MomWithOCDSon

My son, too, had a very quick, positive response to antibiotics, but we did experience a plateau. I'm not sure if our expectations were set too high, or if we were just too hopeful after months of dealing with a really nasty wave of OCD behaviors, but it was hard to see the progress slow in about the fourth or fifth week of treatment. Has anyone else experienced this? We actually became convinced that, whatever good the Augmentin was going to do, it had done it. So after 2 months, we took him off. It took about 10 days, but we started to see the behaviors ramping up again, so we put him back on. I have no idea how long we need to do this until we can safely stop, without him backsliding again. I know in "Saving Sammy," Sammy was ultimately on antibiotics for 4 years, and I've talked with another mom who's son was on them for a year before trending off. Do any of you have long-term experience with treating PANDAS with antibiotics? How long?

This is my first time on the forum, and I'm thrilled by all the discussion . . . several heads are better than one! My son was diagnosed with OCD more than 6 years ago; through some web research, I'd come across PANDAS and asked both the doctor about it. He dismissed it quickly, saying that the research (at least at that time) was not conclusive; when we added a psychiatrist to the mix a couple of years later, he, too, dismissed it. Said he'd actually had a conversation with Swedlow (the NIMH doctor who'd led the pre-eminent PANDAS study) and she'd basically said that strep tests should not be standard protocol for children presenting with OCD. So we went 6 years treating the OCD the standard way: therapy and SSRI's. But at 12, the behaviors went off the charts, and he didn't respond to anything. I found Beth Maloney's book "Saving Sammy" and decided, again, to press the PANDAS issue with our doctors. They finally relented, I think more to shut me up than because they believe it to be real. So, we've been off and on antibiotics for the last several months; every time we go on, we get positive results. Every time we come off, the behaviors start up again, so we go back on. Before we started the first course of antibiotics, we had his ASO strep titers tested, and the count was 438, nearly double the normal range. So, while my son is not an adult, he's not exhibiting OCD for the first time, and he's still responding to antibiotics. My husband also suffers from anxiety and OCD, and he had multiple strep infections as a kid. We've talked about having his titers tested to see if they are elevated, but haven't taken that step yet as both his anxiety and OCD are more manageable on a daily basis than are my son's. I would be REALLY interested to hear about adults who a) get titer tests and find they have elevated levels despite no recent strep infection, and those who, even as adults, start antibiotic treatment and receive some relief. That would blow much of the existing PANDAS criteria away, especially with respect to its treatment.

Pudgeo -- My 12-year-old has had OCD since he was 6; we've only discovered PANDAS and we are trying antibiotic therapy now -- Augmentin -- in keeping with the "Saving Sammy" regimen. We're seeing some results, so we're somewhat hopeful. He's also always had signs of ADHD, too, though the OCD was so front and center that no one ever got far enough to address the ADHD. Also, it would seem that when the OCD/anxiety was under control or "in remission," the ADHD symptoms like distractability, forgetfulness, hyperactivity, etc. would also recede. We had several years of success with Lexapro for the OCD which, like I said, also seemed to address the ADHD. Now we're trying the Augmentin and Luvox for the OCD, and the psychiatrist just prescribed Intuniv for the ADHD. He's making progress in many ways, but still struggling in others. Just keep fighting the good fight!