Return of obsessive thoughts after PANDAS remission

[veronika47]

Our 17 yo was diagnosed with PANDAS eight years ago after sudden onset of obsessive thoughts and discovery of a previously undiagnosed strep infection. He responded dramatically to antibiotics, with the symptoms receding within 24 hours. He had a few flare-ups with strep infections over the next few years, which were also successfully treated with antibiotics, and he also had occasional smaller increases in symptoms with viral infections that remitted on their own. He's had no symptoms for the past 2 1/2 years, but about 3 weeks ago, he had a sudden onset of obsessive thoughts and anxiety that are very distressing to him. His strep test came back negative as did the blood test for antibodies (ASO, I think??), so our pediatrician does not want to put him on antibiotics. He put him on a low dose of clonazepam in the interim, which helps a bit, but it's not a long-term solution. We are trying to get in to see the PANDAS specialist who diagnosed him, but it will be a while, I think.

My question is: Is there any possibility that antibiotics could help if his tests are negative? His symptoms are so much like the symptoms he had with his earlier strep infections, and very different from the blips of anxiety he's had with viral infections, that I'm really afraid we are missing some strep trigger. Our pediatrician is very sympathetic and fairly knowledgeable about PANDAS, so I think he would be open to antibiotic treatment if I could point him to some evidence that it might help.

Thank you in advance for any advice and information!

[Cmac]

First of all, I’m really sorry this happened. I’m wondering what else was he tested for besides Strep. Myco p? Lyme? In my son’s case it was both strep and myco p that was causing the symptoms.

[MaryAngela]

@veronika47 In 2016 a rheumatologist prescribed a high dose Augmentin for my DS based on severe OCD/tics.  We started the abx before his labs were back.  His strep titers came back normal, but she said ok to continue abx.  After 10 days, his symptoms began to rapidly disappear.  Could it be that he was still reacting to strep exposure too long ago to show up on titers?  Also, she did not test his Mycoplasma titers.  

[veronika47]

19 hours ago, Cmac said:

First of all, I’m really sorry this happened. I’m wondering what else was he tested for besides Strep. Myco p? Lyme? In my son’s case it was both strep and myco p that was causing the symptoms.

Thanks, Cmac. He hasn't been tested for anything else, but I'm going to talk with his pediatrician about other tests on Monday, since it's clear we won't be able to see the PANDAS specialist for a while. He's had a lot of stuffiness over the past couple of months, so I'm also wondering about a sinus infection.

[veronika47]

29 minutes ago, MaryAngela said:

@veronika47 In 2016 a rheumatologist prescribed a high dose Augmentin for my DS based on severe OCD/tics.  We started the abx before his labs were back.  His strep titers came back normal, but she said ok to continue abx.  After 10 days, his symptoms began to rapidly disappear.  Could it be that he was still reacting to strep exposure too long ago to show up on titers?  Also, she did not test his Mycoplasma titers.  

Thanks for sharing your experience, MaryAngela. I wish we had pushed for putting him on antibiotics right away, rather than waiting for the test results. I think we'd become complacent after over two years of no symptoms. I'm going to try to talk with our pediatrician on Monday about trying abx.