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Everything posted by bobh

  1. I always thought herxes lasted for about a week. I suppose that if you lowered the dose of the herx-causing agent, you would reduce the severity at the expense of making it long - I don't have much experience with that. What we thought was herx, hit our son on about day 2 (of a new, effective abx),and lasted several days, slowly getting better after day 4 or 5. This is just one experience. The reason your question is important, is that you want to know that what you are experiencing is not an allergic reaction to something new you are taking, in which case it won't really go away with time. But allergic reactions wouldn't be a flares in OCD, I would think.
  2. We tried a pill form for our PANS son a couple of years back, but we did not seem to see an effect one way or the other. Try searching "low dose naltrexone" or LDN in the search dialogue box at top right. Be sure you are in this forum, and it says "in this forum" to the left as you start typing in that dialogue box.
  3. Yes, I think you are right - abx and ibuprofen (and for some, the first can be slow/trial and error, and for others, the 2nd doesn't even work). I have heard some stories of parents that were really frustrated when nothing was working, and in desperation, took their child off everything, and the child improved. We have had some negative reactions with supplements, so this is one desperate act to consider. Its a long-shot, especially if the child was put on each supplement one at a time, so you had time to see reactions. It also doesn't fit well with timing you mention, but on the other hand, if immune systems change (with time or seasons), then maybe a supplement that was ok some time ago is no longer so. I have heard of this, though I suspect it is also quite rare. Just another complication that makes it so hard to figure out what is going on.
  4. Sorry, I have been out of country and somewhat out of touch. I agree that the August start rules out school germs. If you can't find anything else in the environment that starts mid August, it could be that it happening two years in a row at roughly the same time is a co-incidence. For the odds of that kind of co-incidence, take the difference in start time between last year and this year, and divide that time into the year. So, for example, if that difference in start time was one month: one divided by 12 months in a year makes the second time it happened a 1 in 12 chance of being a co-incidence. I wouldn't ignore that, but that is technically below what most statisticians call statistically significant (which is typically 1 in 20). If it happens for a 3rd year also within one month of the other 2 years, well that will be (1/12) x (1/12) = 1 in 144 - much more unlikely to be a co-incidence. This is the classic problem all PANS parents face. We do tend to believe that there are specific reasons for a particular flare (rejecting the common response from some non-believing doctors "these things just wax and wane" - as if there is no cause and effect). We have repeatedly linked many of our child's flares to specific illnesses in the house (e.g. his symptoms went through the roof the day after his mom was unusually sick), so my wife and I truly believe there are triggers we can identify. After a few years (for us), things have morphed: more blurred, less obvious (though we still have some clear causes that we see). The immune system seems to change after time (including, for us, for the better with the recent start of our son's puberty). So, it seems theoretically possible for the normal external things we track (sicknesses, environmental triggers) to stay constant, and a flare to happen because of some (complex) change in the body/immune system. There is still cause and effect, but if puberty and the weather (per dasu's link above) can change the immune system, then our problem of identifying a trigger and some specific action to take against it is so profoundly difficult. We could double-up our effort to look for strep with our own swab kits (in all sorts of hidden places, not just the throat - I know a mom that swabs boogers), check sinuses carefully, get a tonsillectomy, check everywhere for mold, keep an eye on loose teeth - the list of established triggers is long. I have to go now - will continue another time, probably tomorrow.
  5. It is so common for PANS/PANDAS kids to have flares in the fall. Most parents (that I know) tend to blame the germs that circulate so much more via schools during the school year, then with most kid's summer lives. Unless your son is homeschooled, how do we separate that possibility from the ragweed one? Brainstorm other possibilities. That is, withholding your own (or other's) criticism about lack of mechanism, come up with other ways in which his summer life is different than fall, winter and spring. Then take a list of triggers (recall, some are environmental, such as mold) and starting linking or eliminating the various theories. It looks like you have only had 2 autumns of experience - not a lot to go on, but I will still be asking the same question that you have.
  6. Fingers pointing upwards as a diagnostic criteria for PANDAS is a new one on me. I wouldn't trust that. With the description of symptoms (or lack of symptoms) that you give, I tend to doubt that even those that are knowledgeable in PANS/PANDAS would give your son a PANDAS or PANS diagnosis. You haven't mentioned strep - that is a requirement for PANDAS - but without it you can still try on PANS. But PANS/PANDAS are (imho) tight boxes, and real life is so much bigger (in terms of complexity) than the boxes we make. So, to leave you still hanging a bit on diagnosis, try this on: 1) Wonder why "these types of tics usually go away by the age of 12?". Tourettes doesn't provide a framework to explain that, but a similar effect happens in PANDAS/PANS - about half have symptoms go away completely with puberty. With PANDAS/PANS, the framework is immune system dysfunction, which (who knows) can change at puberty? So, might disappearing tics be related to PANS/PANDAS? Hmmm. 2) One of the studies in the 2015 JCAP journal special edition on PANDAS (http://online.liebertpub.com/toc/cap/25/1) took kids with tics and/or OCD (no special diagnoses necessary) and measured certain known anti-neuronal antibodies (they probably don't know them all, but enough of them to find interesting results here). The result? (well, one of them, anyway): most of them have levels of anti-neuronal antibodies that folks without tics and OCD don't (see Figures 4 and 5 and Table 2). Anti-neuronal antibodies are a proposed PANDAS mechanism. Looks like that particular paper is one of only 3 in that journal (at the link I gave) that is free to download. Download it for yourself, not for anyone else - i.e. if you present it to your neurologist, my bet is that she won't have time or inclination. "Your son has has Tourettes, here is your SSRI."
