ThinkGutBacteria

It's awful, I know. For a quick fix, use melatonin to quell the anxiety and help everyone sleep. It's very safe for kids, they even give it to infants and it's really hard to overdose on it. Most people who don't find it effective use too high a dose, like 3 mg. Buy the 1 mg liquid, I think Natrol is the brand we use--it's cheap and widely available. It requires 4 droppers full to reach 1 mg. BUT only give her 1 dropper full 20 minutes before bed (total dose will be 0.25 mg). We put it in chamomile tea w/honey for our DD7. She wakes up well rested and has far fewer anxiety issues in the evening. Magnesium works well too. If she doesn't eat magnesium rich foods like almonds or sunflower seeds, you can even try nightly baths with 2 cups of epsom salts/tub. A little magnesium may absorb into her skin. Then buy yourself some Baby Jarro-dophilus probiotics. Give her 1/4 tsp/day. Do you have her on vitamin D? Does your daughter still have her tonsils? Does she snore? Hang in there. There's nothing worse than watching your child suffer. But don't give up and you'll find a plan that works eventually. John

Just FYI, there's this microbiologist named John Tagg formerly of University of Otago in New Zealand (home to Gerald Tannock, a giant in the probiotic field) who's discovered a strain of Streptococcus salivarius that kills Streptococcus pyogenes--the S in PANDAS. He claims it drastically reduces S. pyogenes invasion of host tissue, and started a company to sell it as a probiotic. Since health claims are legally thorny, he's marketing it as a breath freshener, which apparently it does as well. The name of the product is Kforce (The "K" comes from the strain name, S. salivarius K12) and it's for sale in the U.S. at BreezeCare.com Theoretically, it could help reduce flares in our kids. The probiotic lozenges aren't cheap, but it might be a nice alternative/complement to antibiotics. S. salivarius is included in some pill-based probiotics, but I doubt they'll "work" in your gut. With bacteria, environment is everything. A very large proportion of antibiotics currently on the market come from soil-based Streptococcus species who make the killer compounds to fend off environmental competitor species, so the treatment makes biological sense. S. salivarius and S. pyogenes are natural residents of human mouths but very few S. salivarius are potent S. pyogenes killers. Anyway, it might help when kids in school are all coming down with "strep."

So there's this Harvard professor who's close to possibly curing type 1 diabetes (the autoimmune version) with the BCG vaccine (for tuberculosis). She thinks it holds promise for other autoimmune conditions as well. Is there anyone out there whose child has received this vaccine? Not sure just one dose would help (Dr. Faustman used 2/month) but I'm curious. http://www.faustmanlab.org/clinicaltrial/clinicalt.html

Avoidance is really tough (especially at school during the winter). Here's an article that might be of interest entitled, "Lactobacilli Reduce Cell Cytotoxicity Caused by Streptococcus pyogenes" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3067128/ You can get probiotics or (prebiotics that feed probiotics) into a third-grader by mixing the white, flavorless powder into vanilla ice cream (or dairy-free alternative).

Thanks! I see this topic quite frequently on this board but have yet to figure out its link to PITAND. I'm assuming people with heterozygous or homozygous mutation are more susceptible to PANS/PITAND?

ThinkGut - do you have a Pandas child? Is s/he on antibiotics? I have two girls, the oldest is DD7 PITAND (not MD-diagnosed but TOTALLY PITAND). She's a sweet, smart, beautiful child, but oh man, what a difference between her and her non-PITAND (fingers-crossed) sister. We're doctor-shopping at the moment. Been through a couple already, of course. As for supplements, we sneak in multivitamin, B-complex, liquid vitamin D (2,000 IU/day), Baby Jarro-Dophilus w/FOS and GOS (one-quarter to one-half tsp/day), FOS powder (approx. 5 grams/day), glutamine when I can, and melatonin at night (which works very well). we also try to provide magnesium-rich foods like almonds, but she, of course, doesn't eat much. I'm thinking butyrate would help immensely, but I need to do more research to make sure it's safe. Her tonsillectomy/adenoidectomy last year helped SO much, but a recent respiratory infection led to a relapse. Although still present when she gets sick, her tantrums/anxiety/sleep disturbances/tics/regression are nothing like before her operation, so we're managing with supplements for now. (I don't like the idea of long-term Abs.) Still, I live in fear of serious relapse or worsening. My wife has an autoimmune condition and it's all so overwhelming. I probably don't have to tell you guys about that though...

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well. As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible.

(I should add that I believe genetic predisposition for autoimmune disease comes from both mama and papa. There's NO intent to blame here, only to solve the riddle.)

