bws Posted May 19, 2011 Report Posted May 19, 2011 So I discussed my daughter's dx of Pandas with my regular pediatrician. He sympathized and told me he would never treat this because this is not in any literature, not studied and he would not want a kid to get liver damage, etc. He specifically mentioned he would not want to get sued!!! So he refused to treat my daughter only to protect his own backside!! Thank god for Dr. Schulman, who is treating me daughter. I wanted to know if the DNAse B only is strep antibodies or other autoimmune diseases too? Is it possible to have elevated DNAse B and NOT have Pandas???? THANKS
peglem Posted May 19, 2011 Report Posted May 19, 2011 So I discussed my daughter's dx of Pandas with my regular pediatrician. He sympathized and told me he would never treat this because this is not in any literature, not studied and he would not want a kid to get liver damage, etc. He specifically mentioned he would not want to get sued!!! So he refused to treat my daughter only to protect his own backside!! Thank god for Dr. Schulman, who is treating me daughter. I wanted to know if the DNAse B only is strep antibodies or other autoimmune diseases too? Is it possible to have elevated DNAse B and NOT have Pandas???? THANKS AntiDnaseB is an antibody that is specific to a toxin excreted by GABHS. It is NOT the antibody that causes PANDAS and is used as an indicator that somebody has had a strep infection. It is not diagnostic for PANDAS at all...the normal immune system makes this antibody when exposed to this toxin from type A strep. So, yes, its possible and probably very common to have elevated antiDnaseB, but not have PANDAS. Its also possible to have PANDAS w/o elevated antiDnase or elevated ASO.
bws Posted May 19, 2011 Author Report Posted May 19, 2011 So, is there a blood test that would reliably indicate Pandas? We are treating my daughter with abx anyway, just wondering, for someone else that I am trying to convince, that their child's troubles are all Pandas.
JAG10 Posted May 19, 2011 Report Posted May 19, 2011 I think anti-DNAse B can be elevated by different strep and ASO is group A only. DNAse B is not a "pandas test", but having taken my girls to 4 different pandas experts, they all found it significant her DNAse B titers were over the tilt measure or the maximum limit the lab tests. I think I remember some families using the Mayo Clinic lab who obtained crazy measurements into the 5000's, maybe IowaDawn and Worried Dad?? So while elevated in the hundreds happens in the typical population, I think I remember elevation in the thousands only occurs in less than 1%. Of course, lack of elevation does not exclude pandas. Dr T use to frequent this board and he explained it like some kids have a hyper-immune response cranking out all types of antibodies with no way to shut down and other pandas kids have a hypo response not mounting much defense at all. Some kids have crazy high titers and immune deficiencies. I suppose if this disease was logical or made any sense at all, they'd have it figured out already w/o controversy, but what fun would that be????
peglem Posted May 19, 2011 Report Posted May 19, 2011 So, is there a blood test that would reliably indicate Pandas? We are treating my daughter with abx anyway, just wondering, for someone else that I am trying to convince, that their child's troubles are all Pandas. There is a researcher, Dr. Madeleine Cunningham, who is attempting to develop a test. She checks serum for 4 strep related anti-neuronal antibodies, and to see if it triggers high CamK II activity in brain tissue. I don't have the link to her study- hopefully somebody who does will chime in here. Her research is not complete and the test is not FDA approved, but she does have some interesting preliminary data. You need to pay out of pocket for the test as insurance will not pay for participation in a study. Other than that, there is not a blood test, or any other test that I know of.
peglem Posted May 19, 2011 Report Posted May 19, 2011 So, is there a blood test that would reliably indicate Pandas? We are treating my daughter with abx anyway, just wondering, for someone else that I am trying to convince, that their child's troubles are all Pandas. There is a researcher, Dr. Madeleine Cunningham, who is attempting to develop a test. She checks serum for 4 strep related anti-neuronal antibodies, and to see if it triggers high CamK II activity in brain tissue. I don't have the link to her study- hopefully somebody who does will chime in here. Her research is not complete and the test is not FDA approved, but she does have some interesting preliminary data. You need to pay out of pocket for the test as insurance will not pay for participation in a study. Other than that, there is not a blood test, or any other test that I know of. Apparently that study is no longer accepting new participants: http://www.latitudes.org/forums/index.php?showtopic=13665
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