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Blood Tests "Normal"---now what?


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My son was on azith for almost 8 months, and then he was switched to full strength Cefdinir about 1 1/2 months ago - he caught strep 2x on the azith dose so Dr. Murphy thought it best to switch it up.

 

He only has one tic, and in the grand scheme of things, it's relatively mild - a stroke-like facial grimace. His tic didn't show up until he caught strep this summer. His onset symptoms were strictly OCD, ADHD and ODD. His violent rages were what tipped us off to seek help - it seemed a bit much, even for the terrible twos. Ironically, the frequent urination turned out to be a symptom too - we were so proud that we had him almost totally potty trained by age 2 (we were still working on the poopie of course), but once we started PANDAS treatment, we went back to square one. Turned out he wasn't using the potty several times an hour cause he wanted a Skittle like we thought, it was a symptom!

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My son was on azith for almost 8 months, and then he was switched to full strength Cefdinir about 1 1/2 months ago - he caught strep 2x on the azith dose so Dr. Murphy thought it best to switch it up.

 

He only has one tic, and in the grand scheme of things, it's relatively mild - a stroke-like facial grimace. His tic didn't show up until he caught strep this summer. His onset symptoms were strictly OCD, ADHD and ODD. His violent rages were what tipped us off to seek help - it seemed a bit much, even for the terrible twos. Ironically, the frequent urination turned out to be a symptom too - we were so proud that we had him almost totally potty trained by age 2 (we were still working on the poopie of course), but once we started PANDAS treatment, we went back to square one. Turned out he wasn't using the potty several times an hour cause he wanted a Skittle like we thought, it was a symptom!

 

What dose of Azith. was he on?

 

That's pretty funny about the potty training and skittles btw.

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Yeah, the potty training thing was our only regret in treating the PANDAS :lol: !

 

He was on 100 mg 2x per day for 3 months (which was a full dose for him at the time, he was a little guy, only about 22-24 lbs), then dropped to half that for the last 5 months. It was on the half dose that he caught strep 2x. When he got it, he was given a shot of rifampin and oral cefdinir the first time, and just cefdinir the second time, with pretty quick results back to our baseline (within a couple of weeks). Dr. Murphy prefers Cefdinir overall, and after the 2nd infection, opted to switch him. He's doing okay on it (he's on 150 mg day at 30lbs). We noticed his behaviors are different though.

 

We're hovering at around 85% back to normal, with OCD being our biggest issue. On the azith, as he continued to get better, he would go days without any real issues (just his 1 OCD ritual in the morning), but then he might have an "episode", (a ritual or compulsion that hadn't been around in a while would suddenly come back - not as severe, but it would be back), or a bad rage, and we'd have a few bad days. Our longest stretch like that was about 2 weeks - just before the first of the 2 strep infections.

 

On the cefdinir, we're not getting any long stretches practically symptom free, but when he does have a meltdown or OCD related anxiety, it lasts only a few hours, and he's able to come out of it. He's not on high alert for days as with the azith.

 

It's an interesting pattern, we don't quite know what to make of it. But we're continuing with the CBT and he's starting special ed pre-K in a few weeks that will focus on behavior and social interaction, so hopefully that will help get us the rest of the way from our current 85%. (although - with his sister having strep this past week, he's having a big backslide, but if it's like other exposures, we'll be back to 85% in a couple of weeks - hope I last that long!! :wacko: )

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