Frequent Urination

[KeithandElizabeth]

Hello:

 

So we are almost 6 1/2 weeks past our first IVIG and my son Quinn is doing great! I would say he is about 75% improved, which is huge for us because we were pretty much stuck in our house because of the severe OCD, etc.... So, OCD was our primary and tics were our secondary. I would say that his OCD and anxiety have improved almost 70 percent and the tics, which were mild, are gone. I have a few questions about the issues we are still having...

 

He still needs to urinate every 4 minutes. I have been timing it! Although yesterday it felt like every minute. Is this OCD? Or can this be an infection? I had him tested for an infection 3 months ago for frequent urination, but it was negative. When he goes to sleep at night, he never gets up to go to the bathroom. So, I am just not sure what to make of this?

 

He is taking Zertec and Sinclaire for allergies. I stopped them 4 days ago when I read some negative information on this web site about these allergy pills. However, when I stopped them, he started waking up scared again in the middle of the night. So I restarted them again and he is sleeping again without waking up. This is our first time using allergy pills. Is there a correlation between allergy pills and sleep? I would prefer not having them on this pills, but the sleep sure is nice.

 

Thanks in advance for any advice!!!

 

Elizabeth

[memom]

Is there a correlation between allergy pills and sleep? I would prefer not having them on this pills, but the sleep sure is nice.

 

Thanks in advance for any advice!!!

 

Elizabeth

 

Elizabeth,

 

Zyrtec makes me sleepy like benedryl and my husband and daughter. I have to say that it may not be a bad thing if taken before bedtime. My daughter's Pandas symptoms are much worse if she is over tired by not enough sleep.

 

Because we haven't had the frequent urination issue I am no expert, but I have heard of other kids on this forum have this as one of their symptoms. Alex's son especially had it as on of the first symptom they noticed. Boy's in particular don't often get UTI's (great anatomy as compared to girls), and if you have had him checked during a previous episode and was negative, I would blame it on Pandas. If you have a nagging worry, get him tested, easy to do.

 

Ellie

[ShannonOtown]

My son has frequent urination at bed time. It get very severe where he gets up every 5 minutes till he falls asleep. The doctor is not sure if this is a tic or ocd, but she guesses its an ocd issue 'checking' symptom. We have been to 2 uroloigist and current going to a nephologist (kidneys) just to double-check it's not a medical condition. I'll let you know what happens (current testing/lab work).

 

He has good and bad nights and he gets extremely frustrated (he's 11). He can't stop, although he tries to stay in bed. I can tell when he has stressful high anxiety days, he has bad urination issues at night.

 

Shannon

[Megs_Mom]

Hi Elizabeth –

 

My daughter found that symptom (the frequent urge to pee) one of the most frustrating - it made her mad that she had to keep going & nothing came out. It is OCD (so long as you have already checked for infection), and can be treated by ERP (Exposure & Ritual Prevention) therapy (I am always, for a PANDAS child, suggesting ERP for 2 reasons - 1. to help with the final 10-20% of OCD remaining after medical intervention and 2. to help keep the child more in control during a sudden onset, so that they have some practice and a little bit of control over their own brains - to make that onset a little bit less terrifing and more understandable). ERP therapy is a form of CBT therapy. Everyone that does CBT however, is not trained in ERP. It is a kind of Behavior therapy. I like to think of it as retraining the brain to take over for the renegade OCD part.

 

The clue to OCD is a “repetitive behavior that usually causes anxiety if you can not do it”. So if you try not to pee, and that makes you anxious, then it is OCD. If you pee once, and very little comes out – then the next time, try delaying. If that causes anxiety, even though you both know that he does not need to pee, then that is OCD. It’s a compulsion – which is, by its nature, difficult to give up because it stops the anxiety. Two things will stop anxiety for a child with OCD – time spent NOT doing the compulsion – or doing the compulsion. Doing the compulsion is much easier, but unfortunately, it trains your brain to want more, usually in a shorter time. Not doing the compulsion will slowly stop the urge to do it – but they have to be able to take the anxiety that it causes. So there are tools to help this, and you need to have very good rewards to motivate them to take the anxiety. Rewards can be very varied – if you need ideas for this, let me know.