  7. We haven't done the panel, but if you type Cunningham in the seach dialogue box (up near top right - make sure you are in this forum first), there are hundreds of hits of people here that have talked about it.
  8. The symptoms of uncomfortable clothes or bed has been a very common symptom for our child (who has PANS). I would tend to believe that your current sickness (that you described in another post) is bringing out the old symptoms that you had with PANDAS. There are cases of PANDAS/PANS continuing (typically less severe) after adolescence.
  9. Do you mean the recurring bouts of ear and throat problems, or the residual anxiety/psychotic symptoms? If you mean ear and throat, it may have nothing to do with PANDAS especially if you believe that is cleared up. But it could also be related in that PANDAS in an immune system problem, and if it didn't completely get resolved, the immune system may still be a little bit off. In any event, it might be important to clear those infections in case they cause additional neuro-psych symptoms for you (it doesn't have to be strep - other infections can cause them as PANS).
  10. I am so sorry to hear of all the struggles you are having. I can understand that your LLND (a naturopath?) will not want to continue without the positive IGenex tests. But if you had a PANS/PANDAS doctor recognizing those symptoms as PANS, they could decide to continue on that basis. Do you have access to a PANS literate medical health practitioner?
  11. Interesting. The statement in the paper that Lyme and PANDAS are "mutually exclusive disease states" is technically correct for the initiating cause only, but I don't think that a strict separation based on that alone is especially helpful for the long haul in dealing with the disorders. There is much more to be gained by understanding them as similar. There are splitters and there are lumpers. The authors of this article seem like splitters (they want to delineate between two diseases). I guess, on this one, I must be a lumper (i.e. I think it is useful to group these two diseases together), because I think the long-term autoimmune component of both disorders is much more important to emphasize, than the difference of the initial causing bacteria. What we struggle with is the later stages of the disease, the initial spark is only significant for prescribing the correct first set of antibiotics. There are many more prescriptions to follow! Support for lyme as an autoimmune disorder can be found here: https://www.ncbi.nlm.nih.gov/pubmed/15214872 . PANDAS is a subset of PANS, and PANS symptoms can be caused by many pathogens and irritants, B. burgdorferi included. I tend to believe that untreated PANDAS often morphs into PANS - and so it eventually becomes more similar to lyme than it is different. I don't know as much about lyme, but with symptoms so similar (per the table), some similar mechanisms are probably involved.
  12. I understand PANS as an autoimmune disorder that can be caused by lyme, and typically, once PANS has been present for some time, lots of other flare-producing triggers develop. For most of us struggling with PANS, it seems that there is no cure (except possibly puberty), and all we can do is manage it. That typically means chasing down the current trigger and trying to eliminate it, and then doing the same with the next trigger that comes along, and the next. Chasing triggers is art and science. How are his sinuses? Tonsils - even if only mildly odd looking, our ENT was shocked when he finally removed them and cut them open to see the mess inside (he didn't think they needed to come out, but obliged). Does he have any loose teeth right now? The nasties hanging around in mouth biofilm have good access to the bloodstream with loose teeth, or diseased (swollen) gum (our dentist confirmed that one after we had a bad flare after a teeth cleaning). There are many, many more questions and things that can be chased, some of them hard but possible to check at home (e.g. swab for perianal strep). It is a long road, with many forks (including some that I consider dubious science, and so avoid), but improvement is very possible.
  13. I can only say that I heard that Dr. Swedo is clearly pro-vaccine. At the Oct. 2016 PANS conference (I wasn't there, but had someone in a group I am in report from there), she stated her support for vaccines on the first day. This does not necessarily encompass the flu shot (not sure), but on day 2 of that conference, she explained further with something like (paraphrased): "yes, you will likely flare with the vaccine, but it's better to be able to 'plan' for the flare. Do the vaccine on a Friday for example, and have the flare. The flare you'd get from the actual illness would be worse than from the vaccine." From that, I am imagining she would say "get the flu shot, because its better than getting the flu". For what its worth, I personally am not taking that advice.
  14. So sorry for all the agony you are experiencing. Are you going to continue with, for example, rifampin? I don't know much about these two abx's (Bactrim and ceftin), but there is a comparison here: https://treato.com/Bactrim,Ceftin/?a=s Note that some of the comparison is anecdotal (i.e. just collected from user's posts about their experience, so it is a little softer than hard science). But you can see there that ceftin is primarily prescribed for lyme, while Bactrim doesn't get prescribed for lyme very much.
