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I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing.

 

An thoughts?

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I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing.

 

An thoughts?

 

My dd starts to have trouble wetting the bed when she has vag. strep. Has she been swabbed in this area? Other than that I don't have any experience but wanted to say HUGS!

 

Susan

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I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing.

 

An thoughts?

 

My daughter went through a period of time where she would just pull down her pants and pee on the floor, or sometimes in the trash can or on something (yeah, we had to toss out that gameboy). She seemed very deliberate in choosing a "spot" for it. I never figured out what was going on with that, but thinking back, it was about the time she had a vag. yeast infection (or maybe it was strep, didn't swab that area, but was on antibiotics at the time). The problem just resolved over time...maybe as the result of treatment. Its been several years now, and there was so much going on with her healthwise at the time, but i don't recall connecting the return to the toilet with any specific treatment.

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My son (5) starting wetting his bed again . It seems to come in clusters. He'll wet it for a week or two, then he'll stop. I now have a set of sheets on my bedroom floor "just in case". Just so I don't have to go scurrying around the house in the middle of the night. Also, even when he doesn't wet it, he does wake up almost every night to use the bathroom.

 

I've treid cutting down on drinks a few hours before bed and it did not make a difference.

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Shaes mom-

 

Yes! My daughter had several potty issues during her episode.

 

First, she urinated frequently, felt she had to still go after she went, felt a drip would come out after she left the bathroom (panties wouldn't be wet- negative for UTI- actually was first and fairly common pandas symptom).

 

She wet the bed several on several occasions at night (She hadn't done that in several years- she is almost six)

 

All of this seemed to morph quickly into an ocd type behavoir of excessive wiping (LOTS of time in the bathroom) after urinating (along with frustration).

 

Then she started to realize how stressfull using the bathroom was, so she started avoiding it at all costs (including a few accidents at home and school).

 

She is doing much better, but this has taken the longest to resolve (she is about 4.5 from onset of pandas), it has been a process.

 

Hope this helps...

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Guest asaxon
I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing.

 

An thoughts?

Yup, we have something like that. Seven y/o girl won't pee or was hands unless a parent is watching, and has what the researcher below tactfully describes as "ritualistic urinary hygiene". (We just do what she asks while we pray for the Zoloft to kick in.) It turns out it is a classic symptom:

 

From Stephenson, Joan, "Strep A, Neuropsychiatric Disorders Tie Found," JAMA, Vol 287, No. 7., p. 828 (2002) [Report on findings presented at the Interscience Conference on Antimicrobial Agents and Chemotherapy by Michael Pichichero, MD, of the University of Rochester Medical Center in Rochester, NY.]:

 

"During a 3-year period (1998-2001), Pichichero and Marie Lynd Murphy, MD,of the Elmwood Pediatric Group in suburban Rochester, identified 12 children who were experiencing a first episode of neuropsychiatric symptoms that met PANDAS criteria....

 

Parents sought care for their children because they suddenly began to show severe obsessive-compulsive behavior, including a constant urge to urinate, excessive hand washing, and preoccupation with germs. In fact, more than half the children were initially examined for a possible urinary tract infection, which was ruled out in all of them, said Pichichero.

 

'Most obsessive thoughts were in the categories of fears: fear of germs, illness, death, or harm to self or a loved one,' the researchers said. 'Many presented with a compulsive urinary frequency or ritualistic urinary hygiene or a compulsive need to remain with their parent,' they said."

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We have had many issues with urinary frequency over the years during PANDAS exacerbations. Omnicef helped him alot with that urge going away. We were on Augmentin and PEN VK and they did not help with that. We did the UTI tests also and they were always negative.

We have been having daily issues now with the soiling though. I can't figure out what is causing it. There are alot of kids on this board on long term antibiotics. Are they having soiling trouble? He doesn't make it then he gets the mess all over the place. Today it was on the hamper, toilet, carpet, shorts, underpants, carpet, floor,. I get so mad at him for not getting there sooner. What is causing this? Is it the meds he is on Abilify, Omnicef, and Celexa or what? It is not really runny. It is definately in his pants and then he itches back there constantly and digs through his shorts at his back side. I know it is irritated. Is this common with OCD or PANDAS? I just don't know what to do. He is on Kefir, fish oils, probiotics, gummie vitamins. Something has to be done. I wonder if IVIG will help with this?

 

I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing.

 

An thoughts?

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Michele,

 

The soiling in his pants is called encopresis. We have been dealing with it for three years along with the constant constipation. We had a phone consult with Dr K last week and said the poop issues are related to the PANDAS. Prior to knowing she had PANDAS, all the other specialists and doctors we had been to said she needed to be repotty trained. I have always found it hard to believe that a 7 year old would willing run around with stool in their pants. Now I guess we know that it relates to the PANDAS. I'm hoping IVIG does take care of this issue. Personally, I've cleaned enough poopy underwear to last me a lifetime.

