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bobh

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Everything posted by bobh

  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?
  16. Was the IVIG done for PANDAS/PANS? Who was the ordering doctor, if you don't mind me asking.
  17. We all want a definitive biomarker for PANDAS/PANS, but it is not to be had. The Cunningham Panel was never touted as a true biomarker, only as indicative - but even that is now in significant question (see below). Given that, a better choice for your money would be to book one of the top PANDAS/PANS experts that have had extensive case loads. Those experienced experts will know that strep blood work coming back low (when symptoms have been present for a very long time) does not necessarily mean no to PANS or PANDAS.
  18. There is a not-so-low false negative rate with swabs and cultures. If you do, say, 3 swabs in a row (on the same patient at about the same time) and 2 are negative and one positive, you should call it a positive, because the false negative rate is much higher than the false positive rate. (From this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095077/ one can calculate the false negative rate as 28.1%, and the false positive rate as 5.7% - but that is just for that particular kit and the way it was used - results for other kits and techniques can vary).
  19. Group B trigger?

    Yes, I have heard so - would take a bit to find out where I heard/read it. All I can find right now is a comment " In some of the US groups there have been discussion about other kinds of strep." (other than A).
  20. Considering PANDAS/PANS

    Ok. I would still suggest that if he is not well experienced in PANS/PANDAS, he may not get it right, even though he is otherwise very experienced, smart, etc. It is a strange and complex thing, and the experienced practitioners know that these particular boxes have been defined initially for research purposes, and then shaped by some strange politics, so that just because a person doesn't perfectly fit the box that has been defined, that doesn't have to mean "no" - the box could be a bit off. I was also surprised about that Cunningham panel - but I haven't read the Swedish study, or any rebuttals or criticisms of that study, if they exist yet. I certainly would if I was shelling out the money. This is another example of the importance of a "buyer beware" attitude - that it is best to educate yourself, if you have the capacity to get into it. My goodness, this is too much for a 17-year old, especially given that you are also struggling with symptoms. But you have come here, so you are already on the path. There is a lot of stuff on the www that you can read, but to give what you might stumble across about PANS/PANDAS some context, the documentary "My Kid Is Not Crazy" might be helpful (that will start to explain the "strange politics").
  21. Considering PANDAS/PANS

    The attached is a post about the Cunningham Panel that came from another group. I always knew that it was not definitive, but this was a bit of a surprise. It may not be worth spending the money on it.
  22. I would like to suggest that one "treatment option" is to not add too many things or make too many changes at once. These kids can react so individually and differently, and a "throw everything but the kitchen sink" strategy can result in a confounding "who know what is causing what" situation. For example, in some (rare?) cases, vitamin D makes some kids worse. That is even when they might be low on vitamin D in their blood - go figure (and some have went and figured, and have explanations for this kind of paradoxical thing). Somewhat less rare (in my humble opinion) but still rare, are kids that get worse on probiotics. Our son was measurably worse (I keep track of daily soap use as a measure of his OCD) on many different probiotics. Some kids react strongly to some probiotics, some parents mistake that (in my opinion) for herx, and some (such as my son) get mildly worse on probiotics. And of course, many have no problem with probiotics. But if you don't introduce them separately (i.e. have them on it for a week before abx), you won't know what is doing what. You can also try to figure that out by removing things later. There is more than one story of a mom that in desperation (when her child was not improving) took the child off everything - and the kid got better. But again, you won't know what was the culprit unless you remove one at a time, wait and watch, add back in, wait and watch, remove again, wait and watch, remove another, wait and watch, etc. It is a long road, and also a less-travelled path (because we can't be patient enough - we want a quick fix).
  23. Dr B or Dr T?

    Tough to call. You can search both here in this group and see comments that people have made before. I would think that Dr. T is more experienced with PANDAS, as he has had a very long history of cases.
  24. I haven't worked with him, though I did hear him on Radio PANDAS some time back (you can find and listen if you like). You can also find a few comments (people here have asked about him before) at the following links: https://latitudes.org/forums/topic/21034-dr-horowitz-vs-dr-bock/ https://latitudes.org/forums/topic/20952-anyone-seeing-dr-kenneth-bock-in-ny/ https://latitudes.org/forums/topic/24938-dr-kenneth-bock/
  25. Considering PANDAS/PANS

    I would recommend further detailed dissection of the "things are pointing towards a no for PANDAS/PANS". We have found some in the health care field "play along" with some tests and such, full well planning to say no regardless of results. Does your psychiatrist have a current PANS/PANDAS caseload of some size, i.e. an expert? I am coming from a place where I feel I have to "take over" and sift the evidence for myself, and make my own decision (to get a second, third or further doctor's opinion).
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