potty delay

[smartyjones]

this was brought up in a recent post but i wanted to pull it out to ask for advice.

 

my son delays peeing - if it were up to him, he'd never go. we conquered a fear of the potty with 73 days of desensitization this summer - he used to not use the potty at all. he can now go at home, at relatives or friends and a public potty with his portable potty seat with a parent present. he does not go at school - he's currently only there 1/2 day, has just started staying for lunch and will try to move him into full day. i'm not so concerned he'll have an accident - he can hold in for 8-12 hours. but my concern is he'll become troublesome, more like a 3 year old who's learning and antsy when he has to go. i can't look at it as he does have the option to go, he can just choose it b/c i believe for him, he sees it as not really an option - it's as if any other person were really in a place w/o a bathroom to use.

 

we have times he pees worked into our routine and for the most part, it works well - morning, home from school, before dinner, before bed. if he refuses those times, when/if he becomes troublesome, we focus on the behavior rather than going - such as you're sitting with me for 10 minutes b/c you were throwing books around the playroom. that was a suggestion from psych b/c if i tried to make him go, it would become a battle. we seemed to have it in a good system now. it was the antsy behavior that would drive me crazy and now if that occurs, i focus on the behavior, not the fact that it would be fixed if he would just pee.

 

i think this is an example of something that developed b/c of pandas irrational fear and has morphed into a phobia and a pattern. we never did discover the root of the potty phobia at home, he just got over it by doing the steps.

 

however, we are working on a desensitization program at school. when i pick him up, we go into the potty and work on one step a day. one day, i pick, the next he does. such as counting to 10 while standing in the bathroom, putting the seat on and touching it while counting to 20. he's been very resitant to sitting, even with clothes.

 

i know we conquered this before but it was 73 days! the psych thinks we should be able to do this in 30 days. does anyone have any ideas?

 

i told the psych that i get a bit frustrated b/c i don't know how to draw the connections for him b/c they don't work - if you don't feel good b/c you have to pee, go pee! if you don't want to get in trouble b/c you're acting up b/c you have to pee, go pee! if you don't want to have an accident at school, go pee! she said, no b/c it's illogical - so he can't see those logical connections. he just has to do it enough times that he's comfortable and that becomes his habit.

 

any suggestions b/c i'm feeling like he's never going to use the potty at school. thanks!

[dcmom]

smartyjones- I don't have much advice to offer But just wanted to say- I know how tough it is.

 

I do have to say, then when my dd is really well - it is not an issue, when she is doing ok- it is a minor issue, and when she is having an episode or flare- it is more of a problem. She is VERY resistant to working on stuff (we have seen a psychologist in the past). I have found, that as she improves in general health this issue melts away- so in a way I hate to make a huge deal out of it. Right now, we handle it like: everyone (me and her sister) has to go potty before we leave the house. For the most part she pretty easily makes it through the day without using the bathroom- but she will go if she has to. (I think it is fairly common for kids to not use the bathroom during the day at school)

 

How was he over the summer when you desensitized him? I am just wondering if he improved in 73 days because he was coming out of a pandas flare up- and is he now having issues in general again- or is it just the potty stuff?

 

Frustrating...

[momtotaylor]

smartyjones - I just posted under another thread and then saw your post. I wish I could offer some advice! I feel the same way. My daughter is in school for half a day as well and she would NEVER even think about using the potty at school! We, like you, structure the bathroom or she would not use it. We go once in the morning, before we go anywhere in the car and before bed. She will use the potty (if it is clean enough) at someone else's house, but she would NEVER go in a public bathroom. I too am worried about next year when she is in school the whole day.....

[MomWithOCDSon]

this was brought up in a recent post but i wanted to pull it out to ask for advice.

 

my son delays peeing - if it were up to him, he'd never go. we conquered a fear of the potty with 73 days of desensitization this summer - he used to not use the potty at all. he can now go at home, at relatives or friends and a public potty with his portable potty seat with a parent present. he does not go at school - he's currently only there 1/2 day, has just started staying for lunch and will try to move him into full day. i'm not so concerned he'll have an accident - he can hold in for 8-12 hours. but my concern is he'll become troublesome, more like a 3 year old who's learning and antsy when he has to go. i can't look at it as he does have the option to go, he can just choose it b/c i believe for him, he sees it as not really an option - it's as if any other person were really in a place w/o a bathroom to use.

