Jump to content
ACN Latitudes Forums

bobh

Members
  • Content Count

    305
  • Joined

  • Last visited

  • Days Won

    17

bobh last won the day on September 12

bobh had the most liked content!

1 Follower

About bobh

  • Rank
    Advanced Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. bobh

    Advil

    mlee, there is a rumor among MD's that some abx's might be anti-inflammatory as well as fight infection. That helps them explain why they work so well sometimes. But I don't think that this aspect of some abx's has been well understood - I see it as speculative (not to say it isn't true).
  2. We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  3. Once in this forum, type "California" in the search bar (near top right), and you'll get at least one thread asking the same question.
  4. bobh

    Advil

    We had great difficulty with some blood draws. That advil experience is a clue towards an inflammatory issue. It's not good to give Advil over the long haul, which is why it is known as a "resuce med" - used in the short term for the worst "flares" (does your child get worse at times, or pretty steady in symptoms?). On abx - many have struggled getting it - all I can suggest is to try other PANS/PANDAS-aware doctors.
  5. bobh

    will Normal return?

    We have not had this experience with our PANS child, so can't really give advice from that point of view. Just a wild thought - have you considered lowering doses, rather than upping? I know that Zoloft dose you mention (8mg) is very low, but we were actually lower, and the first time we used it (at 2.5mg, in suspension), it had dramatic effect. If he is sensitive as you say, going in the lower direction might have a positive effect? Whatever the change, slow and one at a time is what I would want to try.
  6. I would tend to believe not co-incidence. Nystatin is another anti-yeast drug. I find it easier, safer and much easier to just try it (it doesn't absorb into the bloodstream appreciably, that is why it is safe) than to draw blood (which in our case, was a significant hardship) to have a test done.
  7. bobh

    medication issues

    I don't know Mepron, but it is my own thought (only) that the anti-yeast drugs (nystatin and diflucan) might be a bit better taken some time after any abx. My thinking there is that when the abx clears out gut bacteria, that is when yeast has an opportunity to jump into the cleared out spots. So taking the anti-yeast some relatively short time after the abx should be better than taking it some relatively time before. But it is probably not a big difference from taking all at once. I don't have any thoughts on am vs. pm for any of these (and, I don't know Mepron).
  8. Our child had severe symptoms for about 4-1/2 years (not including a 1-1/2 year period of time where he was almost normal), and he has been about 90% for the last year. It would be key to root out any chronic infection, as might exist for example in tonsils. That could be a lot of things - at one point (for our child), it was a mild case of gingevitus that really ramped up his symptoms. I didn't believe that the Cunningham panel was worth the $, but I never had a health care provider or system (I am in Canada) that cared to look at it.
  9. At http://www.pandasnetwork.org/research-resources/us-providers/ , there is a naturopath listed in Seattle. I myself can't make any recommendation, except that I myself would want a health care practitioner that can prescribe antibiotics and nystatin.
  10. We had seizure-like symptoms with our PANS child, but they weren't the kind associated with epilepsy (because he was aware, could look right at us, just couldn't respond). Some also have what they call "absence seizures".
  11. Read about it, never did it - would love to see your assessment later.
  12. 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.
  13. 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.
  14. 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.
  15. 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
×