Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 I'm kind of frustrated. Here's an example of how important it is to double check on everything (not with Dr. G, but other doctors). Awhile back my son's neurologist requested some blood testing for PANDAS. I happened to talk with a friend about this and she pointed out to me that the testing was incorrect! My doctor requested a DNA(DS), Antibody test. Apparently this test has nothing to do with PANDAS, it's used to help determine Lupus! The correct one for PANDAS is the Anti-DNAse B test. Talk about maddening! Anyways, I just had to vent. I can't help wondering why she gave my son the wrong test. Ignorance? Forgetfulness? One thing I remember her saying after the results came back was " Ah, just as I expected... " Does anyone know how useful the Anti-DNAse B test is for PANDAS (or is this another test like the ASO-titer that only indicates a previous Strep infection, but doesn't help prove PANDAS). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Hi - I've had the same thing happen. Most likely, the lab tech, when she had to code the lab test, simply found the wrong code due to the similarity of the name, so when she wrote that code out, the wrong one was ordered. Perhaps you could get the code in advance next time. If it hasn't been too long, sometimes the lab holds the blood and it could be retested... Also, perhaps you could ask Dr G's office for the lab's code, although I think the codes may vary from different agencies, unlike CPT & ICD9 codes... The Anti-DNase is similar to ASO titer, but acts differently. It rises and falls at a different rate than ASO antibodies, so sometimes you may find an abnormality in one and not the other, depending on when an infection was, how long it has been. You can find a description of it doing a search on the web. It has it's plus's and minuses. While getting PANDAS officially diagnosed may be a goal, I haven't found that to be helpful. In getting the ASO titers or the other, a large elevation could potentially help get antibiotic treatment to bring it down, as long as a doctor is willing to accept the onset of OCD as a symptom. We can still experience OCD without full-blown PANDAS ... perhaps the ASO is most helpful in determining whether infection is still present (or if the immune reaction is extraordinarily strong) for the purpose of getting prophylactic antibiotics to prevent illness or exacerbation in the future, as well as diminish ongoing symptoms right now. The basal ganglia antibodies would show if this has 'crossed over' to a full-blown autoimmunity, at which time you really really need prophylactics to prevent any further insults to worsen the condition. Did you also have an ASO done, and if so, what were the levels? HTH- --- base2 <base2@...> wrote: > I'm kind of frustrated. Here's an example of how > important it is to double check on everything > (not with Dr. G, but other doctors). > > Awhile back my son's neurologist requested > some blood testing for PANDAS. I happened to > talk with a friend about this and she pointed out > to me that the testing was incorrect! My doctor > requested a DNA(DS), Antibody test. Apparently > this test has nothing to do with PANDAS, it's used > to help determine Lupus! > > The correct one for PANDAS is the Anti-DNAse B > test. Talk about maddening! Anyways, I just had to > vent. > I can't help wondering why she gave my son the wrong > test. > Ignorance? Forgetfulness? One thing I remember her > saying > after the results came back was " Ah, just as I > expected... " > > Does anyone know how useful the Anti-DNAse B test is > for PANDAS (or is this another test like the > ASO-titer that > only indicates a previous Strep infection, but > doesn't > help prove PANDAS). > > > > __________________________________________ DSL – Something to write home about. Just $16.99/mo. or less. dsl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Hi , No, the wrong test was ordered. I'll have to get the ped to order the correct one. The ASO titer was high (he had strep at the end of May). The reason I think it would be helpful to know more certainly if it were PANDAS or not is because it would help determine the most effective treatment. If it's PANDAS treatment would consist of low level antibiotics over time and pure OCD would be cognitive behavioral therapy. Although, in a case of PANDAS I can't see how antibiotics would be enough. Sure antibiotics treats strep, but it does not reduce an overactive immune system, for that you'd need immunosuppressants or steroids (and steroids are only a temporary solution). The ASO levels were high. Originally more than 2x above normal level, but after antibiotics they had decreased somewhat, (but were still in the high range). I'll just try and the doctor to redo everything so we can get an idea of where everything is now. Maybe I can talk her into another round of Amoxicillan. , thanks for your input! On Jan 5, 2006, at 11:53 AM, wrote: > Hi - > > I've had the same thing happen. Most likely, the lab > tech, when she had to code the lab test, simply found > the wrong code due to the similarity of the name, so > when she wrote that code out, the wrong one was > ordered. Perhaps you could get the code in advance > next time. If it hasn't been too long, sometimes the > lab holds the blood and it could be retested... Also, > perhaps you could ask Dr G's office for the lab's > code, although I think the codes may vary from > different agencies, unlike CPT & ICD9 codes... > > The Anti-DNase is similar to ASO titer, but acts > differently. It rises and falls at a different rate > than ASO antibodies, so sometimes you may find an > abnormality in one and not the other, depending on > when an infection was, how long it has been. You can > find a description of it doing a search on the web. > It has it's plus's and minuses. > > While getting PANDAS officially diagnosed may be a > goal, I haven't found that to be helpful. In getting > the ASO titers or the other, a large elevation could > potentially help get antibiotic treatment to bring it > down, as long as a doctor is willing to accept the > onset of OCD as a symptom. We can still experience > OCD without full-blown PANDAS ... perhaps the ASO is > most helpful in determining whether infection is still > present (or if the immune reaction is extraordinarily > strong) for the purpose of getting prophylactic > antibiotics to prevent illness or exacerbation in the > future, as well as diminish ongoing symptoms right > now. The basal ganglia antibodies would show if this > has 'crossed over' to a full-blown autoimmunity, at > which time you really really need prophylactics to > prevent any further insults to worsen the condition. > > > Did you also have an ASO done, and if so, what were > the levels? > > HTH- > > > --- base2 <base2@...> wrote: > >> I'm kind of frustrated. Here's an example of how >> important it is to double check on everything >> (not with Dr. G, but other doctors). >> >> Awhile back my son's neurologist requested >> some blood testing for PANDAS. I happened to >> talk with a friend about this and she pointed out >> to me that the testing was incorrect! My doctor >> requested a DNA(DS), Antibody test. Apparently >> this test has nothing to do with PANDAS, it's used >> to help determine Lupus! >> >> The correct one for PANDAS is the Anti-DNAse B >> test. Talk about maddening! Anyways, I just had to >> vent. >> I can't help wondering why she gave my son the wrong >> test. >> Ignorance? Forgetfulness? One thing I remember her >> saying >> after the results came back was " Ah, just as I >> expected... " >> >> Does anyone know how useful the Anti-DNAse B test is >> for PANDAS (or is this another test like the >> ASO-titer that >> only indicates a previous Strep infection, but >> doesn't >> help prove PANDAS). >> >> >> >> > > > > > __________________________________________ > DSL – Something to write home about. > Just $16.99/mo. or less. > dsl. > > > > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute and/or the Parent > Coalition. > > Quote Link to comment Share on other sites More sharing options...
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