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Michelle,

My son had urinary frequency that was very bothersome to him. His teacher reported that he was going an average of 8 times a day during school. He also had OCD issues concerning toileting. When he would go #2 (not sure what is polite here) he would wipe so much that he would often clog the toilet. Then he would feel like he had to change his underwear, eventhough there was nothing in them. This would usually happen before we were leaving to go to school, which was a major anxiety trigger for him. Most of the time I would have to wipe him to make sure there was nothing left (this occured even up through age 9) so that we could leave the house. It did help when I got flushable wipes, but then if he felt wet down there from using the flushable wipe and didn't get to wipe again with dry toilet paper, he had to go change his underwear. Thankfully, this is not an issue anymore since IVIG, so I would say from my experience that IVIG may help in this area. I'm SO sorry you are dealing with this. That must be VERY difficult and I truly sympathize.

Christie

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Michelle,

My son had urinary frequency that was very bothersome to him. His teacher reported that he was going an average of 8 times a day during school. He also had OCD issues concerning toileting. When he would go #2 (not sure what is polite here) he would wipe so much that he would often clog the toilet. Then he would feel like he had to change his underwear, eventhough there was nothing in them. This would usually happen before we were leaving to go to school, which was a major anxiety trigger for him. Most of the time I would have to wipe him to make sure there was nothing left (this occured even up through age 9) so that we could leave the house. It did help when I got flushable wipes, but then if he felt wet down there from using the flushable wipe and didn't get to wipe again with dry toilet paper, he had to go change his underwear. Thankfully, this is not an issue anymore since IVIG, so I would say from my experience that IVIG may help in this area. I'm SO sorry you are dealing with this. That must be VERY difficult and I truly sympathize.

Christie

 

Wow, it never occured to me that this behavior would be OCD! My kids do the same thing. I have to wipe them and they are very concerned about anything being left or feeling wet or having their underwear wet. I've always wondered "what the...???" They also use so much toilet paper!!

 

Susan

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I'm envious to hear that your kids at least use the bathroom! My daughter avoids it all costs.

I'm just trying to think of some solutions for you. Is it the whole room that causes anxiety, or just the commode? Or is it a germ thing? Or possibly your daughter doesn't even know why. So, some ideas, anyway...could you and she go out and shop for a new toilet seat together? Antibacterial wipes? Just thinking if there's some way to make it feel safe for her....Anybody else have some ideas?

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If IVIG helped with the problem, then I would think it is not being caused by meds. But there is a chance meds are making it worse. Did everyone who has that issue listed their meds? Even though you don't want to "give in" and reinforce any fears, you first have to get them to feel safe enough enter the bathroom for those who think it might be a germ/dirt thing. They do also sell disposable seat covers like they have in public bathrooms. Maybe look it up online or in a store, show them and say "What do you think? I thought about getting some of these" Do be careful w/ flushable wipes. They easily clog pipes if you use more than one or two. If this problem happens in public often, it may be a touchy subject to bring up, but stores do sell "underjams"..the older child version of a pull up. But I would only suggest using that if they often soil themsleves in public and only use them when you go out. You don't want them to become reliant on them.

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Shaes mom-

 

The potty issues were helped somewhat by 20 days of full strenght zithromax. Time has seeme to take care of the rest. This was her first symptom, and the one that gripped her the hardest. It has been the last to go away. (It has taken about 4 months).

 

Like another parent said, I began wiping her. This seemed to give her some relief, and help her begin to feel comfortable using the bathroom again. Now, occasionally she forgets and wipes herself. She did wipe herself at school, if she really had to go.

 

We do work with a psychologist, she felt it was important to keep Julia going to the bathroom (medical reasons) and use whatever measures necessary: sticker rewards, candy rewards, me wiping her, etc. We are done with school, but when she was in school, we were using a morning prize (I had a bag of small wrapped toys she could choose from) if she could get dressed, and use the potty. It didn't work every morning, but it helped.

 

It is so difficult, I wish you the strength to handle it, and a quick recovery for your daughter.

 

(We did not do psych meds. 20 days of full strength zithromax made the world of difference, then she went on 2x a week prophylactic dose, and continues to improve)

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The only meds my dd is on are prophylatic Azith (started 30 days ago), Ibuprofen & Benadryl. We have been dealing with the poop issues since 2006. I don't think I've had a break from wiping her since she was born. We have tried every reward known to mankind. They may work for about a week or two and then she is no longer interested in them.

 

The peeing accidents have just started in the last two weeks. She had another one last night when she was with her Dad. They were at a park, she told him she needed to go, they walked about 100 yards to the bathroom but she had already had an accident.

 

I've asked her several times why she goes #2 in her pants and recently she told me that her brain doesn't tell her when she needs to go. When asked about the #1 accidents she has said that she doesn't make it the bathroom in time.

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