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Hi all,

 

My four and a half year old daughter finished a two week prescription Augmentin on Friday night. The improvements we saw in her during that 2 weeks were incredible -- sleeping in own bed 11-12 hours a night (vs. night terrors, or waking up multiple times each night, needing us to sleep in with her, etc), nonexistent rage (vs. daily rage, started after a virus in November), big reduction in OCD behaviors. We saw many wonderful moments of having our "daughter back."

Question is, how long is typical to be on antibiotics? The last 2 nights our daughter has woken up a few times overnight. Thankfully no night terrors or screaming. But, as she just completed the antibiotic we are watching her closely for any recurrence of past issues. Is it typical for a kid her age to go on longer than 2 weeks? If she were to have another flare soon, would we expect her dr. to re-up the Augmentin or try a different approach?

Thank you in advance.

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My DS was older than your DD when we started PANDAS treatment but, yes, I think you'll find many, many anecdotes of longer courses of antibiotics being necessary for PANDAs; the reasoning is not entirely scientifically addressed as of yet, but there are a lot of theories out there:  strep or other bacteria still present in the body and thus prolonging the autoimmune response, molecular mimicry tricking the immune system into a continued response even though the bacteria has been eradicated (immune dysfunction), other properties of antibiotics that support our children's healing besides eradicating bacteria (anti-inflammatory, glutamate modulating, etc.).

In the end, most of us use a 30-day course, at a minimum; some of us, ultimately, have kept our kids on antibiotics for prolonged terms; mine took 1,000 mg. of Augmentin XR twice daily for almost 2 years before we were able to successfully wean him off without his PANDAS behaviors returning.

In conference forums and exchanges with the experts in the field, while they prefer shorter courses of antibiotics over longer ones, there is some evolution of the thinking along these lines.  A few years ago, Dr. Swedo (the NIMH researcher who "discovered" PANDAS) allowed that she could support a longer course of antibiotics if necessary.  All told, the primary concern was not antibiotic resistance but c-difficile, a detrimental gut flora that can take over when antibiotics kill off all the beneficial bacteria and is extremely hard to eradicate once it takes up residence.  So keeping your kid's gut populated with good flora, replacing the die-off caused by the antibiotics, is key, during antibiotic treatment.

Good luck!

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