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bobh

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bobh last won the day on May 24

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  1. Read about it, never did it - would love to see your assessment later.
  2. bobh

    Dr Chugani / IVIG / Other docs?

    Yes, I will second the "a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work." statement. In our case, our son was also lax on brushing, and the dental hygienist said he had mild gingevitis. That explains why he was slowly getting worse over a couple of months (dentist confirmed that bacteria in the mouth can enter the blood stream directly through gingivitis-diseased tissue). But then when he had the cleaning done - pow, an explosion of OCD. We solved it, albeit over weeks, with regular mouthwashing, and more regular brushing.
  3. Yes, one can have PANS without any indication of positive strep. PANDAS by definition includes strep, but it can be difficult to find. Of the symptoms you mention, the leg pain seems odd. I wonder if that might be a separate issue that deserves it's own check. I have heard of several folks that have had PANS symptoms develop after a flu shot. I take it from your notes that it was within about 2 weeks of the shot - that is still short enough (in my mind) to link the two, assuming that he never had the head twitch, handwriting and behavior symptoms in the previous year or more. But for your own sanity's sake, I would recommend against trumpeting the flu shot as the cause to doctors that you see. Write it down (as you have here), tell one doctor that you trust the most, but most doctors will tend to dismiss you more readily. In that vein, it is better to suggest PANS rather than PANDAS, not just because you haven't linked strep, but mostly because PANS is less controversial. Even better, is to ask about ruling out encephalitis.
  4. bobh

    IVIG at 25

    I myself don't consider the Cunningham panel good bang for the buck. It doesn't treat, or (as far as I know) give a better picture for how to treat. Did Dr. K recommend it? He has already conceded the signal from tonsillectomy improvement, so I doubt he will pronounce you non-PANS. We decided not to spend that money in the case of our son.
  5. bobh

    IVIG at 25

    Yes, thank God for Grandma. I am several hours and across the Canadian border from Chicago - wish I was closer so as to help you. Please do keep us posted, and keep your spirits up as you can. Bob
  6. bobh

    Lawyer for IVIG denial

    Sorry, no experience with that issue and lawyers. However, I did see (on a lyme board), and trick about getting it reversed. I believe that this describes the trick, and how it doesn't necessarily work as advertised: https://www.snopes.com/fact-check/hipaa-medical-hack-insurance-claim-denials/ If you hunt around you might find other similar advice - there used to be various web pages devoted to it years ago.
  7. So sorry for your struggles. In my experience, OCD has a thousand faces. The most common mistake, is that what I feel is OCD is called a "complex tic". If your daughter doesn't have any tics, then this isn't a consideration for you. Let me know, and if she does we can converse more about that. Many children hide their OCD because they are embarrassed about "appearing crazy", and some do a really good job of hiding even from their parents. One of our son's obsessions was telling us everything, and that included all the other OCD habits, so we didn't have this hidden issue at all. OCD (to me) includes things like skin picking, or hair pulling - does she exhibit either of those? Another one is religious scrupulosity. Here is a site with some discussion of a couple uncommon or hard to notice displays of OCD: https://psychcentral.com/lib/symptoms-of-ocd/ . Finally, the definitions of PANS (and PANDAS) have been influenced by a strict need for a tight definition for research purposes. And then, with the PANDAS controversy, certain common symptoms (such as tics) were actually excluded from the definition for political reasons, namely, in a consensus conference (where there was an attempt to placate doubters), and to avoid further backlash from the PANDAS naysayers. It is also affected by the debate between "splitting and lumping" (those that want narrower more specific definitions, vs. those that want more open, wider encompassing definitions). So, the PANS box is far from perfect, and if in the end your daughter does not quite fit it, that doesn't mean you won't benefit from some of the PANS treatments, as for example, some Tourette's suffers have.
  8. Doctors can sometimes get intensely interested in figuring stuff out - but usually only when it is their own kid. So, you are her only true hope - and she is lucky to have you. I don't know anything about the other streps (I see from Wikipedia that there are B, C, D, F, G and H).
  9. bobh

    IVIG at 25

    Congrats on taking the tonsillectomy step - imagine that stuff still there, constantly provoking. I may be wrong, but I doubt you will find anyone here that has treated at that age. But it is still usefull to type IVIG into the search box (near top right) once you are in this forum, and read some of the stories. There is one of an 18-year old, that ran into trouble I think also because of underlying infections.
  10. Here is another link about a Group B strep experience - I haven't watched it all ... https://www.facebook.com/navigatingmotherhoodnaturally/videos/1934456019948074/
  11. So are you talking about Group B strep? Strep B is excluded from the PANDAS definition, and it usually doesn't cause symptoms in adults. But pregnant women are screened and treated for it, because according to Wikipedia, "Group B streptococcal infection can cause serious illness and sometimes death, especially in newborns, the elderly, and people with compromised immune systems." (https://en.wikipedia.org/wiki/Group_B_streptococcal_infection) Your pediatrician will naturally be dismissive if he/she doesn't believe there is a compromised immune system involved. I don't know if it is a problem worth getting a tonsillectomy for.
  12. bobh

    Flare

    Sorry I didn't reply earlier - have not checked into this forum since I wrote July 6th. I think the one that we used was Quidel Quikvue (we actually lent it to someone and don't have it right now). It is used by some MD's, but then became harder to get some time back. It is often hard to figure out what is making him flare. We had one slowly getting worse over months, and then we did a teeth cleaning that dramatically increased the flare. That's when we found out he had mild gingevitus (hard to get him to brush when he is in a bad state), and (our dentist confirms), bacteria can enter the bloodstream directly through the diseased gum tissue. It also took a while to clear it, but we did. But suppose we never did a teeth cleaning - it may have been a while before we latched onto that problem.
  13. bobh

    Seasonal swing in PANS flares

    A December/January start seems unusual. It is neither high flu season, nor allergy season. Being the time of year that windows are closed, I would wonder if there is something in the house, that doesn't get diluted until windows are generally open again in June. Mold is just one possibility, another is pet allergies, if you have pets.
  14. Hello newfie (are you living on The Rock, or settled elsewhere?): Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements. One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience). I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance. One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol). Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day. I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm . We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone). With supplements, I would be very careful - some make some kids worse. Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids. So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.
  15. I would guess that we don't know enough about how everything works to pinpoint the difference between the two options that you suggested. The way the immune system works alone is particularly complicated, and that's just what they understand. From a practical point of view, what would you do differently if you knew the true answer to your question? The child shouldn't stay on (a significant dose of) steroids over a long haul, so this is a rescue option. Or, is this trial about proof of autoimmunity?
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