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)

I haven't read this yet, passing along. I'm sure many have seen this already http://www.liebertpub.com/global/pressrelease/expert-recommendations-for-diagnosing-pediatric-acute-onset-neuropsychiatric-syndrome-pans/1546/

pr40 -- you are saying you think it is nonsense that valtrex is a mood stabalizer, and what is actually going on is the antiviral is getting at the underlying infection, and that's why it is helping?

smartyjones, My son has a IEP under the OHI code. I hav provided a very basic letter from the diagnosising doctor saying this is what my kid is diagnosed with, and this what they are being treated with. I have provided two letters, one for a PANDAS diagnosis and one for a subequent dagnosis for an autoimmune seizure disorder. I'd be happy to PM you copies of the letters. At a recent eligibility meeting, the IEP team, which included the district representative, had to answer a small checklist about what consitutes OHI, and whether these qualities apply to our child. Like momslove above, I'm not following what the CDC lyme thing has to do with anything. is the PANDAS dx not enough for an IEP? If Lyme is impacting your child, can you get a short letter from doctor saying "i have diagnosed this child with Lyme am treating him?"

I'm reading this article now, but one of the things I like about it is the run-through the parents go through with trying to attack this with behavioral interventions (ie trying to be "better parents") and how futile that is when the brain is inflamed. In other words, rewards charts may not be so effective when the child's brain is on fire,

I don't really know the answer, and I'll be interested in response to this thread. But it had been explained to me that pandas is believed to be treatable w abx and steroids. If the kid doesn't get better, perhaps it's something else? Also, for AE, doesn't there have to be the presence of certain bad antibodies, or markers?

I think in some ways it might be a potatoes/pataatoes thing, like you say... It does seem there are some major medical centers that support autoimmunity as the cause for this. This belief is not the same as "we must eradicate the infection" which seems to be part of pandas treatment. But it's also not " your kid needs to be in a psych ward" as was suggested above. The point is -- these medical centers will treat w the autoimmune therapies mentioned in that nytimes story posted on another thread. Many of these treatments -- pex, ivig, steroids -- are also treatments used by pandas doctors. So yes, it is potatoes/pooootatos. --same treatments mostly, but different names. One key difference --above poster is right that the autoimmune doctors don't really buy into abx, while I believe sweedo sees abx as central to the treatment protocol. As a side note -- pandas is not really embraced or accepted by insurance companies, while the autoimmune conditions are to a larger extent. I'm not sure if that prompts the kind of response you got from the health facility you called

Nancyd (and others) -- is this HealthAdvocate, based in Plymouth Meeting, PA?

We were on vayarin for a while. It coincided w a period of extreme hyper and aggressive for my son, so I stopped it and some other things he was taking. Since then, he had improved ( but he's not all better by any means) so I haven't wanted to fish things by adding it back in. I don't know much abr omega 3 vs omega 6. But I did experiment once w a speech supplement that contains omega 3 and it coincided w a terrible pandas period for us. A more seasoned pandas mom told me omega 3 made her kid agitated and does in other pandas kids, so I stopped and things improved a bit.

Hi -- has anyone whose kids are rxed clonidine found that the kids lose their ability to tolerate it after a while? My child has been on regular and extended release, both of which seemed to work well, but after a period, i found it was knocking him out/sedating him. I tried stopping the clonidine but I saw a return of significant hyperactivity without it. I'm just wondering if this is typical with clonidine.

So glad you got a local infusion cventer to help and work with your New York doctors!