jeremyssmith

For a new onset of symptoms (going on 5 weeks now), what is the consensus on the cunningham panel? Pediatrician is not opposed to ordering it- but as with anything is skeptical if it has any value this early on. Initial Strep ASO was only slightly eleveated, and response to Augmetin thus far (9days in) has had minimal effects. My thought is that we're only a few weeks in, and we have very little invested time/money/medications in treatment thus far- so if CP can confirm PANS/PANDAS, then we at least know which way to go with treatment. From what I've heard though- is the CP doesn't really confirm anything, because skeptical Drs are also skeptical about the CP.

@lordchallen thank you- please don’t read anything into the fact that I don’t currently share the anti-vax opinion. It’s my own ignorance on the topic that drives my opinion. I am always open to new thoughts, and especially in uncharted areas like this. I appreciate your candid response - as I actively consider all possibilities. My stance on vaccinations at this point is not important because that’s in the past- my focus now is on the future and how to deal with that- and your advice has been very helpful.

@maryangelaThank you for your insight.. I totally understand your interpretation of the anti-vax position with doctors. My (uneduated) view of it is that the potential *good* part of not vaxinating was tainted by the high profile case that was proven to be false. With everything there has to be some middle ground. Specifically, for my son- if the prenatal drug exposure opened the BBB.. then maybe that would be a case for CAREFUL vaccinations- because the "normal" biological response may not be strong enough in his case- which then brings into light many more questions... i.e. We are living in Japan- and so he also had to have Japan encephaltis vaccination prior to coming here.. The very little I have learned about PANS/PANDAS does talk about some relationships to encephalitis.. so then I wonder, could the vaccination have actually triggered something. My initial though was no, since he received the vax 4 years ago.. but from what I'm learning about triggering dormant bacteria.. it gives me pause. To your point about the regression.. did you ever find a solution? Did you see a Herxheimer-like exponential worsening of symptoms 1 day in as well? I'm concerned that since the Dr was very reluctant to give abx.. it will be very hard to get her to continue anything without a compelling reason. I have been video-taping and documenting all his symptoms as anecdotal evidence.. but I don't like playing dr. - I rather they play dr, and let me be objective.

@bws1565You bring an interesting perspective... not one I currently share- and don't really want to open up the passionate discussion of vacc/anti vacc on this forum, but I do think the points you present are worth evaluating. I *used* to be hard over on trusting the doctors to know what they are talking about, to now palcing more importance on educating yourself and being proactive in every decision- and vaccination is an important part of that discussion. Thank you for sharing.

@lordchallen- Thank you for the reply. Here's an update. We did get Augmentin prescribed and 36hrs later I felt like I was exorcising a demon. The tics, the coprolalia was so severe he couldn't even sit still. I gave him melatonin and let him sleep it off. The next day was much better, but not back to pre-symptomatic "normal". We're now 96hrs since starting the abx, and he's been about the same since the morning after the huge reaction. I've researched herxheimer reaction- and that's about the only thing I think explains the drastic worsening of symptoms- and there are many articles that talk about the symptoms getting much worse before they get better- so we're hanging on.. I'll update again after a few more days- and at the end of the 14day abx. My question to you @lordchallen and others in the know- specifically about the BBB. If you read about how METH effects the brain it is clear that METH crosses the BBB and that's what enables the high that the addict seeks.- So, if it's able to jump the BBB in an adult, what is it doing to the fetus BBB? I believe there is science to support that you can actually bridge the BBB in the fetus, making the child more susceptible to future infections. So- with my son.. IF the BBB was compromised en utero, AND he has an bacteria has made it to the brain, then wouldn't the abx ALSO cross the BBB and attack the bacteria. Could that be the extreme reaction we saw immediately after starting the abx? Was the abx attacking the bacteria IN the brain- causing mass confusion? You also mention that once the bacteria is in the brain you can't do anything about it- but what about long-term abx, and/or IVIg.. don't both of these ultimately attack the bacteria in the brain?

I have a 14yo (prepubescent) son who overnight developed severe tics and Coprolalia along with other symptoms aligned with PANDAS/PANS. He has been on ADHD meds for over 10 years for Sensory Processing disorder (SPD)- so the it's hard to say exactly when the symptoms truly started. He had a history of severe ear infections, when much younger and Rheumatic fever at age 6. His initial diagnosis following the rapid onset of tics was maybe Tourettes, so I started reading everything I could about Tourettes and kept coming back to PANDAS because my wife had strep-like symptoms the day prior to the most sever tics starting. After all the reading I did on this forum I took him to the Dr on friday (2 weeks after the onset of symptoms) for a strep culture and blood test. I'm assuming the strep culture came back negative (because I never got a phone call)- and I don't expect to get the Strip titer results back for another few days. [All this complicated by being military stationed in Japan.. and many labs have to get sent back to the US for analysis] I'm fairly sure the Dr has little knowledge of PANDAS/PANS because she provided me with the printout from NIMH (which is the third from the top if you goggle PANDAS disease)... which unfortunately clearly state "without a positive strep culture giving antibiotics is not recommended." If you read all the testimonials on this page, and watch the videos with Dr Swedo - you get quite a different story.. So, I'm wondering- why not just prescribe Augmentin right away.. what could it hurt? I know there are side effects to antibiotics, and if we encounter those we can switch to something else.. but I feel like we're waiting days for blood tests to come back- that still are going to be inconclusive- because she's not going to use antibiotics unless there is a positive culture because that's what the NIMH paperwork suggests. Does anyone know of any clear medical guidance that would direct the use of antibiotics?