 

we have times he pees worked into our routine and for the most part, it works well - morning, home from school, before dinner, before bed. if he refuses those times, when/if he becomes troublesome, we focus on the behavior rather than going - such as you're sitting with me for 10 minutes b/c you were throwing books around the playroom. that was a suggestion from psych b/c if i tried to make him go, it would become a battle. we seemed to have it in a good system now. it was the antsy behavior that would drive me crazy and now if that occurs, i focus on the behavior, not the fact that it would be fixed if he would just pee.

 

i think this is an example of something that developed b/c of pandas irrational fear and has morphed into a phobia and a pattern. we never did discover the root of the potty phobia at home, he just got over it by doing the steps.

 

however, we are working on a desensitization program at school. when i pick him up, we go into the potty and work on one step a day. one day, i pick, the next he does. such as counting to 10 while standing in the bathroom, putting the seat on and touching it while counting to 20. he's been very resitant to sitting, even with clothes.

 

i know we conquered this before but it was 73 days! the psych thinks we should be able to do this in 30 days. does anyone have any ideas?

 

i told the psych that i get a bit frustrated b/c i don't know how to draw the connections for him b/c they don't work - if you don't feel good b/c you have to pee, go pee! if you don't want to get in trouble b/c you're acting up b/c you have to pee, go pee! if you don't want to have an accident at school, go pee! she said, no b/c it's illogical - so he can't see those logical connections. he just has to do it enough times that he's comfortable and that becomes his habit.

 

any suggestions b/c i'm feeling like he's never going to use the potty at school. thanks!

 

Well, I think you're on the right track with the exposure response prevention program, just continually exposing him to what makes him anxious and see if he can get the anxiety to back down quicker and quicker upon each exposure, and continually, slowly "turning up the heat" on that exposure.

 

When you say that he won't sit down on the school toilet, even with his clothes on, though, I wonder if maybe you could forego that altogether? I mean, if the goal is to get him to pee in the school bathroom, is sitting on the toilet -- clothed or without his pants -- even part of the picture?

 

I ask this because my son is similar with regard to his particularity regarding bathroom habits. He prefers to go at home only, but he will pee at school or in public washrooms because he can stand, have minimal contact with what he thinks might be dirty or contaminated, and get out of there relatively quickly. He will not, however, sit to poo at school or in public restrooms, and this will be a next step for us. And the thought of sitting down on a public or school toilet, in his clothes, would be totally repulsive to him. Then his clothes would be contaminated and he wouldn't be able to sit anywhere else before changing his pants because he would just spread the contamination.

 

Another suggestion might be to ask if there's an alternative to the regular kid's bathroom at the school for him? Maybe it's not the idea of going pee there, but the environment itself that makes it harder for him. Is it messy? Does it have an odor? Does he maybe (like my son) not trust his peers (at school) or strangers (in public places) to be duly respectful and clean and therefore suspects that these rooms are just way too disgustingly covered in dirt and germs? Then maybe you could arrange for him to use the washroom in the school nurse's office or another more private and "adult" place that, merely by its smaller size, infers that not every Tom, ###### and Harry in the joint has infected the place with some of their own DNA?

[smartyjones]

When you say that he won't sit down on the school toilet, even with his clothes on, though, I wonder if maybe you could forego that altogether? I mean, if the goal is to get him to pee in the school bathroom, is sitting on the toilet -- clothed or without his pants -- even part of the picture?

 

infers that not every Tom, ###### and Harry in the joint has infected the place with some of their own DNA?

 

oh mom - hilarious! i guess i didn't make it clear - he prefers to sit. a year or so ago, my sister tried to get her son to interest him in peeing on trees, rocks, etc - most boys dream - no go.

