Dedee Posted April 14, 2011 Report Posted April 14, 2011 My oldest son has had PANDAS for nine years. We had tonsils and adnoids removed four years ago and he has been on amoxicillin since that time. He does pretty well, still has some issues with eating, a little moody, but overall a good kid with transient mild PANDAS flares. His little sister has developed PANDAS six months ago and we have been testing the entire house for strep, myco p., etc. My son's strept titers came back and his ASO was 567, and Anti-DNase B was 340. The ASO was flaged as high but the Anti-DNase wasn't. When you look at the normal reference range though, it appears that his Anti-DNase would be high. It appears that it should't be higher than 170. So why would they not flag it as high? My pediatrician read it as normal because it wasn't flagged. I realize that these are not terribly high numbers compared to some others. Before his tonsils came out his was 1760. But still, I would like to know if we need to switch his antibiotic? Does he still have strep hiding out somewhere? Since he does have lingering symptoms that we have never been able to get rid of (eating issues mainly)should we look at being more aggressive with his treatment. As he is getting older, it bothers him more that he has different eating habits than his friends and it is starting to interfere with his social interactions. He has been seeing a counselor for over a year to help him over come some of these problems but so far not much progress. We are checking in to a CBT program for him this summer. Still, if this is related to an infectious process, should I be more aggressive on that end as well? He is 15, and has had PANDAS since he was 6. I appreciate opinions. Please help.......
Kiera Posted April 15, 2011 Report Posted April 15, 2011 Sorry I can't help as I too am confused about titers! My ds 8's titers were elevated last summer when diagnosed (not terribly high). He responded well to antibiotics, we never checked titers when he was asymptomatic, to see what his baseline is. Now he's in exacerbation again and the titers are still elevated so my question is - what does this all mean? Does it mean he's a carrier? Is our goal to get the titers within normal? What if he's asymptomatic with elevated titers, should we worry about that? Hope someone else can chime in with answers.
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