Hrosenkrantz

Trinitity why haven't the neurologists been able to help,? That's too bad...

DCmom...what is the reason not to give oral steroids as a taper after a high dose infusion?

our infusion nurse recently mentione this to me. i haven't heard much about bacillin though in the years (!) we have been dealing with thill iillness. Why isn't this treatment discussed/used more?

fallingapart,what was the bad reaction to lamictal? I'm interested in this med for my son...

what new yorker article?

I believe the two main llmd options in dc area are the jesmek clinic, and also Debbie McCabe at NIHA, working w Dr. fuller

We were recently were told to do the Cunningham panel, and I checked with the company that administers it -- they say you should wait 6 weeks from IVIG, steroids or PEX to do the test.

Beerae22, did your daughter have any kind of negative reaction to Bactrim? Just curious... My son reacted terribly to it...

Ophelia, What is Dr. Najjar's recommendation on what you should do next?

Hi Beerae, I don't know what the answer is, but i think you bring up the question that so many of us struggle with, which how much of this can be addressed through "behavioral' interventions, and how much of this is behavior that is immune to these kinds of interventions? I mean, we don't want to let our kids behave in unacceptable ways, but will they/do they even respond to the kinds of response we would give to a non-sick kid who is exhibiting in appropriate behaviors?

Hi -- I came across this and thought it would be helpful to some Kind of on topic, kind of not... http://www.washingtonpost.com/news/parenting/wp/2014/12/08/tis-the-season-for-difficult-questions-holiday-party-tips-for-parents-of-a-challenge-child/?postshare=8501418078012342

smartyjones -- I have been following this thread but have hestitated to post because I'm not sure how applicable my experience is. My son had auditory processsing issues before I even heard of PANDAS and was diagnosed with a language diorder when he was four and a half (something called mixed expressive receptive langauge disorder). We tried adderrall when he a bit over 6 (he was later diagnosed with ADHD) and it made him talk, very manically. But he was also in throes of undiagnosed PANDAS at the time. I do not know if auditory processing issues are like to autoimmune responses to infections, but I do know my son's langauge and processing improved quite a bit after an initial round of antiobiotics following the PANDAS onset, and then REALLY improved with a 6 weak course of oral steroids. He has done a series of ivig/iv steroids this year. The infusions have helped his langauge in that we have seen improved expressive language. Sometimes his processing and responses though do seem rather slow, though.. We have done the listening programs over the years. We're always told our son responds well to it and enjoys it, but it hasn't struck me as a game-changer, certainly not one with long-term effects...

We were on rifampin earlier in our pans journey-- I forgot how long, it maybe was a two or three week course, along w clindamycin. Interestingly, the first week my son was on the rifampin, he did did beautifully, to the point that there appeared to be nothing ailing him at all. Week two he went down the tubes.

Awilliams, dcmom -- thanks for these detailed responses. Definitely very helpful and gives me a lot to think about,

I know this topic had been discussed before, so apologies for posting again... Is there any reason why PANDAS/PANS kids should not take ADD meds? I'm not referring to a general preference for supplements or ntural means at getting at ADD-related issues. I'm wondering if there is some kind of medical reasons why PANS kids should avoid the meds (the way some have bad reactions to anti-depressents, for instance)