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bobh last won the day on December 1

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About bobh

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  1. I am only familiar with the Anti Strepptolysin number (sometimes called ASO). It is not sky high, only a little high - indicating recent strep infection. You won't know whether the infection is ramping up, or cooling down unless you do another test (not too far apart from this one). Dr. T. will certainly know what to do (if anything) about the others.
  2. There are some cases of PANS patients reporting increased symptoms with vitamin D (possibly for the reason jan251 mentions, I am not sure). So you might want to research that, and then even so, start low and go slow. I think your skepticism is good, but you also have good counter points for giving it a try. By the way, I searched Coimbra in this group, and got only your post as a hit, so looks like no-one has reported on it here to date. I am curious - do feel that you got lyme (read that in another post of yours) at the beginning of your (undiagnosed) PANS, or do you think you picked that up later and it just made it all worse? I know you only tested for it 2 years ago, but do you (or your LLMD) think you've had it for a very long time? How is the lyme battle going, are you winning?
  3. That is interesting. I believe that most PANS/PANDAS doctors will believe that the disorder has an autoimmune component, but it all got kicked off by an underlying infection, and is re-kicked and re-started by subsequent infections. But there is at least one doctor (Dr. K. in Chicago) that has said that in the tough cases, abx fails in the end. So, if this doctor is willing to help, and believes only steroids or IVIG will do the trick, why not go for the IVIG (if you are covered/can afford it)? It might be a semi-permanent cure (longer term than the steroids). Those PANS/PANDAS patients that have done IVIG sometimes have it all spoiled by a subsequent infection, so while you have the IVIG getting lined up, can you still chase the idea of getting a prophylactic abx with another doctor?
  4. Thanks for posting progress. So sorry that no-one replied to your original post. Certainly steroids help some, and not others. You can type steroids in the search box near the top right to read about other folk's experiences. Make sure that you are in this group before you type into the search box. Our child is similar to yours, in that we had an initial flare at age 6 that went away on its own after several months. But then the next one was really severe. Ours never responded to ibuprofen or steroids, however. At least your neuro recognized the brain inflammation. They often don't take the time to dig deeper. If you find that your neuro dismisses PANS or PANDAS, he might be amenable to some convincing if he knows some of the big names that have blazed the path (i.e. Dr. James Leckman). I typically don't recommend trying to convince a doctor this (much simpler to just get another one), but he might be different on account of his openness with recognizing the brain inflammation. If you want some more info on Dr. Leckman, let me know. He is a giant in the field, and was initially on the other side (opposing PANDAS as a real entity), and then he switched sides.
  5. Is this PANDAS??

    Following on what Eliself syas, the list of symptoms for PANS and PANDAS can be found here: http://www.pandasnetwork.org/understanding-pandaspans/symptoms/ and in other places on that same site.
  6. Recovery Time

    Experiences vary, but my feeling is that unless you catch it right away in treatment (i.e. within days of onset), the best you can do (until possibly puberty) is reduce symptoms. I hate to say that people don't typically get back to 100%, but some do talk about getting to 90% with treatment. Then also, the kids can regress again in a flare, and then get better again. It also seems that as the disorder ages in the child, it can morph (become different in symptoms).
  7. Muscle Twitches?

    Sounds (from this distance) like tics. My son had plenty of weird (choreiform) movements, but no real tics (in my opinion). Can you find a PANDAS/PANS expert in your area? There is a list here: http://www.pandasnetwork.org/research-resources/us-providers/ Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.
  8. So sorry about your situation. I have no connections in that area, but you might also try to see if any of the practioners in North Carolina have sites or facebook groups where patients connect. Here is a list of some providers: http://www.pandasnetwork.org/research-resources/us-providers/#NORTH CAROLINA
  9. We also got slightly worse on probiotics (well tested, on and off many times), and suspected worse on NAC (just from one try). You might try cutting some of the supplements out one by one and see any of them are a problem. Interactions can also get really complicated when there are so many pills.
  10. I believe it is. The false negative rates for swabs (i.e. test says negative, but you are actually positive in the throat) could be as high as around 30%, especially if the swabber is not a pro. The false positive rate (test says its positive, but he really doesn't have it) is much much lower (around 5% or so - depends on method, and user), so one positive in the presence of a couple of negatives means the positive should rule. I don't know what the false test rates are for the culture, but undoubtedly the false negatives are higher than the false positives, because many different mistakes can lead to a negative, whereas most everything has to be right for the positive. You can buy a strep kit, and swab whenever you are most suspicious. There are other places to swab (perianal strep is common), so could be negative for that reason (that is outside the false positive rate above).
  11. Unfortunately, there is no clear definitive biomarker for PANDAS, so blood results are just a guideline. Our son was also always a bit more anxious that our other kids, but we got a PANS diagnosis primarily because of an extreme ramp up of OCD symptoms after some (unknown) flu-like sickness when he was 9. He actually had a bout of severe OCD at 6, that mostly went away months later. We wish we had been tuned into PANDAS/PANS back then (because if caught early, it should be better), but we didn't learn until he was 9. So, you are in better shape than we are. If unsure, Dr. T. might weigh the risk of giving him longer-than-normal trial of abx vs. having PANDAS untreated. Catching this early is a good thing. Having gone through all that we have, I would be more anxious about untreated PANDAS than about wasting the time and money you have spent on a possible dead end.
  12. Things are changing. A few years ago, in pretty much most countries, PANDAS would have been either not known (or, as in our case) it's existence outright denied. If you don't get a positive strep test and someone insists that therefore it can't be PANDAS, there is also PANS - virtually the same thing, but caused by other infection (or environmental trigger). There is still reluctance to accept the illness. Where I am, a doctor at a renowned children's hospital has said "I won't believe it is PANDAS unless there are two documented strep cases on file". But this is not the official definition (see the pandasppn or pandasnetwork sites) - a provisional diagnosis of strep can be given even if the child was known to be exposed to strep (at family or school).
  13. Some would call that low, but it's not necessarily low enough for PANDAS patients. Dr. Tanya Murphy found that more than 1/3 of 38 pandas patients reacted badly to that kind of dose, and only improved when starting at about 1/10th that dose. Here is her paper: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype We followed that advice and convinced our prescribing pediatrican to start at 2.5mg zoloft, and we had a dramatic improvement right away at that level (the pediatrician actually didn't believe it, because it was a sub-therapeutic dose, but the Dr. Murphy reports the same - improvement for some at really low levels, and sometimes really bad reactions at "normal low" levels)
  14. Yes, long post, but good - thanks. It is so encouraging to hear that your daughter is "worried about hair and makeup". I didn't think that I for one would ever say that, but after the catatonia, that is truly so good to hear. How did you get to the point of getting tociluzimab? I presume it was an immunologist that prescribed it. Your posts are the only ones that mention this drug on this forum (according to the search function, if it is working correctly), so this one is not well known, and maybe should be. Our son had catatonia-ish symptoms not long after his onset - usually once or twice a day, lasting from 10 minutes to just under an hour. We took videos, and a neurologist (that outright rejected PANDAS as not a real thing) pronounced them to be "psychogenic seizures". Wikipedia also defines catatonia as "a state of psychogenic motor immobility and behavioral abnormality manifested by stupor." I wonder if we should use a different word, because psychogenic (i.e. "of psychological origin") is definitely the wrong idea here.
  15. I have finally gotten around to reading the 2nd link above. It seems to be a very exciting development for lyme treatment, but then it says "Direct extrapolation of these in vitro findings to human treatment would be unwise and premature." Has anyone had experience doing the 3 abx in combination anyway?