Pandasphilly Posted November 1, 2012 Report Share Posted November 1, 2012 I'm confused. It seems to me pandas is relatively the same as sydenhams chorea (SC) but with slightly different movements (jerky vs. slow/twisted). Sydenhams choreas has been around since 1600s. So why is pandas so disputed? Dr T, dr L and I were watching my son and videos and decided whats left of his movements are more choreiform in nature since the jerk like tics reduced with antibiotics. Therefor he is diagnosed with both pandas & SC. This is helpful because the school takes SC very seriously. No push back. Also treatment protocol is exactly the same. Any thoughts ??? Link to comment Share on other sites More sharing options...
EmilyK Posted November 2, 2012 Report Share Posted November 2, 2012 I'm confused. It seems to me pandas is relatively the same as sydenhams chorea (SC) but with slightly different movements (jerky vs. slow/twisted). Sydenhams choreas has been around since 1600s. So why is pandas so disputed? Dr T, dr L and I were watching my son and videos and decided whats left of his movements are more choreiform in nature since the jerk like tics reduced with antibiotics. Therefor he is diagnosed with both pandas & SC. This is helpful because the school takes SC very seriously. No push back. Also treatment protocol is exactly the same. Any thoughts ??? From what I've read they are closely related but not the same, and it was the understanding of SC that helped docs recognize the PANDAS. Push back, in my opinion, comes from the lucrative business of psych drugs vs antibiotics. Link to comment Share on other sites More sharing options...
MMC Posted November 2, 2012 Report Share Posted November 2, 2012 I was diagnosed with SC as a child. Both of my kids have PANDAS. DS also triggers with any cold or flu virus, so falls into the PITAND (or PANS as it is now named) category. I believe if I was a child with my same symptoms today and saw a PANDAS specialist, I would be diagnosed with PANDAS instead of SC. Tics can appear to be chorea like, or the child can in fact have both. SC and PANDAS are close cousins for sure. Strep was the trigger for myself and my two kids. I have often commented if Docs learn about SC in med school, since the diagnosis has been around so long, why do they have such a hard time with PANDAS? For sure, the reluctance is due to the fact psych treatments revolve around their old treatements of SSRI's and such instead of antibiotics and immunology. So, the result is all these smart medical professionals stuck in their old protocols refusing to accept the new research and truth...very frustrating to say the least, and our kids suffer even more with delayed treatment, while the parents search for PANDAS drs, driving and flying miles and miles. I guess it's going to take a new generation of doctors for 100% acceptance of PANDAS/PITAND/PANS. I have been encouraged when we take DS to an appointment and there is an intern present who hears the lead doc talk about PANDAS. For example, Dr Latimer referred us to a Georgetown ENT, Dr Harley...he believes in PANDAS and had an intern assist with the initial examination. Link to comment Share on other sites More sharing options...
kos_mom Posted November 2, 2012 Report Share Posted November 2, 2012 The first page of this Swedo paper talks about Pandas in relation to SC: http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf Perhaps over time we'll talk about post strep syndrome more generally and then discuss the various subclasses: Pandas/Pans, SC, RF, and possibly mixed presentation. I have read up a bit about MS, for example, and there four different subtypes are distinguished. My DD, 19, has been in Georgetown for a week following aseptic meningitis from IVIG and subsequent discovery of a blood infection. We have had a parade of specialists in from different areas and they have all been accepting of the Pandas dx, especially the neurologists. Notably, they have been from adult neurology and they ordered her back on clindamycin (without any prompting from us), which the attending doctor had not ordered for her. Dr. L has done a lot of work with pediatric neurology here but not with adult neurology, so their acceptance has come as a pleasant surprise. Link to comment Share on other sites More sharing options...
oivay Posted November 5, 2012 Report Share Posted November 5, 2012 My daughter was diagnosed with both Pandas and Sydenham's. (We used Dr. T, although she saw a few others too.) She had a fairly long history of documented strep infections (at least 2 years). Cunningham test showed Pandas, not Sydenham's, but almost all of her symptoms were chorea. I think the more educated doctors realize that at minimum there is so overlap between the two. She has been fine since Pex, almost two years ago, but still gets pretty severe headaches from time, which seems to be common for SC kids. Link to comment Share on other sites More sharing options...
Pandasphilly Posted November 5, 2012 Author Report Share Posted November 5, 2012 Oivay Did you mean to say "some overlap"? Link to comment Share on other sites More sharing options...
oivay Posted November 5, 2012 Report Share Posted November 5, 2012 Oivay Did you mean to say "some overlap"? yes....oops! Link to comment Share on other sites More sharing options...
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