EAMom

Hmmm...well what I don't understand is that (I think) they are saying only 4% of those with anti NMDAR encephalitis had psychiatric episodes. But isn't there some selection bias going on? I just wonder how many folks with mainly (or all) psychiatric symptoms are even tested for this?? So how many are missed??? It's quite possible the percentage of anti-NMDAR with pure psychiatric symptoms is much larger but these cases never get properly diagnosed/tested (since they only have psychiatric symptoms) and are locked up in the psych ward instead.

Here's an interesting summary, "progesterone and the nervous system ". Use in men and boys is also mentioned. ADHD is also mentioned. http://www.healthwatchersnews.com/2010/09/progesterone-and-the-nervous-system/

Hmmm...might be good for those PANDAS kids that can't sleep??

Here's a thread on Chiari http://www.latitudes.org/forums/index.php?showtopic=8978

Rowing Mom, Thanks for all the input. Yes...I wonder about the cost of the Rx. And even when covered, the copay might be more $ than just buying the OTC stuff (since a tube will last a couple of months). Since the DIM is already coming, I think I'll start with that in addition to the Pro-gest all at the (low) recommended dose. Then, I'll play it by ear. I guess I shouldn't be too worried about progesterone dominance. When I was pregnant (both times) it was awesome because for once I had NO migraines. Loved that! My main symptom (although I also get the menstrual migraines) that I am worried about now are the flooding periods. Eamom PS did you find the cream made you sleepy?

Hi Rowing Mom, That is an interesting link. What dose of the cream are you using? The Nat Pro lady is recommending a higher dose vs the others. It's hard to know what to start with. I have many symptoms of estrogen dominance (I'm 48). I've also ordered some DIM, since it looks like many people are using the 2 together. http://www.amazon.com/Natures-Way-DIM-Plus-Capsules/dp/B00014IGXS/ref=sr_1_2?s=hpc&ie=UTF8&qid=1380815908&sr=1-2&keywords=Dim

I just ordered some of this stuff for myself (not PANDAS related)... lots of good reviews. I'm wondering if any the teen/adult PANDAS sufferers have tried it and what the effect on PANDAS symptoms were? http://www.amazon.com/Emerita-Pro-Gest-Cream-tube-PACKAGING/dp/B000IMQE5U/ref=pd_sbs_hpc_1

With the mice it seemed they needed a low fat diet to keep the "skinny mouse gut bacteria" "The fat mice that got food high in fat and low in fruits and vegetables kept the gut bacteria from the fat twins and remained fat. The thin twins’ gut bacteria took over only when the mice got pellets that were rich in fruits and vegetables and low in fat." http://www.nytimes.com/2013/09/06/health/gut-bacteria-from-thin-humans-can-slim-mice-down.html?pagewanted=2&_r=0&partner=rss&emc=rss

I don't know who Dr. N is (Nicolaides??) but I would try a different doctor at this point.

Be careful of steroids if there is any chance of Lyme. Also, prior steroids will affect the results of the Cunningham Test.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/ Many antibiotics are discussed in this paper. "The role of the immune system and, more importantly, its dysregulation in neuropsychiatric disorders has not only hinted at a potential pathological mechanism but may also provide new therapeutic alternatives. Antimicrobial agents are an appealing class of compounds owing to their inherent immunomodulatory properties. In addition, several of these compounds have been shown to have direct CNS effects, which may further hint to their efficacy in the treatment of some neuropsychiatric disorders, particularly those with an established or proposed immunological component." But, I agree that chronic infection (eg Lyme or strep lurking in the sinuses or tonsils) may be another big reason kids relapse off antibiotics.

also from IOCDF: "Use of augmentin has anecdotally been found to be more effective at a relatively high dose as well as the cephalosporins (cephalexin, cefdinir) and azithromycin." http://www.ocfoundation.org/PANDAS/

Share this with your doctor http://www.urmc.rochester.edu/news/story/index.cfm?id=981

If having him in your bed is a problem, can you set up a little sleeping bag (or futon or mat) in your bedroom where he can crash if he doesn't want to be alone in his room?...and tokens for "not waking you up" if does decide he needs to sleep in your room?

http://cumberlink.com/news/local/article_77bead1e-0f7d-11e3-b9a3-0019bb2963f4.html#.Uh3aLYiVpjw.twitter "Last week CDC officials said Lyme Disease affects ten times as many people — up to 300,000 across the United States — than previously known. The organization cited Pennsylvania as the leading state for reported cases nationwide."

If you don't do antibiotics after IVIG your chances of needing a repeat IVIG and chronic PANDAS are MUCH higher. Antibiotics won't 100% prevent every flare (esp viral), but they do help a lot. Antibiotics also have other properties (immune modulating etc) which can be very helpful for PANDAS kids. Here is a recent article by Dr. Murphy "Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/

I think Dr. B will treats adult. I know Dr. T has patients in their 20's.

Are you sure Lyme isn't a factor with your child? There is a lot of Lyme in PA and it seems like many PANDAS kids (esp. in that area) end up finding out Lyme is an underlying trigger. Most Lyme docs will use long term abs to treat their patients.

wait...she can sign in but doesn't have permission to reply to threads???

Never mind, she got in!

I know somebody that keeps trying to register but she never gets the confirmation e-mail to join. It's not in her spam folder. Does anybody know anything that might help?

T. Mom --do your kid(s) have Lyme? Is that a new finding?

T. Anna yeah, the problem with Dr. K's ethnic findings is that his patient population is extremely biased. Lots of PANDAS goes undiagnosed and certain demographic groups (think kid in the foster care system, or single parent with no computer, no education, culturally doesn't know to question the first misdiagnosis and research PANDAS, unable to travel or see specialists, or pay out of pocket for IVIG) are NOT going to be flocking to him. He's also in the midwest. Here's a study in Polynesians..."strep, OCD, autoimmune, depression, illicit drug" use are all mentioned but I don't see "PANDAS" in the summary! http://www.ncbi.nlm.nih.gov/pubmed/12860788

Here is a link to the chart in the study http://www.ijhg.com/viewimage.asp?img=IndianJHumGenet_2013_19_2_196_116116_t1.jpg So, according to the study, all PANDAS kids had at least 1 A allele, and most (86.5%) were AA. None of the controls were AA and most (91.4%) were GG. That doesn't seem to be the case here (so far)... Maybe the difference is strictly genetic (Turkish vs non-Turkish). Or, maybe there is a difference in US vs Turkey due to different strains of strep. Maybe in the US we now have strains of strep that will trigger PANDAS in the GG's. Or maybe in the US we have more underlying Lyme, which makes GG's vulnerable to PANDAS.

Norcalmom...I have heard from a couple of PANDAS moms in another group and both their kids are GG as well. So, you are right that this may only apply to Turks. Hopefully more will chime in.