 

We actually found this one of the easiest symptoms to treat, as Meg was very frustrated by this feeling, and it was interrupting her life pretty extensively – and was therefore very motivated, even early on (she could work on this one even before we found PANDAS and gave her anti-biotics. However, it would come back the next time & we'd have to start again). I can email you my file for this if you’d like. Basically, it was a matter of agreeing with Meg on a plan that she was comfortable with, and taking baby steps. The trick is to deal with the anxiety that “not peeing” creates, for longer & longer times, until the urge goes away. So the ERP tool that we used was “delay” and the techniques were “time” and “coupons”. The first thing we did was to track the number of times she peed and when, for 2 days. Once we had this baseline, then our goal was simply to reduce this by 1. We agreed on the number, and then agreed on a reward. I gave her coupons for “peeing” that she needed to turn in before going to the bathroom. Having her turn in the coupon into a box was a delaying tactic, because usually she would just bolt to the bathroom. I praised her each time she used the coupon box. It also allowed her brain to think about how many times she had peed.

 

At the end of the first day she had beaten her goal by a lot (from 50 down to 45 – the goal was only 49). So then we set a goal for the next day of 44. We always tried to go for an improvement, but in very slow steps. We made a big deal out of the success at the end of the day, by telling dad & by picking a prize from the prize box. Once we got down to around 10, we agreed that a reasonable number of times to pee a day, that would not be OCD, was 5. So that was the ultimate goal. At that point, we saw much slower progress, but still steady – and then added new delaying tactics. So before peeing, she might be asked to set a timer for X (1-20 max) minutes, and then go. That way, she was pushing the anxiety further out. During this wait time, we would agree on something fun that we might do such as a short game that we only play during “bravery work” or reading or take a short walk outside – whatever that will help pass the time. But we don’t do this as a distraction, we acknowledge the anxiety/need, but then “do what we want to do anyway”.

 

Towards the end, we had a couple times at bedtime that were hard. She was afraid that she would pee in the bed. So we did a few nights where we put down a towel and wore old jammies, and agreed that we would just fix the bed if it happened and never tell anyone. This took her a few nights to build up her courage about. We would pee on purpose at 8:15, and then go to bed without peeing again. We had to slowly work this down from about 3-4 times towards the end of the program. In teaching this program, it was important to first “externalize” the OCD – make it something acting upon Meg, instead of something that she really wanted. This was tough for a 3 and 6 year old to get, but usually just tool 4-5 days of practice, and she would start to get it. We would ask all the time “is this something Meggie wants to do, or something the worryman (her name for OCD) wants you to do”. I would also say things like “it looks like OCD is really being mean to you right now, and I am very sorry about that. We can learn together to beat him up, when you are ready to try”. Sometimes, it can still take her a little time to know which is which, but in general, she is extremely good at knowing if she is giving in to a compulsion, or if she wanted to do something. She is very clear at age 8 now, about what a compulsion is, and why giving in to it will just cause the anxiety to come back the next time. She still has about 4-5 compulsions a day in total, but we are still determined to work on this. The ones that are left are not consistent, which is good.

[familyof4]

We have had the whole range of frequent urination issues. With some of his PANDAS flares it was a nighttime thing from the time we put him to bed until he finally fell asleep. At it's worst it was every 3-4 minutes throughout the day and kept us totally housebound. I am leaning toward it being OCD and not a tic but I can't say for sure. We did have him checked out and it is not an infection or medical issue.

 

As an aside, my mom complains that she can't take zyrtec as it makes her have to go pee every 30 minutes. If you could try benadryl or something besides zyrtec to see if it helps relieve the urination issue I would.

