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Salm

To short treatment with antibiotics?

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My son 7 years suddenly started with tics and some hyperactivity. After 3 weeks on antibiorics tics disappear and we stopped with antibiotics, he was not positive on streptococus. Now tics are started again and he is just started on antibiotics.

I have read on one pandas page that If you stop first time with antibiotics to early then second time on antibiotics can be without any effect. Do you know sommething about this?.

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I don't know about stopping abx too early, but we have had the experience of going back to an abx that worked, and having it not work like it did before. Another parent that I know has reported this:
"when we first started with amoxicillin it worked very well - when we stopped using it and then came back to it - it no longer did anything. Augmentin did well for a good long time, then that too stopped working."

I am not sure of the timings for the experience above. I always thought that with our own experience, that because of the time span, it may have been a different bug causing the flare, so that it was just a case of the wrong abx for the new bug. But I have also heard (indirectly) that Dr. K (a long-time PANDAS/PANS doctor in Chicago) believes that eventually, all abx fail (meaning, you have to keep on trying others, and then eventually if you run out of good abx options and don't get relief, IVIG is the solution).

 

In your case, you probably are still dealing with the same bug given the short time span. If it doesn't work, don't hesitate to push for a different one.

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I would refer you to Dr. Swedo's research out of the NIMH, but I believe she has documented and extended temporal relationship (longer time period between exposure and bloom or rebloom of symptoms) with subsequent strep infections. In other words, as I recall hearing her speak at a conference, the first strep infection may inspire psychiatric symptomology fairly quickly (within days or weeks). But the more repeated infections and/or exposures, the more extended the timeline tends to become so that it becomes somewhat more difficult to maintain the temporal evidence.

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After our initial onset back in late 2013, my son was put on azith and it seemed to be effective against the OCD thoughts (my son's only real symptom through our journey). We stopped after the first month or so and he stayed good for over a year. When he flared, we went back to azith and it seemed to bring things back to normal quickly. However, in 2015, it seemed to have no effect, even after 30+ days, and we have been through a variety of abx since then with no success. I am now thinking we may need to address some immune issues and work to clear any metals or treat any viruses. We did test hetero a1298c, but many feel this does not need to be addressed specifically. Our high number has been myco p, which is what we used the abx for. However, we just tested 29 for HHV6. Dont' know if this number requires anti-viral...but plan to ask. We are now doing minocycline, which has been tested to help with OCD, but not seeing any results thus far. Anyone decide to move from abx and treat other issues to build immune system (metal, etc)?

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We also found abx working at the beginning, but not so much years later. Although I didn't hear/see it myself, I saw someone quote Dr. K. as saying that "eventually, all abx fail". I don't know of other PANS/PANDAS specialists that have said that, but I certainly haven't seen all presentations by all experts. Maybe they fail because after eradicating all bacterial infections, you still have non-bacterial ones.

 

Yes, looking at other things (virus or mold triggers, heavy metals) is definitely warranted, and ultimately, if you are convinced there aren't any ongoing infections, ivig or plasmapheresis if you can get it.

 

One caution I would have with heavy metals is the validity of tests under provocation. Specialists that give something biochemical to provoke heavy metals out of their hiding spaces and then charge high rates for onerous programs to solve the problem have been successfully sued for ignoring clear test protocols. You can read more about that here:

http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html

 

(Proper) heavy metal testing is listed as a work up by the PANDAS Physicians Network, though.

We do believe our child's immune system is wacky, but haven't found what we would consider a "somewhat researched and proven" way to solve the problem other than the ivig and plasmapheresis that is very difficult for us to get. So, in desperation, we roll the dice with various supplements to see if they might help in the same way that someone else has anecdotally reported that it helps them. A sad situation, but it seems like the best we can do.

 

Have you seen anything else for solving this immune dysfunction?

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