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Urinary dribbling now incontinence during day/not night


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Hi,

I have searched old posts and now I am hoping someone might have something to suggest to me. I am out of ideas.

When the PANDAS started, we had some intermittent urinary dribbling during the day. A panty liner sufficed.

After first HD IVIG, everything remained the same.

We started Chinese herbs in addition to antibiotics/antifungals,antiparasitics.

Everything was really shaping up and then added artemesia and it all fell apart. urinary dribbling increased at this time requiring regular flow women's sanitary napkins. The panty liner no longer was adequate.

I stopped Chinese herbsd thinking they may be high in oxalate causing urinary issues to flare.

We had another HD IVIG and did Ibuprofen for several days with no relief to the urinary incontinence.

And today, the pads are no longer working. This is a child who has been potty trained for forever and also still goes on potty and pees and poops.

 

What is this???? Any suggestions. I think I will start back with the herbs to see if that changes things for the better.

I have read about neurogenic bladder and interstitial cystitis being connected with lyme. I also know that the urinary dribbling for us started with the PANDAS. And what is most important is that he thank goodness has no urgency issues or incontinence at night. So I would believe that means it is not IC.

 

I am beside myself as we are once again going backwards but I keep telling myself it could always be worse.

Please help me figure this out.

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Hi,

I have searched old posts and now I am hoping someone might have something to suggest to me. I am out of ideas.

When the PANDAS started, we had some intermittent urinary dribbling during the day. A panty liner sufficed.

After first HD IVIG, everything remained the same.

We started Chinese herbs in addition to antibiotics/antifungals,antiparasitics.

Everything was really shaping up and then added artemesia and it all fell apart. urinary dribbling increased at this time requiring regular flow women's sanitary napkins. The panty liner no longer was adequate.

I stopped Chinese herbsd thinking they may be high in oxalate causing urinary issues to flare.

We had another HD IVIG and did Ibuprofen for several days with no relief to the urinary incontinence.

And today, the pads are no longer working. This is a child who has been potty trained for forever and also still goes on potty and pees and poops.

 

What is this???? Any suggestions. I think I will start back with the herbs to see if that changes things for the better.

I have read about neurogenic bladder and interstitial cystitis being connected with lyme. I also know that the urinary dribbling for us started with the PANDAS. And what is most important is that he thank goodness has no urgency issues or incontinence at night. So I would believe that means it is not IC.

 

I am beside myself as we are once again going backwards but I keep telling myself it could always be worse.

Please help me figure this out

 

For both my kids The only thing that stopped the urinary leakage, bed wetting, constant peeing etc was antibiotics. It returns when I remove them. Is your child currently on them?

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It's so weird. My 11yo son had this problem for awhile. He had previously had recurrent UTI. The doctor cultured it and it came back morganella. It was resistant to common antibiotics. I think the leakage started after everything was cleared up though. We were thinking it was psychological because it happened during a flare of his OCD.

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Thanks for everyone's thoughts.

 

Well, it is all so puzzling to me. Completely dry at night.

 

It does seem that there is an OCD component to it that comes along with a tic. At other times, it seems that urine just comes out as he will at other times still independently go to the bathroom to do number 1 and 2. Thank goodness for that.

 

I suppose it is flare related. But the issue is we are already on antibiotics and several at that. And getting IVIG.

 

What else is there left to do? PANDAS makes one feel so helpless.

 

I will get him checked for UTI but I don't think this is the case. He has no fever and does not seem in discomfort when voiding.

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PANDAS affects the area of the brain that handles this. Often kids will feel a frequent need to "go" or no need at all. Or they will have bowel incontinence. This is a symptom of PANDAS which can come and go. My daughter is incontinent right now. In fact, that was the first symptom. I thought she had a UTI. She didn't.

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