 

Heather

[sf_mom]

Elizabeth,

 

I'm going to guess that it is just 'PANDAS' and once your child is fully recovered those symptoms will go away. His current need to pee is probably part of the saw tooth recovery and as he gets better so will the peeing. I think it was last night I was talking with my son and he mentioned to me 'how much he used to need to pee'. He had never mentioned this to me before and knowing this is typical of PANDAS, I inquired further. Apparently, he was getting up all the time in the middle of the night to pee. We also had one bed wetting experience back in Sept right before IVIG when he had been on antibiotics for a month. Its strange how he can talk about some of his behavior objectively now.

 

I think you'll see continued improvement. What is his current antibiotic dose... perhaps trying upping it for 14 days to see if it helps.

[KeithandElizabeth]

Thank you so much for all of your reply's.

 

Susan (Meg's mom) thank you for the OCD ERP therapy tips. I plan to use them!!

 

I feel so much better thinking this is OCD because I had this fear that he was having some sore of major kidney issue from the IVIG. I know this is so rare, but I am definitely having post traumatic stress syndrome. And we are not really "post" yet. I guess that I feel so vulnerable after this intense PANDAS journey and I feel that bad things can and really do happen to these innocent little children. I am just needing to vent. And then with every step back with the healing process, you wonder is the a total relapse and are we starting all over again. So, here we are doing so much better and functioning so well and yet I still feel so scared. I need to work on myself now so that I can be more fully present and begin to really enjoy my family.

 

Elizabeth

[sf_mom]

Me TOO!! I know exactly how you are feeling and our son is doing really well 4 weeks 2 days post IVIG!!

 

-Wendy

 

Thank you so much for all of your reply's.

 

Susan (Meg's mom) thank you for the OCD ERP therapy tips. I plan to use them!!

 

I feel so much better thinking this is OCD because I had this fear that he was having some sore of major kidney issue from the IVIG. I know this is so rare, but I am definitely having post traumatic stress syndrome. And we are not really "post" yet. I guess that I feel so vulnerable after this intense PANDAS journey and I feel that bad things can and really do happen to these innocent little children. I am just needing to vent. And then with every step back with the healing process, you wonder is the a total relapse and are we starting all over again. So, here we are doing so much better and functioning so well and yet I still feel so scared. I need to work on myself now so that I can be more fully present and begin to really enjoy my family.

 

Elizabeth

[EAMom]

Hi everyone...I never thought of urinary frequency (with PANDAS) as being OCD or tics...but rather a separate entity altogether. I suspect (at least most of) these kids do really feel like they need to go (urge incontinence) similar to the way we feel when we have a bladder infection. There is something similar to this that can go on in Parkinson's dz. http://pdring.com/urinary-disturbance-in-p...ve-bladder.htm#

 

Urinary disturbance or problems with urination is a common, though late, feature of Parkinson’s disease and may be the cause of much embarrassment to the patient. The main function of the bladder is to store urine and then empty it at a suitable time and place but due to degenerative changes in the basal ganglia in Parkinson’s disease, there is interference with the nerve signals responsible for bladder control, resulting in an overactive or irritable bladder. This causes symptoms of urinary dysfunction such as frequency of micturition, urgency, urinary incontinence, and incomplete emptying of the bladder.

 

In PANDAS kids I suspect bladder control nerve signals are messed up due to basal ganglia inflammation....fortunately, with pandas kids, the problem is just inflammation, not irreversible degeneration (like in parkinsons), so the problem isn't permanent.

 

Here's more: http://www.sciencedirect.com/science?_ob=A...6308eaba4f33f6a

 

Parkinson’s disease is a common neurodegenerative disease that shows not only movement disorder, but also profound urinary dysfunction. Bladder hyperactivity is the major urodynamic abnormality. Therefore, the basal ganglia have been thought to modulate the micturition reflex.

 

Of course...it is possible that the child also develops some OCD behaviors secondary to this urge incontinence...so ERP might help that.

[sf_mom]

WOW, EAMom once again fantastic information. I think you are right. Again, my son can talk to me objectively about his need to go now that he is feeling better. He seems relieved that its not a problem.

