Christianmom Posted January 6, 2011 Report Share Posted January 6, 2011 I have been going to Dr. T for 2 months now for my DS. Lots of blood work was done and DS was found to be healthy except for a high AS0 (240), DNase (316), and streptozyme (100). Was diagnosed with PANDAS and has been on augmentin xr, biaxin, and omnicef. He was given a 5-day prednisone burst with 2 days of 80% improvement. Recently DS was on a 30-day prednisone taper with no change. Dr. T ordered new blood work (guessing that the strep had become resistant to the antibiotic and was therefore active again). The results were: mycoplasma 105, ASO 170, DNase 340, streptozyme 200 with everything else negative. I have an appoint on Friday and he wants to talk about these results and about possibly getting a Cunningham test. I don't mind getting the Cunningham test, but won't the results be inaccurate since he has been on so much prednisone and antibiotics? Also, does anyone have any idea why the 30-day prednisone taper didn't work when the 5-day burst did? Even if the strep was still active, shouldn't DS have gotten relief with the 30-days prednisone taper? Thank you. Link to comment Share on other sites More sharing options...
Kayanne Posted January 6, 2011 Report Share Posted January 6, 2011 I have been going to Dr. T for 2 months now for my DS. Lots of blood work was done and DS was found to be healthy except for a high AS0 (240), DNase (316), and streptozyme (100). Was diagnosed with PANDAS and has been on augmentin xr, biaxin, and omnicef. He was given a 5-day prednisone burst with 2 days of 80% improvement. Recently DS was on a 30-day prednisone taper with no change. Dr. T ordered new blood work (guessing that the strep had become resistant to the antibiotic and was therefore active again). The results were: mycoplasma 105, ASO 170, DNase 340, streptozyme 200 with everything else negative. I have an appoint on Friday and he wants to talk about these results and about possibly getting a Cunningham test. I don't mind getting the Cunningham test, but won't the results be inaccurate since he has been on so much prednisone and antibiotics? Also, does anyone have any idea why the 30-day prednisone taper didn't work when the 5-day burst did? Even if the strep was still active, shouldn't DS have gotten relief with the 30-days prednisone taper? Thank you. Prednisone can effect the Cunningham test, but not antibiotics. You said he "has been" on augmentin, biaxin and omnicef...was he on the antibiotics at the same time as the prednisone taper? Is he on antibiotics now? I think that prednisone seems to be more effective as an early treatment. If your son has had this for a long time, you may not see the same results as others. Did Dr. T also test for Lyme? Link to comment Share on other sites More sharing options...
thereishope Posted January 6, 2011 Report Share Posted January 6, 2011 I believe there are others who have said their child's first steroid burst worked but a subsequent one didn't. Not sure whyy that would be the case. Did your child worsen while on steroids or just remained the same? As for the Cunningham test, from what ilast heard there is a hiatus on sending out kits and running tests. Does anyone have updated info on that? Is everyone else in the household healthy? Link to comment Share on other sites More sharing options...
momofgirls Posted January 6, 2011 Report Share Posted January 6, 2011 I have heard the steroids effect can be less effective over time too. Not sure exactly why but I believe it may have to do with underlying infections not being erradicated. It seems that maybe the prednisone can damper the immune response for a while but without really clearing the infections then the treatment does not hold. This has been the case in some of us families that saw temporary relief from IVIG later to find lyme, mycoplasma, bartonella etc... If there is still lingering strep and myco plasma I would consider really working on getting those titers down. Also has Dr. T checked for lyme? Its could be preventing your son from really clearing the other bacterias. Link to comment Share on other sites More sharing options...
Christianmom Posted January 6, 2011 Author Report Share Posted January 6, 2011 Yes, DS was on antibiotics (Biaxin and then Omnicef) during the prenisone 30-day taper. DS is still on the Omnicef. If prednisone would affect the Cunningham test, should I wait a while until getting it? No, DS did not get worse on prednisone. DS's overall picture is that antibiotics and prednisone have taken DS from unhealthy to healthy, from 104 lbs. to his normal 112 lbs. (5' 5"), from hardly talking to talking normally, from little movement to normal movement for the most part, from OCD so bad that he was hallucinating to just severe OCD. The problem is the OCD left behind--unwanted thoughts that plague DS constantly unless he is distracted. DS has all kinds of rituals he goes through to try to rid himself of these thoughts, but as I know everyone here knows, they only make things worse. If DS is distracted--playing a video game, talking with siblings--you would never know anything is wrong. But if you ask DS to do school work that requires concentration, DS will spend an hour and and half and get half a page of work done. During the 5-day prednisone burst DS had two days of relief from his unwanted thoughts. He said they didn't go away, but he was able to put them off and function normally. During the 30-day taper, he had no relief from his OCD, though he is able to manage his OCD better simply because he's learning to live in this odd way that he has been living. His abnormal life is beginning to seem normal to him as time passes. DS has been on heavy antibiotics since he was diagnosed with PANDAS. Dr. T is treating DS aggressively because of his age. DS has been checked for lyme twice and DS has passed both tests well. Thank you all for your time and concern. I would welcome any comments or suggestions. Link to comment Share on other sites More sharing options...
momofgirls Posted January 6, 2011 Report Share Posted January 6, 2011 Can I ask how did Dr T rule out lyme? I know he is not a fan of Igenex testing but in our experience it was very beneficial. Link to comment Share on other sites More sharing options...
sf_mom Posted January 7, 2011 Report Share Posted January 7, 2011 I would also ask if your son was checked for co-infections. Sometimes children are negative or IND for LD but still have Bartonella, Bebesia, Ehrlichiosis, etc. -Wendy Link to comment Share on other sites More sharing options...
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