thenmama Posted November 27, 2012 Report Share Posted November 27, 2012 Ds seems to have high and low spots most days-- or what seems like cruising mode with some pronounced rough spots/lows. This is both pre and post- IVIG (we're 2 weeks out). For a while I suspected his breakfast foods were contributing in some way because he (generally) starts the morning in a good place, then around the same time late morning every day, he hits a difficult patch. We're in one right now-- fussing, unhappy, OCD, unable to tolerate anything he doesn't like/expect, absolutely everything and everyone irritating him and setting him off. One of his coping mechanisms when his OCD is very bad is to launch into a spectrum-like perseveration mode-- using some interest/activity that he knows he can fully immerse himself in to "block" his OCD thoughts. He tends to do this when the morning rough spot hits, and he usually has another rough spot and/or launches into that same mode for a while in the late afternoon/before dinner timeframe. I don't know why I never wondered about this before, but this morning it hit me-- he takes his am abx (Clinda) with breakfast and his second dose with afternoon snack, which makes a pretty consistent period of time between when he takes it and when both rough spots begin. He takes the third dose at bedtime, so he's asleep before that amount of time has passed. He doesn't do this after other snacks, lunch, or dinner, so I don't suspect it's a general pattern related to eating and I've never been able to isolate food-related triggers. Grasping here, but has anyone else ever noticed a relationship between their child's abx dosing and either a PANDAS symptom uptick, or other mood/behavioral issues? Other thoughts or suggestions? Or could I be overthinking this entirely and maybe it's just normal to have this sort of fluctuation? And if you want to remind me of what I already know-- that 2 weeks out from IVIG is too early to expect much-- feel free:) Link to comment Share on other sites More sharing options...
thenmama Posted November 27, 2012 Author Report Share Posted November 27, 2012 Forgot to mention that I plan to do the most obvious thing: delay his 1st abx dose tomorrow morning and watch to see if anything changes. Link to comment Share on other sites More sharing options...
T_Mom Posted November 28, 2012 Report Share Posted November 28, 2012 Hey Thenmama, I am curious about the timing and "ups and downs" issue, w/ abx, interesting. I really just wanted to write to encourage you to keep the "6-12" week vision for post-IVIG effects, time...it takes time. all the best to you - Link to comment Share on other sites More sharing options...
thenmama Posted November 28, 2012 Author Report Share Posted November 28, 2012 WOW-- it may not have been such a reach to suspect the Clinda, after all! This morning I didn't give his am dose with breakfast. We started (home)school and had an absolutely delightful morning. The glimmers of improvement we think we've been seeing post-IVIG were all there-- the speech/expression, engagement, his interests broadening again, and even the one that we'd seen but then backslid--his willingness to acknowledge his PANDAS OCD. We passed the usual meltdown/deterioration time, had snack, and I gave his Clinda. Returned to schooling. All was still going great and then it flipped like a switch--right about the same amount of time his dosing had been delayed, so also the same timeframe I usually see between breakfast dose and the onset of issues. He was instantaneously in the full grip of his OCD, everything setting him off, fighting (vs. me, not his PANDAS or its issues), raging, melting down, etc. Obviously I'll want to test this more than once, and revert to the old dosing time to double see if the pattern holds, but I was just shocked to see how this trial played out-- because I really thought I was grasping at straws and doing this more to cross it off the list than anything else. And I'm not sure if it does continue to show a relationship to the abx, if that's better or worse? Is it a side effect of the abx itself, or a symptom of it working somehow on his system-- like a herx? Would a herx type of reaction be timed like this, or would it be more of a sustained agitation for a period? And what implications might this have re: his recent IVIG-- which also makes it trickier (in my mind, anyway) to figure things out. And thanks for the reminder to hold strong through the post-IVIG phase, T.Mom! One of those things I know, but knowing doesn't seem to make it any easier! Link to comment Share on other sites More sharing options...
Pandasphilly Posted November 28, 2012 Report Share Posted November 28, 2012 Yes I'm seeing a pattern as well. Especially right after meals. I've been wondering about his a long time. Trying to figure if it's anribiotic timing related? Food related? Need to make some adjustments to tell Link to comment Share on other sites More sharing options...
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