worriedmommy Posted April 6, 2010 Report Posted April 6, 2010 Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know.
Joan Pandas Mom Posted April 7, 2010 Report Posted April 7, 2010 Nancy, My IgM was elevated but not the IgG on the mycoplasma. My PCP thinks I should not bother treating it especially since I was asymptomatic but my son was and always is asymptomatic. He never had symptoms for strep or mycoplasma, but had both. I'm wondering if I should insist on antibiotics for me too.
sf_mom Posted April 7, 2010 Report Posted April 7, 2010 I would absolutely treat yourself just to ensure your child is safe from exposures. Nancy, My IgM was elevated but not the IgG on the mycoplasma. My PCP thinks I should not bother treating it especially since I was asymptomatic but my son was and always is asymptomatic. He never had symptoms for strep or mycoplasma, but had both. I'm wondering if I should insist on antibiotics for me too.
sf_mom Posted April 7, 2010 Report Posted April 7, 2010 (edited) We did rapids on everyone in the family and all were negative. After our 2nd IVIG, many strep exposures and unexplained family illnesses we tested titers. My husband's ASO was 283 and Anti-DNase-B were 680 and we've opted to treat him with antibiotics to resolve unexplained GI issues/pains he has had over the last two years AND ensure we were protecting our PANDAS child from re-exposures. I highly recommend testing ASO and anti-DNAse-B on everyone in the family for peace of mind. Edited April 7, 2010 by SF Mom
Worried_Dad Posted April 7, 2010 Report Posted April 7, 2010 Ditto!!! I recently found out that my own ASO titer was 303, despite half a dozen negative throat cultures over the past couple of years. There's clearly a genetic susceptibility component to this, and PANDAS families don't seem to display the "classic" strep A symptoms in many cases. We did rapids on everyone in the family and all were negative. After our 2nd IVIG, many strep exposures and unexplained family illnesses we tested titers. My husband's ASO was 283 and Anti-DNase-B were 680 and we've opted to treat him with antibiotics to resolve unexplained GI issues/pains he has had over the last two years AND ensure we were protecting our PANDAS child from re-exposures. I highly recommend testing ASO and anti-DNAse-B on everyone in the family for peace of mind.
EAMom Posted April 7, 2010 Report Posted April 7, 2010 We did rapids on everyone in the family and all were negative. After our 2nd IVIG, many strep exposures and unexplained family illnesses we tested titers. My husband's ASO was 283 and Anti-DNase-B were 680 and we've opted to treat him with antibiotics to resolve unexplained GI issues/pains he has had over the last two years AND ensure we were protecting our PANDAS child from re-exposures. I highly recommend testing ASO and anti-DNAse-B on everyone in the family for peace of mind. Did you treat your dh with a "regular" course of abs? And which one? Or did you do a longer course (a month?).
tapiash Posted April 7, 2010 Report Posted April 7, 2010 Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know. My youngest daughter gets strep once a year. My son who I think has Pandas never has had strep and all his results are negative. Should I have him tested for carrier. He gets colds and coughs but never has had strep. Im goign to explode if I do not have answers soon.
sf_mom Posted April 7, 2010 Report Posted April 7, 2010 40 days Augmentin XR, 2000 m.g. per day. Now, continuing on 500 azithromycin until titers are within normal range (just to be EXTRA safe) We did rapids on everyone in the family and all were negative. After our 2nd IVIG, many strep exposures and unexplained family illnesses we tested titers. My husband's ASO was 283 and Anti-DNase-B were 680 and we've opted to treat him with antibiotics to resolve unexplained GI issues/pains he has had over the last two years AND ensure we were protecting our PANDAS child from re-exposures. I highly recommend testing ASO and anti-DNAse-B on everyone in the family for peace of mind. Did you treat your dh with a "regular" course of abs? And which one? Or did you do a longer course (a month?).
kim Posted April 7, 2010 Report Posted April 7, 2010 This gives a little info on what titers looked like at different points in time in 3 adults ACUTE RHEUMATIC FEVER OR POST-STREPTOCOCCAL REACTIVE ARTHRITIS: A CLINICAL PROBLEM REVISITED http://rheumatology.oxfordjournals.org/cgi...nt/37/3/335.pdf
sf_mom Posted April 7, 2010 Report Posted April 7, 2010 Could have strep residing ANYWHERE in his body, deep in sinuses, ears, gut, etc. You can do a nose swab, stool testing and more and still may not find the strep. Rule out Lyme, Mycoplasma Pneumonia and Immune Deficiencies..... THEN treat based on clinical picture, results and potential AUTO IMMUNE COMPONENT. -Wendy Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know. My youngest daughter gets strep once a year. My son who I think has Pandas never has had strep and all his results are negative. Should I have him tested for carrier. He gets colds and coughs but never has had strep. Im goign to explode if I do not have answers soon.
tapiash Posted April 13, 2010 Report Posted April 13, 2010 Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know. My sons Aso and AntiDNase were normal. He is having a throat culture today. What does it mean if it comes back positive. Would this confirm Pandas since he has all the symtoms. He absolutely has no symptoms right now of a cold, strep or anything else. Can carriers have Pandas.
peglem Posted April 14, 2010 Report Posted April 14, 2010 Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know. My sons Aso and AntiDNase were normal. He is having a throat culture today. What does it mean if it comes back positive. Would this confirm Pandas since he has all the symtoms. He absolutely has no symptoms right now of a cold, strep or anything else. Can carriers have Pandas. My PANDAS child is a carrier.
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