pastacey Posted April 28, 2010 Report Share Posted April 28, 2010 Hi All, I'm new. My son is a close match to PANDAS symptoms, including rages, Tourettes, frequent urination during exacerbation, OCD, obsessive behaviors, ADHD, S.I. problems (after having been relieved of them, they came back with a vengence). All of this came on really suddenly six years ago. The symptoms wax and wane, getting worse when son is exposed to virus or strep (or chemicals or sugars, etc). So here are my questions: Currently he has low titers. Does anyone know if Dr. Bouboulis works with low titer patients? Also, would PITANDS show titers? Thanks, Pat Link to comment Share on other sites More sharing options...
peglem Posted April 28, 2010 Report Share Posted April 28, 2010 I think the docs who really know PANDAS know the limitations of titers. I can't say specifically what Dr.B does, but ASO, antiDnase titers are not diagnostic for PANDAS. I'm guessing he knows that. Link to comment Share on other sites More sharing options...
pathfinder Posted April 28, 2010 Report Share Posted April 28, 2010 Your son sounds a lot like my son. How old is your son? Link to comment Share on other sites More sharing options...
jayjay Posted April 28, 2010 Report Share Posted April 28, 2010 Hi All, I'm new. My son is a close match to PANDAS symptoms, including rages, Tourettes, frequent urination during exacerbation, OCD, obsessive behaviors, ADHD, S.I. problems (after having been relieved of them, they came back with a vengence). All of this came on really suddenly six years ago. The symptoms wax and wane, getting worse when son is exposed to virus or strep (or chemicals or sugars, etc). So here are my questions: Currently he has low titers. Does anyone know if Dr. Bouboulis works with low titer patients? Also, would PITANDS show titers? Thanks, Pat I know for a fact Dr. B. works with low titer patients. (we were there yesterday) We talked a lot about titers. My son's were high, but are back to almost normal, but we are still in an exacerbation. He said he has worked with a lot of kids who have never had high titers. Link to comment Share on other sites More sharing options...
kimballot Posted April 28, 2010 Report Share Posted April 28, 2010 We are working Dr. B. My son has never had a positive throat culture or elevated ASO, but has had severe chronic sinusitis. Dr. B understands this and realizes that there are many ways that PANDAS can be triggered. So far he has been very good to work with. Link to comment Share on other sites More sharing options...
laurenjohnsonsmom Posted April 28, 2010 Report Share Posted April 28, 2010 31% percent of children do not get a rise in their titers. Welcome to our club! Lauren has never had a rise in her titers-EVER. I don't think any of the"well known" PANDAS doc's require a titer rise to confirm PANDAS/PITANDS diagnosis. I can say for certain that Dr. B doesn't! Good luck! Lynn Link to comment Share on other sites More sharing options...
Pandas_chicago Posted April 28, 2010 Report Share Posted April 28, 2010 31% percent of children do not get a rise in their titers. Welcome to our club! Lauren has never had a rise in her titers-EVER. I don't think any of the"well known" PANDAS doc's require a titer rise to confirm PANDAS/PITANDS diagnosis. I can say for certain that Dr. B doesn't! Good luck! Lynn Lynn could you elaborate on Dr. B clinical experience with PANDAS children...It is my understanding that Dr. Leckmann referred Dr. B's First Pandas case approximately 8 months ago? And that he followed the "well know" doctors protocols? - My Docotor who is Dr. K - who has been treating Pandas for over a decade does look closely at the patients Titers - its part of the clinical diagnosis, sometimes they rise and sometimes they don't - each childs ENTIRE clincial picture is taken into account, for example DNASE scores -- which are more important then the titers. Link to comment Share on other sites More sharing options...
laurenjohnsonsmom Posted April 28, 2010 Report Share Posted April 28, 2010 I do not feel it is my position to elaborate on Dr. B'a clinical experience but I can tell you your "understanding" is absolutley incorrect. If you read my post it says these doc's "don't require a titer rise to diagnose PANDAS". I would agree that titers are checked and taken into consideration on the clinical diagnosis BUT are not required. I know this to be true for both Dr. K and Dr. B as I have consulted with both in regards to all my children and PANDAS. I CAN tell you that Dr. B does what I believe to be most thorough diagnosis and really understands the immune componant that so familes struggle with but that is just my opinion. I don't think you could go wrong with Dr. K or Dr. B. They both have helped and continue to help many. 31% percent of children do not get a rise in their titers. Welcome to our club! Lauren has never had a rise in her titers-EVER. I don't think any of the"well known" PANDAS doc's require a titer rise to confirm PANDAS/PITANDS diagnosis. I can say for certain that Dr. B doesn't! Good luck! Lynn Lynn could you elaborate on Dr. B clinical experience with PANDAS children...It is my understanding that Dr. Leckmann referred Dr. B's First Pandas case approximately 8 months ago? And that he followed the "well know" doctors protocols? - My Docotor who is Dr. K - who has been treating Pandas for over a decade does look closely at the patients Titers - its part of the clinical diagnosis, sometimes they rise and sometimes they don't - each childs ENTIRE clincial picture is taken into account, for example DNASE scores -- which are more important then the titers. Link to comment Share on other sites More sharing options...
Sheila Posted April 28, 2010 Report Share Posted April 28, 2010 I'm going to close this thread because it is often not helpful to have parents speak publically on behalf of different doctors' clinical approaches, as they may change from patient to patient or over time. Further, parents are often not fully aware of the facts. Ideally the doctors would have their own websites that give details and explain their approaches. We've been doing great with keeping the tone positive and I've had lots of comments in appreciation of that. Let's all stay on that track! Thanks, Sheila Link to comment Share on other sites More sharing options...
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