IrishMom Posted December 27, 2017 Report Share Posted December 27, 2017 Hi all, My four year old daughter just started a 2-week course of Augmentin for suspected PANDAs this past Saturday. She is officially 1/4 of the way through her 2 weeks on the antibiotic. She has slept for 3 nights in a row and has stopped blinking - both of those are huge developments. But her impulse control and not listening (husband had to carry her to the car barefoot without her coat on in 8 degree weather today after a 45 min. episode leaving the neurologist) are still very very poor and affect the whole family. Dr thinks we *should* see a "significant" improvement in symptoms within 2 weeks -- so my question is, at what day on antibiotics did things start really turning around for you (if put on a 2-week course like my daughter)? Thank you so much -- Kelly Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 27, 2017 Report Share Posted December 27, 2017 In my experience, the fact that you're seeing palpable improvements, even though they might not be the larger ones you'd hoped for, speaks to the efficacy of the antibiotics. We saw some improvements within a few days ourselves. But it may take longer for the impulse control and meltdown issues to die down, especially given her age and developmental stage; I mean, most "normal" 4-year-olds will meltdown and/or participate in impulsive acts at inappropriate times, so to be contending with that still, especially following an atypical outing (neurology appointment) that was likely stressful for her, isn't surprising to me. We found that our DS (though he was older than your DD -- 12 at the time PANDAS came on full bore) struggled with meltdowns and age-inappropriate behaviors most when he was stressed by an activity or outing that stood out from the daily routine, asked something of him (talking to a stranger, talking to a doctor) that was hard for him, etc. And, unfortunately, that behavior carried over for a bit, gradually dissipating as he got healthier and healthier. I found it helpful to keep a journal during his treatment so that I could keep track of improvements, set-backs, positive things that he'd been able to do before that he'd not done since the PANDAS, but then we saw return bit by bit over time, challenges that he had after diagnosis that he was able to shed over time, etc. It helped me be a little more objective about his progress. Plus, PANDAS healing has something of a notorious "saw-tooth" pattern for many kids (2 steps forward, 1 step back), so tracking things can help you identify patterns, if there are any. All the best! Link to comment Share on other sites More sharing options...
bobh Posted December 30, 2017 Report Share Posted December 30, 2017 Our improvements were so slow and gradual, that we weren't really confident about them until several weeks. Some don't get an improvement, and the recommendation from PANDAS physicians network is to change abx after 14 days if there is no improvement (see the 2nd page of this flow chart: https://www.pandasppn.org/flowchart/ ). Link to comment Share on other sites More sharing options...
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