Posted 02 August 2010 - 08:45 AM
I know that urinary frequency is a fairly common symptom of PANDAS, but up until now she has not had it. Does anyone know if there is an underlying reason for this. I thought maybe it was a urinary tract infection, but she's currently on both Omnicef & Azithromycin, so this is probably not the case. I want to be sure I don't write off this as a PANDAS symptom if she really has some sort infection. On the flip side, I don't feel like a million more tests and Dr. visits if this is simply a result of PANDAS.
Posted 02 August 2010 - 08:56 AM
Suffice it to say, once the Ps is treated sufficiently the urinary response diminishes along with the other Ps symptoms, it may take time.
Posted 02 August 2010 - 09:00 AM
Posted 02 August 2010 - 10:02 AM
Edited by SF Mom, 03 August 2010 - 09:28 AM.
Posted 02 August 2010 - 10:12 AM
Posted 02 August 2010 - 09:00 PM
Posted 03 August 2010 - 05:57 AM
Anyway, IMO, OCD often takes over what is a physical urge, and makes it into a compulsion. Here is a post from last year, where we talked about this exact issue: http://www.latitudes...h=1
This was a fairly easy one to deal with, compared with many issues, as it was so important to Meg to get control back. I should add that for a PANDAS child, having medical treatment is such an important part of getting control back. I know some here get instant relief from medical treatment, but we have found OCD to be a little sticky - perhaps because we were completely untreated for so long. But once we were medically treated with abx, fighting compulsions with ERP went from being a heavy weight battle every day, to "taking candy from a baby". I'll actually post a copy of the original reply - I don't have any confidence that I have put this link in correctly:
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.
Posted 03 August 2010 - 06:04 AM
Thanks for your replies. I was under the impression that this was more of an OCD thing, than a real physical need to urinate all the time. It's really tough to deal with b/c dd is ALWAYS saying she has to pee, but doesn't want to. I have been urging her to go and not hold it, but my doing this only makes her angry. However, when she does go, it turns into a 15 minute ordeal (just to pee) b/c she sits there forever feeling like she hasn't gotten everything out. Then she wipes over and over and over to get every last drip off of her. (She will literally wipe 10+ times on the toilet...then stand up and wipe 1-2 more times.) Once all of this is done, she pulls her pants up, washes her hands, and then announces that she has to pee again.
I often found a great clue to whether it was OCD or not, was if my daughter got really mad at me if I encouraged her to do what OCD wanted her to do! She is a smart little thing, and really knew that OCD was making her do things she did not want to do (or preventing her from doing things that she did want to do). So if I then reinforced OCD in some way, it would drive her up the wall in a rage! It took her dad a little while to get ERP therapy, and he could not understand why he made her so mad. She finally took him one of my books and said "dad, I NEED you to read this!". I had been asking him to read it for a while - but the rage of the 7 year old was what it took . If you want a good workbook for your daughter, try "What to do when your brain get's stuck". It's a nice intro for kids - takes about a week to do at night - before introducing them to a specific plan to "beat up OCD". You can take each of the examples in the book and relate it back to her specific issue of peeing and wiping.
Posted 03 August 2010 - 07:12 AM
The good news is that with IVIG it went away. I mean we did flipping the pages of increased urination for a few days but its gone currently.
Posted 03 August 2010 - 07:38 AM
Posted 03 August 2010 - 07:55 AM
Prior to IVIg the frequency had started to diminish (steroid burst effect?, enough long term abx by then?--who knows) but post IVIg the frequency has disappeared.
My dd also had a voluminous amount of urine, even when she had just urinated 15 minutes before. She was checked multiple times for infections and diabetes (both types-mellitis and insipidus--even though she didn't have the other symptoms for those).
Posted 06 August 2010 - 12:52 PM
That was certainly our experience.
Posted 06 August 2010 - 01:07 PM
Ok, so my son clearly does not read the script on any Pandas treatments. Unlike most kids, he got worse immediately following pex (not all day every day, but it was like "flipping pages") and then got better around week 3.
As an interesting note (from Buster's survey) on urinary frequency....urinary frequency is the PANDAS symptom that seems to go away the easiest with treatment (antibiotics).
That was certainly our experience.
Post-IVIG, urinary frequency is driving him nuts and has been for 6 weeks now. We haven't seen this symptom in about 18 months and it wasn't a problem in the weeks leading up to IVIG when he was in exacerbation.
Thank God he at least responds as expected to motrin and prednisone. Maybe someone can make me a tape recording of what he's "supposed" to do and I can slip it under his pillow at night (can't be in my voice - I think he knows how to tune that out )
Posted 06 August 2010 - 01:12 PM
Has anyone tried any of those meds they use for overactive bladder in women? I wonder if they would do anything for your son?
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