 

thanks for the ideas - i don't actually think he has contamination issues with it, though. that's part of what's so frustrating is that there's no logical flow, even in an OCD illogical sense. i really don't think he has any reasons - it's just a block. of course, i realize there's got to be something, somewhere, somehow but i don't think it's even close to a conscious issue for him. it's just not what he does - he doesn't use the potty at school. it was how it was at home too before - it just wasn't what he did. once we did the small steps, it somehow morphed into what he did and then it was okay. he doesn't really seem to have this intense block with other issues, the potty is the one. (of course, during pandas episode that wasn't so) i question if he actually has OCD or specific phobia.

 

i see that it could be a form of OCD and if it is specific phobia, the treatment is still basically the same, but how do you work with it when the person doesn't really have the flow of thoughts and the goals are not his own?

[Kayanne]

I don't really have a lot of advice for you because our Daughter's potty issues decreased as she recoved from her PANDAS episode. We took her to a CBT weekly at her worst, but she really was not even capable of using any skills that she learned. Now she is learning some skills, but I think her OCD is so very minimal...that if there is any leftover...even we her parents don't see much.

 

My PANDAS daughter never wanted to go to the bathroom. At her worst, I was wrestling her clothes off and making her go--all the while she was screaming, "Nooo, Mommy!"

 

As she was improving, it was a lot of crying and, "Do I have to go now? No, I don't want to! Please, mommy, no" but I would be able to coax her to use the bathroom a few times a day....she had excellent control and never had an accident--I've often wondered if her control was somehow related to the OCD.

 

She also would have specific behaviors when she was withholding her urine and stool. She would lie down...in the middle of meals, at the playground at school, for hours on the sofa...I think somehow this position made it easier to handle...However, it wasn't disruptive like you are dealing with your son (except at meals). It did get to a point, however, I would find her laying down, and would tell her she couldn't because I knew she was holding it in....so I guess in a way I was focusing on the behavior.

 

Her reluctance to go the to bathroom was probably the very last PANDAS symptom to go. It got to a point, where we had to just tell her that she was not to have an accident, and she could go when she wanted to. But it was still a conversation that went something like this:

 

“I think maybe I have to go poo, but I don’t want to.”

 

“It’s okay if you don’t want to go right now, just don’t have an accident.”

 

Usually she would start to cry if we tell her she has to try to go, but she would be happy when we tell her she can wait.

 

Eventually, she would go. At the very end, My Husband and I felt that part of this behavior was a need to "relearn" some of the sensations, (I think the Basal Ganglia is implicated in bathroom sensations) and/or it was a little bit of her needing to decide for herself...she needed to regain her confidence--which took a bit of a hit from her PANDAS.

 

While she was at her worst, honestly, we just wanted to see her happy, and believing that a PANDAS episode means swelling of the Basal Ganglia--we didn't push her too hard to do things that she was just not capable of. We basically were gently forcing her to do the basic functions....eating, letting us bath her, sitting her on the toilet.

 

Sadly, I know that many of you are dealing with a chronic case, and have to do all that is possible to help your children cope in the outside world. Please, Please don't take this the wrong way because it is not intended to be critical at all (just trying to interject a different line of thinking)...it is just that if you are confident that your son won't have an accident at school, then right now, is this a battle you have to fight..or can it be put off a little while to maybe a point where your son is a little more healed? Also, you know your son best, and what is best for him...if your gut is telling you that 30 days is too short, you may need to discuss a more realistic goal with his psych. I know that these types of therapies don't work, if you don't continually challenge the child to face their fears. However, I think that stress can add to an increase in PANDAS behaviors...It is a difficult balance that as his parent you know best how to strike it.

 

We now try to gently ask her why (or what was she thinking about) as it pertains to her PANDAS behaviors, and when asked about not wanting to go to the potty, she said she doesn't even know why she didn't want to go--I wasn't about to ask if it was because of germs. When we discuss it we try our best to get her interpretation, and not plant ideas into her head.

 

~Karen

[smartyjones]

thanks so much for replies. . . this is something so strange that you can't have an appreciation for unless you live it so i'm so happy to hear of other's living it - although, sorry that you are!

 

for 2 years, well-meaning people and even professionals just wanted to discuss power struggle with me and could not comprehend that it was not a power struggle!