 

-Wendy

 

Hi everyone...I never thought of urinary frequency (with PANDAS) as being OCD or tics...but rather a separate entity altogether. I suspect (at least most of) these kids do really feel like they need to go (urge incontinence) similar to the way we feel when we have a bladder infection. There is something similar to this that can go on in Parkinson's dz. http://pdring.com/urinary-disturbance-in-p...ve-bladder.htm#

 

Urinary disturbance or problems with urination is a common, though late, feature of Parkinson’s disease and may be the cause of much embarrassment to the patient. The main function of the bladder is to store urine and then empty it at a suitable time and place but due to degenerative changes in the basal ganglia in Parkinson’s disease, there is interference with the nerve signals responsible for bladder control, resulting in an overactive or irritable bladder. This causes symptoms of urinary dysfunction such as frequency of micturition, urgency, urinary incontinence, and incomplete emptying of the bladder.

 

In PANDAS kids I suspect bladder control nerve signals are messed up due to basal ganglia inflammation....fortunately, with pandas kids, the problem is just inflammation, not irreversible degeneration (like in parkinsons), so the problem isn't permanent.

 

Here's more: http://www.sciencedirect.com/science?_ob=A...6308eaba4f33f6a

 

Parkinson’s disease is a common neurodegenerative disease that shows not only movement disorder, but also profound urinary dysfunction. Bladder hyperactivity is the major urodynamic abnormality. Therefore, the basal ganglia have been thought to modulate the micturition reflex.

 

Of course...it is possible that the child also develops some OCD behaviors secondary to this urge incontinence...so ERP might help that.

[smartyjones]

wow EAmom - really interesting.

 

i just wonder - btwn you and Buster - what are your dinner table conversations like??!!

[thereishope]

As for the frequent urination, when my son was going every 5 minutes, I learned it was an excuse for washing his hands again. He knew I was monitoring hand washing and thought he could get around it by saying he needed to pee. Even at 5 yrs old, they learn to hide OCD very quickly.

 

Then he went through a phase of needing to use the bathroom right before dinner. No matter how much warning I'd give, the second everyone went ot the table, he needed to go.

 

Then he had a time when he'd go to the bathroom right before bed, go to bed, and 5 minutes later needed to go again. His mind just got the better of him.

 

In my son's stuation, it was definitely OCD.

 

He did have a few months when he got up in the middle of the night to go to the bathroom or he'd wet his bed, that wasn't OCD.

[Megs_Mom]

I just want to suggest an intersection of EAMom's answer and mine, based on my observations. Personally, I think they are both relevant interpretations with a lot in common.

 

* I believe there IS a medical reason for urinary frequency in many of our kids, as there is for every other symptom. They very likely are having trouble emptying their bladders. And some kids are incontinent (bed-wetting is frequent). So this needs to be considered. The first line of treatment should be medical. I appreciate the article above. For some kids this may be 100% of the answer, and ERP would be unnecessary.

 

* Many of our kids have OCD caused by PANDAS.

 

* OCD often latches onto an actual illness, and then causes an irrational fight or flight response to that stimulus. As another example, my daughter's ulcers do cause her to "taste throw-up and have a tummy ache". However, through ERP, she has been able to learn not to panic. Prevacid helped her stomach & Anti-biotics helped her brain. Even with a 95 -98% remission, she still feels the remnent of OCD when her stomach acts up. This is a learned response taken to an irrational level, and can be very scary to her without tools to help.

 

* In Swedo's studies, I believe that she shows an average of about 70% remission for OCD with both IVIG and PEX. This means that "some OCD" remains as measured on a Y-BOC scale for many kids. This seems to reflect the experiences on this board, although a few of you have been able to get back to 100% of baseline. We have not been that fortunate. The remaining OCD would frankly barely be noticed by a "normal" parent, and is subclinical as measured by Y-BOC. It does not interfere with normal life. But that is just not good enough for us!

