need to urinate

[bmom]

My son I believe to be PANDAS. There have been 3 times that he has had this need to urinate frequently (every 3 seconds or so). The first time was in the day and he was back and forth. I took him into the doc and he was positive for strep. It stopped when he started antibiotics. The second time he was on antibiotics to see if it could alleviate tics. During this time he came down with a sore throat, fever, etc. I started giving him Motrin for fever. He was negative for strep and still on antibiotics. During this time, one night right as he was going to bed, he started doing the urinary thing again. It was only one night. Then, when he had his tonsils out, on antibiotics and Motrin for the pain, not sick, he did it again before bed one night. I started to wonder if it was the Motrin causing it as he has been on antibiotics before and since and not done it. Anyway, now I am worried about my daughter. She has done this before bed a few times. Hers does not last hours like my sons. There have been times when she would go 3 times in a row and then settled before bed. It was one right after another. Last week she had her tonsils out due to trying to be cautious as I do not want to have to go through the PANDAS thing again. The ENT said her tonsils were large and looked infected. She had them out last week and placed on antibiotics. The culture came out that they had Staph in them. Twice this week before bed, she has had to pee a few times before settling. She says it tickles. She will pee 2-3 times and then go to sleep. This was while she was on antibiotics so I dont think it is a bladder infection. I am praying it is not PANDAS. Could it be something else. When your kids go through the frequent urination, is it only at bed time? Do they feel a tickle or no? My son said when he had this, it is like the peepee shivers. Any thoughts? My daughter doesn't seem to exhibit other symptoms like my son does (tics). but she is only 4. She has not been on Motrin and it has been several days since she took the pain meds. Has anyones children done this before bed and it not be anything -Pandas,etc?

[EAMom]

Hi Bmom,

 

I thought the motrin (ibuprofen) helped my dd's pandas when she was bad (ocd, anorexia nervosa), although I don't think it affected her tics. I suppose if there is a dye or something in the motrin it might make tics worse, if your child is sensitive to that. You can get a dye free formulation of ibuprofen, liquid or pills. I think the motrin helped dd's brain inflammation (it's anti-inflammatory). Also, she was on azithromycin when it helped so maybe there is something to the combo. of the 2 drugs.

 

What antibiotics were you on? When dd was on amoxicillin she cultured neg but the amoxicillin didn't help her pandas symptoms at all. Dd (then 7.5 year old) was on amoxicillin about 3 mo. According to Dr. K (chicago) amoxicillin is useless against pandas...I would agree with that. The culture will likely be neg on antibiotics but there could still be strep there hiding out (intracellular) or in numbers too small to culture. Also, it is possible that even once the strep is gone, there can still be symptoms from circulating antibodies (anti-brain) or residual brain inflammation. Azithromycin was what really turned my dd around after 5mo. of pandas...but even that wasn't an overnight improvement. Mood took 3 days to improve, OCD/anorexia nervosa (this was our big concern) 10days, tics (which was the least of our worries) took 6weeks. I think her brain was very inflammed...Azithromyin is anti-inflammatory (used for cystic fibrosis for this), immunodulatory, and can get intracellular strep.

 

Re urination...when dd was in preschool she had an episode where she suddenly started acting like she had a bladder infection (no tics or any other pandas symptoms that we noticed) during the day. The ped. checked her urine and said she didn't have a bladder infection (no throat culture done of course). This was an overnight change...before that she was a kid who would pee 2-3x a day. I brought her into the ped. 2-3 x who insisted it was nothing. Eventually she improved during the day (after a couple of weeks) but after that she still had the behavior of wanting to urinate multiple times before bed. This actually went on for years. Although now that I think about it, she's not doing it now...so maybe the azithromycin is helping that too.

 

It wouldn't hurt anything to have the doc check for a bladder infection etc. in your dd though...just to make sure you're not missing something simple. It could be that she has an bladder infection that is resistant to the antibiotic she was on.

[lurker]

Bmom,

 

I know too well what it feels like "waiting for the other shoe to drop." When my son developed a mild facial tic, I read everything I could on tics. The next week, in a parking lot, I saw him bend down and touch the ground with his index finger and then stand back up; then he did it again. I almost passed out because I had just witnessed his disorder escalate into a multiple complex tic. (As it turns out, he was just a 5 year old who bent down to squish an ant and didn't get the job done the first time.) I guess my point is, yes, it is entirely possible that this isn't a problem.

