momcap Posted November 12, 2010 Report Posted November 12, 2010 I am so confused! We heard about PANDAS in August and did an ASO on DS7(then 6) which came back at 512. That was followed by 2 rounds (10 days each) of penicillin which brought a striking improvement. While still on the second round of pen he took a turn for the worse. We cultured the family and ds7 had a positive throat culture, along with dh and ds5. Following that culture we did 2 rounds of zithro, during which he was really sick with fever, headache, stomach pains, puking, sore throat, etc. The second round seemed to settle things down. His cultures after that were negative, but the doctor still put him on amoxicillin because the psych symptoms (irritability, mood lability, OCD) came back after the zithro ended. After 10 days of treatment strength amoxicillin we moved to prophylactic amox. On prophylactic amox he's WORSE than ever. He's freaking out at school, kicking his desk over, ripping up school work, getting stuck on numbers, wearing shorts in the snow, etc. And home is even worse. We retested titers and they are now 539. What does that mean??! Aren't antibodies supposed to drop after treating an infection? Does he still have a strep infection, or is all this the result of the original infection? Has anyone had a similar experience? Is this "normal" for PANDAS? We also got Cunninghams back at 176.
peglem Posted November 12, 2010 Report Posted November 12, 2010 I am so confused! We heard about PANDAS in August and did an ASO on DS7(then 6) which came back at 512. That was followed by 2 rounds (10 days each) of penicillin which brought a striking improvement. While still on the second round of pen he took a turn for the worse. We cultured the family and ds7 had a positive throat culture, along with dh and ds5. Following that culture we did 2 rounds of zithro, during which he was really sick with fever, headache, stomach pains, puking, sore throat, etc. The second round seemed to settle things down. His cultures after that were negative, but the doctor still put him on amoxicillin because the psych symptoms (irritability, mood lability, OCD) came back after the zithro ended. After 10 days of treatment strength amoxicillin we moved to prophylactic amox. On prophylactic amox he's WORSE than ever. He's freaking out at school, kicking his desk over, ripping up school work, getting stuck on numbers, wearing shorts in the snow, etc. And home is even worse. We retested titers and they are now 539. What does that mean??! Aren't antibodies supposed to drop after treating an infection? Does he still have a strep infection, or is all this the result of the original infection? Has anyone had a similar experience? Is this "normal" for PANDAS? We also got Cunninghams back at 176. Just my own speculation- Abx works with the immune system- slows the bacteria down so immune system can get rid of them easier. So, I'm thinking if your child had continued exposure before the titers went down, the immune system would continue to produce the antibodies. Additionally, if you had "hidden" strep, as those boogers die, the exotoxins (streptolisin O) would be excreted as a by product of bacterial death. ASO titer test is a measure of antibodies to those toxins that are excreted by the strep.
MomWithOCDSon Posted November 12, 2010 Report Posted November 12, 2010 Our DS13's titers went up after a few months of abx, also. The ped says that his titers could increase just as a result of being exposed to strep, even though he's unlikely to actually "catch it" while on full-dose abx. Since he's in public school (aka, "petri dish"), that made sense to us. I tend to agree with Peglem's comments on intracellular strep, though, as well. I think that's why a lot of PANDAS kids get good results by being on full-dose abx for extended periods . . . months, maybe even a year plus. Perhaps the longer the strep went undetected (in our case, I think it was close to 10 years), the more opportunity it has to go intracellular. And the more it goes intracellular, the longer it can take to eradicate it because it continues to be released as cells die-off.
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