eljomom Posted March 3, 2011 Report Share Posted March 3, 2011 I am really curious how many people have had their entire family either cultured or titers drawn? I keep hearing about it, but my (well-respected) pandas doc has not ordered this, and neither did the I.D. doc she sent us to. I know in our case, we are now PITAND, but could have started PANDAS, or could still be, as noone else has been checked. Link to comment Share on other sites More sharing options...
laure Posted March 3, 2011 Report Share Posted March 3, 2011 I am really curious how many people have had their entire family either cultured or titers drawn? I keep hearing about it, but my (well-respected) pandas doc has not ordered this, and neither did the I.D. doc she sent us to. I know in our case, we are now PITAND, but could have started PANDAS, or could still be, as noone else has been checked. Our PANDAS doc tested the family for strep titers. 2 showed up a little high, so he put them on 2 weeks Augmentin. We saw no difference either in them or my daughter with PANDAS/lyme. Good question though. Frankly I am afraid to test all for lyme. I have my hands full with one kid with lyme. If I learned any others in the family had it, I might go over the top! I think if one shows no real symptoms though, it is just another expense. I believe, like epstein barr or herpes, one would always show up positive if it has ever been contracted, but not necessarily active at this time. In that case, I guess you would just know to watch for symptoms if ever there were any... On the other hand, if you show symptoms, you should definitely get tested. Other folks on the lyme forum feel the whole family should get tested for lyme, and I would be interested to hear their rationale on this for my own education. Link to comment Share on other sites More sharing options...
SSS Posted March 3, 2011 Report Share Posted March 3, 2011 (edited) I had all 5 of us who live here throat cultured, grown, and all titers pulled on all of us. Every single one came back normal. I needed it done for my peace of mind. Edited March 3, 2011 by S & S Link to comment Share on other sites More sharing options...
Kayanne Posted March 3, 2011 Report Share Posted March 3, 2011 Yes, we have the whole family tested if one is positive. I see it as getting control of the situation ASAP. We usually do the rapids. My ped's office has a really sensitive test, and the doctors themselves do the swab. We have done cultures. In 2009, after 3 rounds of antibiotics, I insisted that my children get retested after finishing. When the rapids were negative, I asked that they do a 72 hour culture. My PANDAS daughter had tested positive on the rapid for a 4th time, so she was being treated with clindamycin and didn't get a follow-up culture until later. When she did, it was negative. All through the rest of 2009, I insisted on a back-up 72 hour culture even if the rapid was negative. They were always negative. When I was done my 3 rounds of antibiotcs in 2009, I insisted on a culture to confirm that the infection was gone. My husband had several rapids and 2 cultures during that time--all negative. He felt he had a constant sore throat. However, he was weaning off of a psych med, so that may have been a consideration. Last year, he asked his doctor to add in the step titer test to the list of his regular bloodwork. We did this because he has panic attacks, not because my PANDAS daughter had any symptoms. His results were normal. If my daughter wasn't improving with her treatment, then I would have pursued getting the whole family's titers checked. Link to comment Share on other sites More sharing options...
P_Mom Posted March 3, 2011 Report Share Posted March 3, 2011 We were all tested...negative Link to comment Share on other sites More sharing options...
kferricks Posted March 3, 2011 Report Share Posted March 3, 2011 My DH and I were tested and his titers were almost as high as my kid, and I was high for M.pnuenomia. DH was put on abx. My oldest DD and grandchild just moved back in so they are gettingj tested too. Link to comment Share on other sites More sharing options...
Mary M Posted March 3, 2011 Report Share Posted March 3, 2011 When we were going to get IVIg, my argument to the naysaying doctors was that if I was going to invest so substantially in medical treatment that it would be fiscally wise to have everyone in the family tested so that the child did not return from IVIg to a potential petri dish of a household riddled with strep. The doctors seemed to appreciate that so, we were all negative to rapids, cultures and all had normal strep titers with the EXCEPTION of my dh who had elevated ASO and AntiDNAse B titers. He has been on abx for months on and off and retested and on again and off. He is completely asymptomatic with elevated titers that seem to decrease following 30 days of abx. Mary from Michigan Link to comment Share on other sites More sharing options...
Christianmom Posted March 3, 2011 Report Share Posted March 3, 2011 Just had my whole family's titers run: ASO, DNase, mycoplasma, streptozyme -- all the tests my PANDAS son failed. We had already reached the family deductible so it didn't cost us anything so we probably had more tests run than we might have otherwise. Have not seen the results yet, but Dr. T said my daughter had high ASO, DNase, and mycoplasma titers. For some reason he said not to treat it since my daughter is almost 19 and does not have any PANDAS symptoms, but I am going to have her treated anyway. To be fair to Dr. T, we really didn't discuss it long enough because it was not the real reason we were talking. I will definitely talk to him about it again once I see all the results. I didn't bother with the strep swab because my son is asymptomatic and none of us have any signs of strep or any illness for that matter. It was my suggestion to have the titers run. I think these PANDAS doctors are so busy, and frankly after awhile all our cases look so similar to them, that they just forget to cover all bases. As soon as I e-mailed him suggesting the tests, he e-mailed right back with a script. Link to comment Share on other sites More sharing options...
nicklemama Posted March 3, 2011 Report Share Posted March 3, 2011 My dh had his ASO and DNAse tested at his annual physical this year. Negative. My physical is next week and I plan to have it ran for me. Link to comment Share on other sites More sharing options...
momcap Posted March 3, 2011 Report Share Posted March 3, 2011 We tested the whole family: 3 out of 5 cultures positive for strep. I think the timing was a fluke because they all got sick the next day. And 3 days later the 4th one got it too. Only PANDAS DS had elevated ASO (in the 500s) - all the rest were normal. Link to comment Share on other sites More sharing options...
thereishope Posted March 3, 2011 Report Share Posted March 3, 2011 (edited) Every time someone is my house has strep, all family members get tested. We began this with the first strep infection my PANDAS son had. That was our first known strep infection in the house.This is how we found out my non-PANDAS kids are asymptomatic. The most we have done, though, are rapids and cultures. I didn't discuss this with any doctor before doing it. I just make appts with the ped to get them tested and appts with my husband and mine general doctor. I am really curious how many people have had their entire family either cultured or titers drawn? I keep hearing about it, but my (well-respected) pandas doc has not ordered this, and neither did the I.D. doc she sent us to. I know in our case, we are now PITAND, but could have started PANDAS, or could still be, as noone else has been checked. Edited March 3, 2011 by Vickie Link to comment Share on other sites More sharing options...
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