 

* In our case, despite what I believe was a "real feeling or need" to pee all the time, she was able to learn to control this, so that it did not dominate her days. So her bladder could be controlled, she just had to learn how to ignore the frequent brain signal and not give into the "fight of flight" urge. I liken this to when I have a bladder infection. I could spend all day in the restroom, but generally, my bladder is strong enough, and I can keep having a normal life despite the medical treatment that is needed. A child with OCD - their life gets out of control.

 

* I fully realize that in the middle of a peak PANDAS episode, starting ERP work may not be possible. However, for at least 70% of our kids, I think that if they learn the tools, it will help in future episodes. Since we had an untreated kid for 3 episodes, we were able to see the results of that practice in terms of less panic, more confidence in herself, and a much higher ability to leave the house (although it was still not easy by any scale).

 

* I fully support a strong medical intervention to get back to 100% baseline. We are trying to do this ourselves. In our house, as in many of yours, OCD has been a very frightening experience, one that causes Agoraphobia, Depression, loss of self-esteem and a near Anorexic behavior that is most concerning. In future episodes, we will treat aggressively medically, and are hopeful to have a medical team to support whatever that may mean. For this current episode, we are trying a new regimen of stronger dosing to see if that will help. But in the meantime, having tools to get through each day have been critical.

 

I always hope that my suggestions about ERP are taken in the spirit that they are intended. For regular OCD, this can be a cure. For PANDAS OCD, it can be a wonderful coping tool in the midst of darkness. I do not present this to minimize the medical symptoms or medical treatment needs. I realize that ERP is time consuming and difficult. But our entire lives stop when we have an episode, so we have lot of opportunity to practice . Because we were misdiagnosed for a while, we were "lucky" enough to have a lot of experience with ERP. We read tons of books, hired a top therapist, went to conferences and seminars. We could not understand why she would lose all her gains so quickly when a new episode came along. I would never suggest that ERP is a cure for PANDAS. But it is a great coping tool along the way. And my intent is only to share those learnings with those parents so that kids can feel a little empowered, and along the way "beat up a little OCD", since we were forced to learn so much about this therapy.

 

I learn a lot here, and print out nearly all of Buster & EAMom's studies. I am very glad to have these with doubting doctors, and feel that I am able to educate the receptive ones in some pretty major ways! Thanks again.

[thereishope]

With my son, he had residual OCD. His PANDAS episode was over. I could tell. But OCD stayed the last time.It didn't eventually disappear on its own like the first 2 episodes. It wasn't until we took the residual OCD as OCD did we overcome it. Once I educated myself on OCD and tackled it head on,he actually got better rather fast and the residual OCD disappeared. CBT would not have worked for us. I think what we did was like ERP. Not sure if it's exactly that since I pretty much formulated it on my own. Also, learning more about OCD and all it may encompass, helps all of us recognize early signs that a PANDAS episode might be starting.

 

 

I just want to suggest an intersection of EAMom's answer and mine, based on my observations. Personally, I think they are both relevant interpretations with a lot in common.

 

* I believe there IS a medical reason for urinary frequency in many of our kids, as there is for every other symptom. They very likely are having trouble emptying their bladders. And some kids are incontinent (bed-wetting is frequent). So this needs to be considered. The first line of treatment should be medical. I appreciate the article above. For some kids this may be 100% of the answer, and ERP would be unnecessary.

 

* Many of our kids have OCD caused by PANDAS.

 

* OCD often latches onto an actual illness, and then causes an irrational fight or flight response to that stimulus. As another example, my daughter's ulcers do cause her to "taste throw-up and have a tummy ache". However, through ERP, she has been able to learn not to panic. Prevacid helped her stomach & Anti-biotics helped her brain. Even with a 95 -98% remission, she still feels the remnent of OCD when her stomach acts up. This is a learned response taken to an irrational level, and can be very scary to her without tools to help.