 

so happy for the comraderie - albeit strange comraderie, but i'm still happy for it!

[LNN]

i see that it could be a form of OCD and if it is specific phobia, the treatment is still basically the same, but how do you work with it when the person doesn't really have the flow of thoughts and the goals are not his own?

 

My non-Pandas (but potentially classic OCD) 5 yo daughter has bathroom issues that she cannot see as OCD. Her battle is with public bathrooms, especially automatic flush toilets. The noise terrifies her and she is small, so if the sensor goes off before she's ready, the spray gets her bottom wet and she is terrified she will get sucked in. Since both my parents and and Dr Latimer are all-day drives down I-95, this is a big deal (anyone try to take 2 kids and an adult into a public stall at the Maryland House rest area with 500 people in line for the bathroom while your child screams in your ear and people peak under the stall to make sure there's no blood?)

 

The school also has automatic flushers, so next year when she starts school, we have some homework ahead of us. The kids at school taught my son by example that the automatic flusher can be "turned off" by draping toilet paper over the sensor until you're done. Our other trick is to tell my daughter that "the wet fairy" is trying to trick her into not using the potty. When she is focused on the urge to go, she is giving the wet fairy her attention instead of playing and enjoying herself - that's what the mean wet fairy wants. So we focus on how my daughter (who likes to envision herself as a super hero/strong woman) needs to do battle against evil and conquer/stomp on the wet fairy. Even my Pandas son gets into it and cheers her on. So she usually buys into it and given enough of a pep talk and time to mentally prepare, she'll rise to the occasion. It's ERP for pre-schoolers.

 

Somehow, in terms your son enjoys, paint him as the hero and the OCD issue as a personified villain. Then weave a story where he conquers the enemy and saves (his) world. Hope it helps...

[smartyjones]

thanks Karen. i appreciate your long post but still had a couple questions.

 

she had excellent control and never had an accident--I've often wondered if her control was somehow related to the OCD.

--yes - bladder of steel -- most people don't believe me that he can go 12 hours. today, it was 11 hours when he started becoming troublesome.

Her reluctance to go the to bathroom was probably the very last PANDAS symptom to go. It got to a point, where we had to just tell her that she was not to have an accident, and she could go when she wanted to. But it was still a conversation that went something like this:

 

"I think maybe I have to go poo, but I don't want to."

 

"It's okay if you don't want to go right now, just don't have an accident."

 

Usually she would start to cry if we tell her she has to try to go, but she would be happy when we tell her she can wait.

 

-- how old was she at this time? did you just let her go on no matter how long it had been?

Sadly, I know that many of you are dealing with a chronic case, and have to do all that is possible to help your children cope in the outside world. Please, Please don't take this the wrong way because it is not intended to be critical at all (just trying to interject a different line of thinking)...it is just that if you are confident that your son won't have an accident at school, then right now, is this a battle you have to fight..or can it be put off a little while to maybe a point where your son is a little more healed?

 

-- i do feel we are at a bit of a cross-roads b/c he is doing well in school and he should have been full-day a year ago. he is doing really well in school and they'd like to see him with his peers. the psych does feel that since he's doing well now, we should push b/c she doesn't want the gap between him and his peers to increase. she's looking at that we could get him into this now and have him with his peers vs. not pushing and having him lag behind which with his phobic-tendencies could create more troubles and things to fear as that gap grows (or has the potential to grow over the next year). i do agree and i think he's never going to decide he wants to use that potty at school on his own. so i do think there are elements of helping him to cope in the world involved. the plan is to try to get him to use the potty but to move ahead with him transitioning to full-day. i just feel bad b/c i know if he does feel like he has to go, he won't have an option there. my 8 year old doesn't use the potty at school often but i know that if he has to, he will. pandas son will be like if i was in an office bldg all day that didn't have a bathroom and i know how unhappy i'd be.

We now try to gently ask her why (or what was she thinking about) as it pertains to her PANDAS behaviors, and when asked about not wanting to go to the potty, she said she doesn't even know why she didn't want to go--I wasn't about to ask if it was because of germs. When we discuss it we try our best to get her interpretation, and not plant ideas into her head.