 

My daughter (not the kid with tics) has done this (multiple bathroom trips at bedtime) a couple of times. I have always written it off to "bedtime avoidance." In your daughter's case it could be (I'm just guessing here) that you have been inundating her with fluids due to her throat surgery so she has to pee more; normal anxiety at bedtime because she is 4 and is starting to imagine monsters; she isn't going so much during the day because she is so busy playing, and she is having more urges when she starts to wind down during the bedtime routine; could she have noticed her brother getting extra attention for this when it happened to him? (I've actually seen my kids fake "copycat" injuries when their sibling is hurt and they are being completely ignored.)

[guy123]

I have three things to contribute:

 

1. I laughed when you mentioned "pee shivers." It seems like most, but not all, people (males) have experienced this phenomenon. There's even an article on wikipedia about it. Sorry that's not really relevant.

 

2. There have been exactly two times in my life where I have felt like I needed to pee every few seconds. Both times were when I was a kid. I would feel like I needed to pee, and then go pee, but as soon as I would finish, I would feel like I had to pee again. So a few moments later I'd go back to the bathroom and try to pee, and a few drops would come out. And then a few moments later I'd feel like I had to pee again, and repeat this cycle for 30-60 minutes. The first time it happened I was like 5 or 6 and I freaked out and asked my mom what was going on. She said it happens every once in a while and the cure is to drink some water and hold it in for as long as you can and then go pee (a normal pee), and then that will "reset" everything in your body. So I drank some water and went back to bed, luckily didn't wet the bed (come on, I was like 5 and went to bed feeling like I really had to pee!), and in the morning I woke up with a bladder about to burst, went and had a nice long pee, and everything was back to normal.

 

3. You said she said it "tickles." Every once in a while (maybe once every year or two) when I'm done peeing it's like something gets messed up and the stream doesn't get cut off right or something, and it leaves this weird sensation at the end of my urethra that "tickles" except it's more like a burn (it's not an STD!!!!!). The peeing itself feels fine, and this doesn't start until the very end. It just seems like something gets out of whack for a little bit. It usually goes away in a couple hours. This has happened to me rarely since I was a kid.

 

 

So all I'm saying is it could just be a little glitch in your kid's pee system.

 

 

 

 

 

And this is officially the weirdest post I've ever made on a forum hehe.

[lurker]

That was truly informative, Guy! (Really). The last time that happened to my daughter, she was peeing when she heard "last call" for the bedtime stories, and she came rushing in pulling her pants up as she ran. I love the theory about shorting out the "pee system" and needing to reboot it. I never would have made that connection, but I can absolutely confirm it in hindsight.

 

Also, "tickle" is probably about as accurate a description as any four year old can come up with to describe the urge to pee. And to further the weirdness factor of this discussion -- my daughter, when she was 3, had been touching herself "down there" at home and preschool for a couple days. I took her in for a urinalysis to check for a UTI. It was negative. The wise old pediatrician noticed her baby brother sleeping in his carrier and immediately diagnosed her with "penis envy." He was right. I talked to her about it that night, and she confirmed that it was not fair that she didn't have one, fully intends to grow one, and checks frequently to see if it is there yet. That issue has been settled, but she does still hog the remote control .

[EAMom]

Hi Again,

I probably should add that some people do find amoxicillin to be effective for PANDAS...it probably depends on the individual child, how long they've had the strep (or pandas), the strain of strep, etc....but if your child isn't responding to amoxicillin, it would be reasonable to try a different (stronger) antibiotic.

[bmom]

Thank you all for your replies and guy 123 for a few laughs- which seem to not happen much around here lately. My son was on Amox. for 3 months. It did seem to help and we were finally down to no tics until he got just a simple 3 day cold. Now we are on week three of this silly coughing tic- ugh. We switched to Azithromycin 2 weeks ago- not sure if it is helping. My daughter was on Amox. after removal of tonsils. I dont know what to think of the pee thing. It just worries me as my son has done this before and I sure dont want to have to go through these things with her!!!! We have another phone consult with Dr. K this week. I guess I will run it by him.