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Hi, I'm wondering if a "typical" round of antibiotics for treatment, of a current strep infection in a child dx with PANDAS will actually help with the psychiatric sx's? If so..How long does it take before improvement is noticed? Also, if they are treated prophylactically do you see a drop in these symptoms significantly or does it tend wane as time passes? Thanks in advance for any information:)

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I'm sure other folks will chime in, but you'll see varying degrees of sucess depending on how long the infection went untreated, as well as the type of antibiotic used to treat. But I think that a universal theme you will see is that a "typical" course of abx will NOT normally halt an exacerbation.

 

You'll often hear the course of PANDAS described as "waxing and waning" - while the onset is extremely abrupt typically, unfortunately it doesn't turn off quite so easily.

 

In our case, with our son, his first PANDAS flare lasted 6 months before he was dx - since he shows no signs of strep other than the PANDAS symptoms. We thought it was a phase - or just the "terrible twos". When he was dx, the doctor gave him a 30 day course of azithromycin, we saw improvement with the physical aggression within about 7 days, and the tantrums became "manageable" after about 10-14 days on the abx. By the end of the 30 day course, we did see dramatic improvement in the psych symptoms - but the OCD and ODD were still very severe.

 

We were lukcy that we saw relief with the first abx that we tried - others have to try various abx before finding the one that is right. Ultimately, he tested positive for strep while ON the azith - so we had to switch things up.

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Welcome! This forum has been a great source of information for our family....

 

Unfortunately, we did not see any improvement in dd4 with abx for psychiatric symptoms. She has been on pen v proph. for approximately 8 months, plus she had done a 14 day trial of azith (which for us was a disaster with abdominal pain going through the roof). She has not tested pos for strep since starting the pen v, but the pandas symptoms are easily triggered for her by any other virus/bacteria she encounters (I can only imagine what strep would do...). She had a breakthrough infection of chicken pox that pretty much leveled our house for a week.

 

I feel like a downer - I know others have had great success with abx. Our greatest success to this point (dare I say we have finally hit baseline for three weeks in a row! Hurray!! Even her ezcema is gone...) has been working on strengthening her immune system with a ND (hydrotherapy treatments, nutrition). Not for everyone, but dd has had a hard time with abx (abdominal pain, horrible teeth, etc). We are actually thinking of taking her off completely due to side effects.

 

The one thing I have learned so far is that we will need to flex and adapt the treatment according to what she is presenting at the current time. I have let go of the idea that there is going to be a "permanent" fix to this - I think that as she grows and symptoms develop, we will be changing things up to match.

 

Good luck!

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Welcome to the forum and please keep poking around as I'm sure you'll see more and more stories of experiences that will ring bells for you as time goes on.

 

We had nearly immediately behavioral improvement within 48 hours of starting Augmentin, even though my son was classically asymptomatic with respect to strep. Every culture we did came back negative, and he had no documented sinus issues, etc. We only finally got a PANDAS dx following an ASO test which revealed his titers to be more than 5 times higher than the top of the lab's range.

 

My DS went for some six years without a PANDAS dx, though based on his behavioral and medical history, it's clear to us now that he suffered from it for years before the actual dx. In the end, we wound up sticking with abx for a full 2 years before we weaned him off slowly, once and for all (knock on wood). After the first 30 days on abx we took him off, and he declined behaviorally; that pattern repeated more than a half-dozen times over that first year to the extent that we decided to just leave him on, uninterrupted, and see what would happen.

 

While he made almost immediate behavioral gains when he first started abx, he frequently plateaued over those two years and we often came to a point where we thought he'd stopped gaining ground altogether and that the abx were having no impact anymore. That's when we would try to take him off, only to have him regress. I've kept a journal for the last 3 years, though, and as it turned out, even during those periods that we were sensing a plateau because his improvements lacked the drama and/or magnitude of the initial ones, the journal entries definitely point to continued gains nonetheless. They were just smaller, quieter, but definitely a continued pattern of leaving behind some of his "stuck," obsessive-type behaviors.

 

Did my DS need the abx for so long because he'd gone for some 6 years without a dx, carrying strep around? Or did he need them so long because he was so much older by the time we found PANDAS (12)? Did he need them because we elected not to do IVIG?

 

Every case is quite individual, despite the astounding commonalities among many of our kids. Sometimes we just have to follow the clues as best we can when we're making the treatment decisions. Good luck!

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Hi;) thanks to all who responded. That really helps with my understanding of variance and individuality in each of our children. My son is almost 14 now. His onset was at the end of his 2 nd grade year. I took him to the medical university in charleston sc for a mental evaluation. He changed overnight basically....

Overall they dx'd him with TS and sent us home. I was grief stricken with this dx and also had a 3 mos old newborn. I researched nightly for at least a year. We made a personal decision ,not to treat medicinally. ( other than clonidine) which helped with motor tics. The effect from clonidine for several years ,finally waned and we had to homeschool a couple of years. I have just recently,in the past year , started making the strep connection. My sons rapid strep is usually positive but he is totally asymptomatic. As I am becoming informed about this disorder... I see a lot of wasted time, dr visits, troubled times , etc that maybe I could have warded off??

However, I do remember looking at pandas during my research and SC and huntingtons among others. I did not stay there long because I had a firm dx from a dr. I guess this proves that we can't depend on them, we are their advocates and should keep fighting until they get what they need.

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