  15. Great that you found something that works! If all the changes you made were at the same time, it might be hard to tell which one(s) helped, but if its relatively easy to continue them all, then you've got a winning combination!
  16. Zith is a good first start for PANS in general, and I see (from googling) that it is used for lyme as well. So yes, it does make sense. There are some that argue zith needs to be in conjunction with other meds. The main thing is to make sure your doctor believes the positive results (and isn't just humoring you). Chronic lyme is so plagued by unbelieving doctors, it is quite a "political mess". I am afraid that flares continue, probably because the child's immune system isn't working right, and the next thing that comes along (strep, mycoplasma, whatever) will tend to throw him into a flare. Sorry for that bad news.
  17. searching_for_help: I did do some poking around about the rhogum shot. There is a lot of discussion, some heated (i.e. on both sides) about the role of these shots (and others) on autism, but research seems silent (as best as I can tell) specifically on rhogum and PANS or PANDAS. But we can do our own research in this group, with another survey!
  18. I feel that the genetic side of PANS is complicated, and research is in its infancy. By that I mean, there are lots of theories flying around, not all of which is necessarily well researched. I did 23AndMe for my PANS son, and I don't even recall his MTHR mutation - which is a little embarrassing. But I feel that I got contradictory advice about what to do based on his genetics. But this post gives an explanation for why there might be contradictory advice: https://latitudes.org/forums/topic/24865-methylation-advice-please/?tab=comments#comment-186296
  19. I am not a doctor, but would say its probable you have PANDAS/PANS. If it were me or my child, I would not bother with the cunningham panel, but would invest time/effort/$ in finding any infectious disease that you may have (such as strep, lyme, mycoplasma, etc.). Also have your tonsils and sinuses checked for infection. There is a whole host of other things that can be done, this is just what I would do first.
  20. There has been a change made by the admin (files were somehow locked, though not to me). Can you try again and see if they open for you? The attachments are not meant to be all read by everyone - just whatever interests you. The last one in particular is meant for those versed in statistics that want to know exactly what was done and the results.
  21. After a long history of homeschooling (not because of PANDAS/PANS, but continued when PANS hit), we tried school 2 years ago. It started getting more difficult after just a few weeks, and after a couple of months, we couldn't see how all the stress of getting out the door, being late every day, could add up to positive overall. It was much easier to keep him home. Khan Academy has a very good online program, and its free. We let him gravitate towards what he was interested in. We are trying school out of the house again this year (Grade 8) because he is doing much better than last year and the year before. If it gets as bad as before, we will simply yank him back to homeschool. Though it may seem daunting for a parent, if a parent is available, it is so much less stressful all around if the child's symptoms are severe.
  22. Hmmm - I can open them, but I will contact the admin and see whether they can help. I don't know much about mercury in shots, but I do believe the stabilizers in vaccines have changed over the years. The Rhogam shot is one of the interesting things to investigate - I haven't thoroughly combed the internet to see what studies have been done on it, but I will have a look. Bob
  23. After half a year of collecting responses, the "Short Poll for PANDAS/PANS Mothers" (listed at the very top of this forum) has been analyzed, and there are some interesting results! The purpose of the poll was to see if there was an association of PANDAS/PANS and the Rh negative factor. The number of Rh negatives is suspiciously high, but not to the "statistically significant" level that is typically set for this kind of analysis. It is expected that this association could be shown in a larger poll, because an association between Rh negative and autoimmunity has been well-demonstrated (see the 1st attachment for a reference). A surprise result is a statistically significant association with the A blood type among moms and PANS/PANDAS in their kids. The rate of A blood among respondents was 57% vs. 42% in the representative general population. As far as I can tell, any link between A blood and PANS/PANDAS is not previously reported or suggested on the internet. Thank-you for contributing towards this! There is (always) more that can be investigated, but we'll pick up more some time in the future. In the meantime, do read some more details, analysis and discussion about this poll in the attachments, and feel free to make suggestions for a future poll in this area. Some suggestions for additional questions are: - tallying blood types of the PANS kids - tallying blood types of both the biological parents - whether an rh- mom had the shot to prevent hemolytic anemia in an rh+ child - whether the mom had Anti-E antibodies (see MichellAnti-EMom's entry in the poll thread itself) - whether the mom had a cesarian section for her PANDAS/PANS child - how long the mom breast fed her PANDAS/PANS child WhyThisPoll.pdf AvoidingSurveyBias.pdf StatisticallySignificantResults.pdf CorrelationIsNotCausation.pdf DeeperStatsDetails.pdf
  24. Wow, that is a good question. The poll has just been closed now, and I can confess that the original purpose of the poll was to check if there were more than normal number of Rh negative moms. There were more Rh negative moms in the survey than in the general population, but the results were such that there was some sizable possibility (14%) that this might have been just a chance result. There is a much bigger, stronger survey that strongly links autoimmune diseases to Rh negative in the person with the disorder. But there was another surprise result - that and discussion of the results will be posted in the main PANDAS/PANS forum.
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