth a try to see if it helps (but your doctor probably doesn't respect my opinion!).

 

Thank you for replying,

At the time the urinating got terrible he was on Zithromax, but only 250 mg. every other day. My doctor was afraid to try a higher dose. We took him off the antibiotics as the doctor was fearful it was causing the problem. However, that wasn't the case as he is still doing it and he's been off the Zith for a week.

 

I've got an email in to Dr. T for a consult. I think it's time to stop messing around with this and get a doctor who really knows what's going on.

 

Thanks again.

[simplygina]

Dear all,

 

I've read a few postings throughout my short PANDAS journey on frequent urination. Over the past 2 months, I've noticed that he has been urinating more and more often.

 

Over our vacation last week, the urination was out of control. My son (10) was urinating so often that he started going directly into his underwear and foregoing the toilet all together. He would walk, stop, grunt, and then urinate very small amounts at a time.

 

We had him tested for infection; none showed up.

 

So what now? My son is autistic so we can't just say, "Hold it". He doesn't understand that.

 

Thanks for any and all suggestions.

 

My nonPANDAS son has had trouble with eurinesis (sp?) in the past. He suffers from severe constipation and starts to wet himself a little here and there if he hasn't had a BM in 2 days or so. He has bowel motility issues and in the past he had a lot of problems with encopresis as well due to the constipation, so I have to make sure he goes every couple of days so we don't head back down that road. If he can't go on his own I give him a glycerin suppository and it works every time. As long as he is having regular BMs, the wetting stops.

[jewels]

Dd gets constant urination issues with every onset. She would go to the loo every 10 minutes. When my dads MS flares up he has the same problems. Dads MS Dr said its a Neuro/reaction symptom. I thought dds was some sort of ocd.

 

My friends little girl (non-pandas) has a on off constant urine issue, and she was dx with bladder reflux. She's been doing exercises to improve muscles etc and this issue has resolved.

 

I wonder if the brain signals that are affected with MS to develop this symptom are in the same area that is affected with PANDAS children.

 

Jules

[LNN]

iii. Dr. Swedo webcast Fall 2008 autism conference

Progress and Pitfalls & Notes on PANDAS

http://www.autism.com/danwebcast/video-lis...erence=SanDiego

 

Here's a link to a presentation Swedo gave at a DAN conference. The link takes you to a list of presentations, so you have to scroll down about 8-10 down on the list to get to this particular presentation. The first 30 minutes is about her PANDAS research and what specifically is happening to cause the urination urges. It's a fascinating presentation.

 

Now for the practical issues - when my son had this problem, we resorted to pull-ups for a day or two. They make them for kids up to 100 pounds. It at least takes care of the mess issue and keeps you from having to stop life every 2 minutes to find a bathroom.

 

In school, the teacher gave him popsicle sticks. Every time he had to go, he gave her a popsicle stick. When he was out of sticks, he had to wait for a certain period of time before he could go again. The teacher was sensitive to the risk of an accident, but we used this as things got a little better and there was more of an OCD component rather than a physical need (i.e. he only had a few drops inside, so an embarrassing situation wasn't a big threat). The sticks introduced a "delay" tactic used in ERP and helped him feel a little in control of choosing when to go but also limited the interruptions in class. When he was really sick, he might get 15 sticks. As he got better, he only got 5 etc...

[mom2gsd]

My son does the same OCD thing with pee and poop, which leads to the OCD handwashing that follows....seems to have a constant urge.

[MichaelTampa]

Dd gets constant urination issues with every onset. She would go to the loo every 10 minutes. When my dads MS flares up he has the same problems. Dads MS Dr said its a Neuro/reaction symptom. I thought dds was some sort of ocd.

 

My friends little girl (non-pandas) has a on off constant urine issue, and she was dx with bladder reflux. She's been doing exercises to improve muscles etc and this issue has resolved.

 

I wonder if the brain signals that are affected with MS to develop this symptom are in the same area that is affected with PANDAS children.

 

Jules

 

 

I have heard this can be an issue with Parkinson's, so a number of neuro conditions seem to have this. I have this as well, about 20 times a day. In my case, nothing to do with OCD, simply gotta go. There was a thread a while back, working on a long list of PANDAS symptoms, and some parents were reporting that frequent bathroom trips were related to OCD, so, apparently that can happen to. Goodness, every 10 minutes--makes my 20 times a day sound not too bad--yikes!

 

Michael

[jewels]

My poor little lady was so exhausted one day that she kept asking me to carry her to the loo. Then when daddy came home she asked him to build a toilet in the family room-bless her.

Its at these times that you feel quite helpless as a parent.

[lboll]

I can't thank you all enough for your responses to this. This is the very first time I've had this happen with my son, so it is quite scary. It's good to hear that it's common, although I know the hardships you're all enduring.

 

I'm fascinated by the reference one of you made regarding MS and another with Parkinsons. I see a lifetime of research ahead of me.