We're back, compulsively urinating

[TracyRee]

I've been off the board for a while, buried in denial. Ds's pandas started when he was three with him suddenly compulsively urinating. We went three weeks not knowing what was going on, getting test after test. Found a little info on panacea and insisted he have a strep culture. Came back positive and his compulsion disappeared after 24 hours on antibiotics.

 

A year went by and we were scared, but nothing happened. Then school started and strep infection after strep infection. He never had any more OCD behaviors, but he was a different child. Angry, full of anxiety, defiant.

 

We put him on prophylactic antibiotics for about a year and saw no improvement.

 

In December we decided to take him off antibiotics. We hadn't seen any OCD since onset and his behaviors weren't improving. We thought maybe the urinatiion thing was a fluke, that his other behaviors are all due to his Asperger's, even though they don't totally "fit"

 

Since March, he's had four confirmed strep infections, we think five in total.

 

We were still in denial. Just a kid that can't fight off strep. We were going along with our local pediatrician that knows nothing about pandas and trying course are course of antibiotics and considering tonsillectomy.

 

Yesterday the compulsive urinatioin started again. He's running to the bathroom every minute or two.

 

So I'm back. I'm accepting that he does in fact have pandas and it's time to get serious on getting him in remission. I wonder how much of his Asperger's is really pandas.

 

Tomorrow we see his DAN doc that knows a bit about pandas. He's already written a script for 10 days of augmentin. Im considering asking for a steroid burst as well.

 

Lots to catch up on and relearn.

[smartyjones]

I wonder how much of his Asperger's is really pandas.

 

i am extremely confident that if not for a very savvy behavioral therapist, my ds7 would have been put into the asperger camp. he wouldn't technically qualify for the diagnosis but had behaviors that would have pushed him down that road. i usually say 'asperger-like' behaviors.

 

good luck in finding answers with the DAN.

Edited June 16, 2011 by smartyjones

[Ozimum]

We've had good results working with a good DAN dr. Anxiety, anger, OCD, 'drop out' moods, fatigue, odd urinary stuff - all ramped up in exacerbation and always coincided with colds or flu. The DAN has helped sort out ds gut issues, and hence his immune system so that he now has a chance of fighting off the colds and is as healthy now as I've seen him for years. Our ped didn't even want to think about his health, just wanted to put him on meds. Grrr. The DAN dr did some useful testing and put him on a sequence of antibiotics to deal with strep throat as well as overgrowths in his gut (including a different strain of strep), along with Vit amd mineral supplements, probiotics and a gut healing diet (and a very low dose of an ssri - beware these as they can activate some kids) and ds is now in a really good place, and not currently on antibiotics. The Asperger's diagnosis has helped him get extra accommodations at school. I'm hopeful that most of the things we thought were Aspie will continue to abate. So far so good!

 

Good luck!

[kimballot]

If he is getting one infection after another you may want to get a full immune work up. My DS14 (PANDAS since toddlerhood)had normal immune workups when he was younger, but started to show some deficiencies about 4 years ago. The doc ignored them at the time, but an immune workup during an exacerbation last year showed increased deficiencies. It might be worth checking on for your son - even if it is only to establish a baseline.

[TracyRee]

Thanks everyone. I'll definitely get some good probiotics and see what he suggests for his gut/immune system.

[LNN]

Welcome back...in a sad sort of way.

 

If you've been gone long, you've missed the conversation that's taken place about lyme disease. Some parents have found that neuro-lyme and/or bartonella (another tick borne illness) looks a lot like Pandas in our kids and it's possible that the lyme is triggering a PITANDS response. You certainly have enough confirmed strep to stay on the PANDAS trail and it's possible that the prophylactic dose of abx wasn't high enough or frequent enough to make a dent in the aspie-like behaviors that didn't go away. But I just wanted to mention the lyme issue because it's been a large topic of conversation that you would have missed. It too is implicated in inducing aspie-like behaviors. One of the Pandas doctors now routinely tests for lyme and mycoplasma as part of his blood work. So if behaviors continue unresolved after a time of treating for Pandas, you may want to keep it in the back of your mind that members have discussed several other culprits beyond strep that need to be eradicated.

 

I hope your DAN is able to offer some help. I know this isn't where you want to be spending your time, but hopefully you'll be able to get help quickly and start the healing process.

[airial95]

My son was young (just over 2 yo) when he was dx with PANDAS, and our pediatrician suspected he had Aspberger's as well - he was showing all of the classic signs, but he was still too young for a conclusive dx. In the meantime, we started to treat the PANDAS. As we began to manage the PANDAS, ALL of his Aspberger type symptoms went away. He's almost 4 now, and we're still trying to manage the PANDAS and recurring strep infections, but we've found when he'd completely clear of strep, he shows no signs of any autistic behaviors whatsoever.

 

The frustrating thing in our case, is that is immune workups are all distressingly normal. Yet he's had strep like 11 times in the last 18 months or so. Kimballot - it's interesting to hear that your son just started showing deficienies a few years ago after years of dealing with this. I know our pediatrician was hesitant to draw blood work early on, saying that his immune system was still so young and developing that the tests wouldn't be reliable, and I can't help but wonder if that's still what might be going on with him. There's OBVIOUSLY some sort of problem - 10 or so infections in 18 months (15 months were while on some dose of abx or another).

 

On that note, I agree that your proph dose of abx may not have been high enough. We were on a proph dose for most of 2010, and he still mangaged to get strep at least 4 times, and reacted severly to exposure (even when he didn't catch strep). We were also on a full dose of cefdinir for 90 days this year, and he got strep 3 times while on that...so even if they're on the abx, you still need to stay on top of it.

 

Good Luck!!

[TracyRee]

Thanks all. The visit went well, doc recommends tonsillectomy, antibiotics and ivig 3 months after tonsils out.

 

Glad to have a plan at this point.

 

He's been tested for lymes and mycoplasma in the past, but not bartonella.

Edited June 16, 2011 by TracyRee

[jenbug]

Tracy--glad to hear you have a plan--I hope things get better for your DS soon. We are just now getting our initial bloodwork done for possible PANDAS, so no plan here yet. GL!