 

--we just had a cognitive inflexibility issue today that is more of a random nature. the potty is lower level but more constant. i posted about that asking if people thought it was something to work on with other means - CBT, ERP - and the consensus seems to be that those are not really so helpful and it's part of the medical issue. do you believe from your experience, that these potty issues are the same - mostly treated with the medical treatment?

 

can you just quickly remind me of what your daughter's treatment was and what you're doing currently?

thanks!

[Kayanne]

smartyjones,

 

Sorry it has taken me a while to reply....we had a busy weekend (good type of busy )

 

-- how old was she at this time? did you just let her go on no matter how long it had been?

When all of this started happening, our daughter had just turned six about two months prior. End of March/Beginning of April is when we started to notice her behavior to change. At home, we noticed it was over a few weeks that she got "difficult". At school, her kindergarten teacher felt that it was more of an abrupt change.

 

Her screaming about going to the bathroom, and my having to gently force her to go happened up until the steroids kicked in very suddenly on July 3rd. After that, it was some crying about going, and a lot of coaxing from us, and then by September, we just "lightened up" about it, and told her to go when she wanted...no matter how long she waited...by mid-September she was going to the bathroom regularly without asking us first, or needing any prompting. So all of this has happened while she is six years old...prior to PANDAS, she was a completely independant as far as her personal care (except for a little help rinsing the shampoo out of her hair sometimes).

 

She will be 7 in February.

 

 

-- i do feel we are at a bit of a cross-roads b/c he is doing well in school and he should have been full-day a year ago. he is doing really well in school and they'd like to see him with his peers. the psych does feel that since he's doing well now, we should push b/c she doesn't want the gap between him and his peers to increase...

 

I think I should point out that for the most part, Becca's PANDAS occured during the last quarter of a very successful kindergarten year, and during the summer. As far as school was concerned, they knew she had a really good grasp of the material, and felt comfortable moving her along to first grade even though she was barely responsive, and her social skills just dropped off...she looked autistic.

 

During the summer, we felt we had the luxury to just "let her be". We took her to weekly CBT, but kind of agreed wth the therapist that those appointments were really so that a "professional" could see her progress. We didn't want her to get frustrated because we felt really that she wasn't capable of trying the skills anyway.

 

We were going by her behavior. After about a month, of getting angry, telling her she couldn't say "maybe yes or maybe no" when we asked her a question, her crying fits were very frequent, and we couldn't comfort her at all. We basically dropped all expectations on her, and she did become happier. We saw giggles (actually made it a point to make her laugh once a day), and she would run around the house with her little brothers, but mostly she sat in front of the tv. We performed all of the basic functions for her. I should add, that she didn't play with her older sister or some friends when they came over...I just think it was too complicated for her.

 

I knew, though, that come September, it was going to have to change if she didn't improve. In a lot of ways, PANDAS happened to my daughter at a good time of the year, and for that I am grateful.

 

--we just had a cognitive inflexibility issue today that is more of a random nature...do you believe from your experience, that these potty issues are the same - mostly treated with the medical treatment?

I think cognitive inflexibility is an excellent term. Definetly, 99.99% of her issues dropped off when she came out of her exercerbation. Yes, my husband and I didn't push her because, as we understood it at the time, we thought she had actual swelling in the Basal Ganglia.

 

Now we are left with (prior to PANDAS I would have called her stubborness) some minor things. Like crying if I put a barette in her hair instead of a ponytail--or it is not quite on the top of her head, crying if she cannot wear what she wants...

 

But this was normal before we heard of PANDAS. I just considered her more "fussy". Really right now, we see bits of behavior that break through, that most people would consider completely normal...but having gone through a PANDAS episode, and the information sharing on this forum, it is hard not to take a second look.

 

Hindsight being 20/20, we do think she had a milder PANDAS episode around 3 yrs old, and I have wondered if her baseline was set there because of it...but knowing what I now know about OCD...this could just be a natural genetic disposition toward it...my husband and many of his family have minor OCD tendancies...