Pardon the query if it's been asked before but how many of our kids with PANDAS/PANS/PITAND have evidence of autoimmunity on the mother's side of the family? (Besides mine)

Gut bacteria influence the body’s use of vitamin B6, which in turn has profound effects on the health of nerve and muscle cells. They also modulate immune tolerance and anxiety-related behavior. Just search on gut-brain axis. Effects are highly strain-specific, however. Some beneficials identified so far include L. casei, L. paracasei, L. rhamnosus, B. infantis, B. breve, among others.

Insomnia and headaches are classic signs of sleep apnea. Please watch the (fairly entertaining) video lectures of neurologist Stasha Gominak, MD on YouTube. She's not selling anything. Sleep medicines will only blunt the symptoms. Seriously, before you fill the script...http://www.youtube.com/watch?v=h7cbBB1c0IM

In addition to making vitamin K2, beneficial gut bacteria can make a huge difference in the brain. A new study just published says it well... "Recent scientific studies shed light upon the intricate relationships between the intestinal microbiota and the gut–brain axis. Gut microbes may communicate with the gut–brain axis via production of neuroactive and neuroendocrine molecules such as serotonin, GABA, histamine, noradrenaline and adrenaline [Forsythe et al. 2009; Bienenstock et al. 2010]. A metabolomic study using germ-free mice demonstrated 2.8-fold higher amounts of serum serotonin in conventional mice compared with the level in germ-free mice, although direct evidence did not demonstrate production of serotonin by enteric bacteria [Wikoff et al. 2009]. However, other intestinal microbes such as Lactobacilli can convert glutamate into GABA [Higuchi et al. 1997; Li and Cao, 2010; Su et al. 2011], which functions as an inhibitory neurotransmitter in the central nervous system and may play a role in pain inhibition. Administration of L. rhamnosus JB-1 to mice resulted in altered patterns of GABA receptors in the brain, a reduction in stress-induced corticosterone and diminished anxiety- and depression-related behavior, all of which were absent in Lactobacillus-treated vagotomized animals [bravo et al. 2011]. " SOURCE: Effects of probiotics on gut microbiota: mechanisms of intestinal immunomodulation and neuromodulation Peera Hemarajata and James Versalovic Department of Molecular Virology and Microbiology and Department of Pathology and Immunology, Baylor College of Medicine, Houston, TX, USA; Therap Adv Gastroenterol. 2013 January; 6(1): 39–51.

Anything that improves sleep helps the "oppositional" behaviors at our house: melatonin, tonsillectomy, vitamin D, and magnesium. For reall neat user-friendly lectures on the link between vitamin D, magnesium, and sleep, check out Dr. Stasha Gominak's videos on YouTube. She's actually pretty funny for a neurologist. -John

I don't think all vaccines are created equally. The real problem, as I see it, is our collective ignorance on the influence of vaccines on gut flora, which is evidently a master regulator of early immunity. Without considering evolution, it's a puzzle, but evolutionarily, it makes all kinds of sense. In short, the bugs we've evolved with (helminths, bacteria, viruses in soil, water and animal feces) were copious and inescapable in human evolution. They've learned to turn down our immune system. In their absence, only our more aggressive immune cells are active, leading to allergies, asthma, inflammatory bowel disease (Crohn's and ulcerative colitis), many autoimmune diseases, and other chronic inflammatory conditions such as depression and (I'm betting) PITAND. On the other hand, "epidemic" bugs like measles are evolutionary new-comers arriving only after humans reached a population density large enough to sustain their transmission (about 5,000 years ago). They are therefore less likely to regulate our immune responses. The hygiene hypothesis, as it's known, has been revised and is now on the verge of being mainstream dogma. The amount of real nuts-and-bolts science on this topic is large and growing. Search pubmed for names like Graham Rook, Paolo Marticardi, Erica Von Mutius. For a non-scientist's account see the excellent book "An Epidemic of Absence" by Moises Velasquez-Manoff. Also look for his articles in the NY Times, Salon, and elsewhere.

Doctors and others respond to the Boston Globe article on PANDAS. http://www.bostonglobe.com/magazine/2012/11/11/letters-editor/svmAC2JTIMDWkr7FbpF49L/story.html

Shigella is another bacterium that has learned to turn off the antimicrobial peptide made by vitamin D. Interestingly, it can be overcome by butyrate (a fatty acid made by "probiotic" gut bacteria). See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108617/

Normally, vitamin D helps produce potent antimicrobial compounds, but some bacteria develop resistance. I found an interesting paper showing the paradoxical effect of vitamin D on streptococcus pyogenes (the bacterium responsible for strep throat). If that's the offending organism, it may explain why vitamin D helps in some cases but harms in others. See http://www.ncbi.nlm.nih.gov/pubmed/23093388 (Boston's Children's Hospital is an affiliated teaching hospital of Harvard Medical School.)