 

* In Swedo's studies, I believe that she shows an average of about 70% remission for OCD with both IVIG and PEX. This means that "some OCD" remains as measured on a Y-BOC scale for many kids. This seems to reflect the experiences on this board, although a few of you have been able to get back to 100% of baseline. We have not been that fortunate. The remaining OCD would frankly barely be noticed by a "normal" parent, and is subclinical as measured by Y-BOC. It does not interfere with normal life. But that is just not good enough for us!

 

* In our case, despite what I believe was a "real feeling or need" to pee all the time, she was able to learn to control this, so that it did not dominate her days. So her bladder could be controlled, she just had to learn how to ignore the frequent brain signal and not give into the "fight of flight" urge. I liken this to when I have a bladder infection. I could spend all day in the restroom, but generally, my bladder is strong enough, and I can keep having a normal life despite the medical treatment that is needed. A child with OCD - their life gets out of control.

 

* I fully realize that in the middle of a peak PANDAS episode, starting ERP work may not be possible. However, for at least 70% of our kids, I think that if they learn the tools, it will help in future episodes. Since we had an untreated kid for 3 episodes, we were able to see the results of that practice in terms of less panic, more confidence in herself, and a much higher ability to leave the house (although it was still not easy by any scale).

 

* I fully support a strong medical intervention to get back to 100% baseline. We are trying to do this ourselves. In our house, as in many of yours, OCD has been a very frightening experience, one that causes Agoraphobia, Depression, loss of self-esteem and a near Anorexic behavior that is most concerning. In future episodes, we will treat aggressively medically, and are hopeful to have a medical team to support whatever that may mean. For this current episode, we are trying a new regimen of stronger dosing to see if that will help. But in the meantime, having tools to get through each day have been critical.

 

I always hope that my suggestions about ERP are taken in the spirit that they are intended. For regular OCD, this can be a cure. For PANDAS OCD, it can be a wonderful coping tool in the midst of darkness. I do not present this to minimize the medical symptoms or medical treatment needs. I realize that ERP is time consuming and difficult. But our entire lives stop when we have an episode, so we have lot of opportunity to practice . Because we were misdiagnosed for a while, we were "lucky" enough to have a lot of experience with ERP. We read tons of books, hired a top therapist, went to conferences and seminars. We could not understand why she would lose all her gains so quickly when a new episode came along. I would never suggest that ERP is a cure for PANDAS. But it is a great coping tool along the way. And my intent is only to share those learnings with those parents so that kids can feel a little empowered, and along the way "beat up a little OCD", since we were forced to learn so much about this therapy.

 

I learn a lot here, and print out nearly all of Buster & EAMom's studies. I am very glad to have these with doubting doctors, and feel that I am able to educate the receptive ones in some pretty major ways! Thanks again.

[Megs_Mom]

With my son, he had residual OCD. His PANDAS episode was over. I could tell. But OCD stayed the last time.It didn't eventually disappear on its own like the first 2 episodes. It wasn't until we took the residual OCD as OCD did we overcome it. Once I educated myself on OCD and tackled it head on,he actually got better rather fast and the residual OCD disappeared. CBT would not have worked for us. I think what we did was like ERP. Not sure if it's exactly that since I pretty much formulated it on my own. Also, learning more about OCD and all it may encompass, helps all of us recognize early signs that a PANDAS episode might be starting.

 

Exactly what I was trying to say (but you did it in so many less words!) For anyone new to this therapy, ERP is actually a form of CBT (Cognitive Behavorial Therapy). But it is not the same - it's like a subgroup of CBT. So a lot of people say use CBT, when actually all you really need is the ERP part. The only CBT we use outside of that, is the preparation to do the ERP - essentially education about anxiety and OCD, so that they are confident to use the ERP tools. Homemade ERP is a great way to go, especially with young kids, as they respect their parenst as the role model. I've read your posts a lot, and it was definitely ERP that you were using. As kids get older, they have to do better at the tools, as they won't do as we tell them to as much. But when our daughter was younger, just directing her on the appropriate behavior was often enough. In an untreated PANDAS episode, we needed professional therapy. I am hopeful that with proper medical care, future episodes will be mild enough to do the work at home.