 

So I often wonder, and don't think I will ever know how much is geneticlly classic OCD, and how much is PANDAS, and how much is normal six yr. old stuff?

 

can you just quickly remind me of what your daughter's treatment was and what you're doing currently?

thanks!

 

The ped practice treated her strep. She kept testing positve on rapid strep tests from March - May. She was on 5 days of Omnicef, 10 days of amoxicillin (once a day!), 10 days of augmentin with rifampin added on days 7-10, and finally on 10 days of clindamycin 300mg 3/times a day. She has not tested positive again....rapids and cultures --negative.

 

We saw Dr. L on June 5th, and she prescribed a month of prednisone....two weeks treatment, two weeks taper....we did an additional two weeks of taper (5mg once a day). She also prescribed 100mg of azith daily as a prophylaxis.

 

We saw babysteps of improvement for most of the month...with three days left...we saw dramatic overnight results...that's why we requested to continue the 5mg because she was sooo close to being back.

 

By August, she started writing and drawing again, and in Sept we changed her prophylaxis to 200 mg of pen vk twice a day.

 

The week after that, her potty issues went away.

 

I hope this info helps...I'm so sorry about the long post...I have a difficult time keeping things short.

 

~Karen

[momto2pandas]

The "mind over matter" phenomenon with these kids is remarkable. My ds6 can also hold it forever if he doesn't want to go. I think I mentioned in another thread that when he was little, his "poop retention," as the pediatrician called it, got so bad that he had to be hospitalized twice with toxic reactions. He was nearly 3 at the time, and he didn't want to use a diaper (his choice, not ours) but didn't want to use the potty either, so his solution was just not to go at all. We had to use HEAVY bribery to solve the problem.

 

I have wondered if this ability to override organic impulses is related somehow to anorexia nervosa (or vice versa, I guess).

 

 

this was brought up in a recent post but i wanted to pull it out to ask for advice.

 

my son delays peeing - if it were up to him, he'd never go. we conquered a fear of the potty with 73 days of desensitization this summer - he used to not use the potty at all. he can now go at home, at relatives or friends and a public potty with his portable potty seat with a parent present. he does not go at school - he's currently only there 1/2 day, has just started staying for lunch and will try to move him into full day. i'm not so concerned he'll have an accident - he can hold in for 8-12 hours. but my concern is he'll become troublesome, more like a 3 year old who's learning and antsy when he has to go. i can't look at it as he does have the option to go, he can just choose it b/c i believe for him, he sees it as not really an option - it's as if any other person were really in a place w/o a bathroom to use.

 

we have times he pees worked into our routine and for the most part, it works well - morning, home from school, before dinner, before bed. if he refuses those times, when/if he becomes troublesome, we focus on the behavior rather than going - such as you're sitting with me for 10 minutes b/c you were throwing books around the playroom. that was a suggestion from psych b/c if i tried to make him go, it would become a battle. we seemed to have it in a good system now. it was the antsy behavior that would drive me crazy and now if that occurs, i focus on the behavior, not the fact that it would be fixed if he would just pee.

 

i think this is an example of something that developed b/c of pandas irrational fear and has morphed into a phobia and a pattern. we never did discover the root of the potty phobia at home, he just got over it by doing the steps.

 

however, we are working on a desensitization program at school. when i pick him up, we go into the potty and work on one step a day. one day, i pick, the next he does. such as counting to 10 while standing in the bathroom, putting the seat on and touching it while counting to 20. he's been very resitant to sitting, even with clothes.

 

i know we conquered this before but it was 73 days! the psych thinks we should be able to do this in 30 days. does anyone have any ideas?

 

i told the psych that i get a bit frustrated b/c i don't know how to draw the connections for him b/c they don't work - if you don't feel good b/c you have to pee, go pee! if you don't want to get in trouble b/c you're acting up b/c you have to pee, go pee! if you don't want to have an accident at school, go pee! she said, no b/c it's illogical - so he can't see those logical connections. he just has to do it enough times that he's comfortable and that becomes his habit.

 

any suggestions b/c i'm feeling like he's never going to use the potty at school. thanks!