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You're in my thoughts....hoping for the best for you and your daughter.

Just thought it worth highlighting on the overuse argument (although I do still agree in judicious use in humans too) "A scary stat from the battle against drug-resistant superbugs: measured by weight, 80% of antibiotics are given to farm animals. That stat comes via the blog maintained via the Johns Hopkins Center for a Livable Future. Ralph Loglisci, a project director at the Center, wanted context for a stat that was unearthed by Wired blogger Maryn McKenna: that 28.8 million pounds of antibiotics are sold for agricultural use in the United States. How, Loglisci wondered, does that compare to human medical use? He asked the Food and Drug Administration. A spokeswoman told him that patients are given 7.3 million pounds of antibiotics for medical use — hence the 80% figure. The Livable Future blog has a breakdown of how much of various antibiotics are given to livestock — usually not to fight infection but because the antibiotics make the animals bulk up faster. One might quibble that this count include ionophores, which might not always be antibiotics. But, then again, the amount of tetracycline given to animals outweighs — literally — all of the antibiotics taken by people. That’s a shocking statistic. The problem with all this livestock use is it kills bacteria that are susceptible to antibiotics, leaving those that are more resistant to fill the gap. This is especially a problem because drug companies are having a tough time inventing new drugs to replace those that are losing their usefulness because of rising rates of resistance." From... http://www.forbes.com/sites/matthewherper/2010/12/28/80-of-antibotics-go-to-farm-animals/ Thankfully the FDA has finally put in place some measures to attemtp to combat the non medical uses, too little IMHO and 30 years late after recognising the problem in the 70s but ho-hum....

Hi - not sure if it's the same kind of thing but for some time after my dd was born (a time at which I also had some type of postpartum OCD like obsessiveness) I would feel as though what I was doing was going in slow motion, especially close work like sewing. I felt as though I needed to speed up to keep pace with everything round me. It turned out I was hypothyroid. My mom felt a similar thing when she was younger but she got dxd hyperthyroid. It and the OCDish stuff went away when I went on thyroid meds....

Hi - we also use Florastor. It is a good yeast that crowds out bad yeast like candida albicans. You will also need to backfill with beneficial bacteria. Probiotic supplements should be spaced 3 hours away from antibiotics so that the antibiotics don't kill it off. My kids have done really well with one called 'HLC high potency powder' by a company called Pharmax. You will probably have to order it online. It contains a couple of good strains. Other folks also seem to like Custom Probiotics. They do a number of different products that you will need to order too. We also try to get kefir and other fermented foods in them. They also really like a product called 'Kevita' and some of the kombucha drinks. They all have added sugar though. If he will eat it, good quality sauerkraut is just jam packed with beneficial bacteria. We try to go for good quality supplements and lots of added probiotics in food and drink. You may want to be careful as some parents report issues with yoghurts as they contain a strep thermophillus (sp?) strain that some think may trigger flares of PANDAS although for us that hasn't been an issue. My ds4 does get diarrhea on antibiotics if I'm not really on it. He also has had clostridia difficile but if I get the supps and as much extra from food and drink in him as he can happily stomach, we don't get any issues. Good luck....

Hi - just on the therapist front, Dr keller in Redmond suggested we try Shelly Mackaman also in Redmond. She says she gets PANDAS. She has a lonmg waiting list, 6 months or so and we have yet to see her so can't comment personally but she came highly recommended. Hope you get this flare under control soon.

Hi- I have 2 kids. Ds4 and dd9 both PANDAS dx (really PITANDS as they can flare to varying triggers, even an acute allergic reaction to a food once for dd). They both present very differently. We have experienced one flaring while the other not but also at the same time, eg they will both start ticcing within hours of each other. We have Crohn's, polymyalgia rheumatica, RA, RF, Alzheimer's, diabetes Type 1, Celiac and thyroid issues in the family.

Hi - this sounds like it could be sensory issues to me. Just like kids can become extremely sensitive to noise or lights, perhaps this is a severe form of tactile defensiveness. Dunno, just a thought....

Clavulanic acid inhibits MPP(+)-induced ROS generation and subsequent loss of dopaminergic cells. Kost GC, Selvaraj S, Lee YB, Kim DJ, Ahn CH, Singh BB. Source Rexahn Pharmaceuticals, Inc., Rockville, MD 20850, United States. Abstract Clavulanic acid is a psychoactive compound that has been shown to modulate central nervous system activity. Importantly, in neurotoxin-induced animal models, clavulanic acid has been shown to improve motor function (Huh et al., 2010) suggesting that it can be neuroprotective; however, the mechanism as how clavulanic acid can induce neuroprotection is not known. We demonstrate here that clavulanic acid abrogates the effects of the neurotoxin 1-methyl-4-phenylpyridinium (MPP(+)) which mimics Parkinson's disease (PD) by inducing neurodegeneration. To further establish the mechanism we identified that clavulanic acid inhibits neurotoxin-induced loss of mitochondrial membrane potential and ROS production. Consistent with these results, neurotoxin-induced increase in Bax levels was also decreased in clavulanic acid treated cells. Importantly, neurotoxin-induced release of cytochrome c levels as well as caspase activation was also inhibited in clavulanic acid treated cells. In addition, Bcl-xl levels were also restored and the Bcl-xl/Bax ratio that is critical for inducing apoptosis was increased in clavulanic acid treated cells. Overall, these results suggest that clavulanic acid is intimately involved in inhibiting neurotoxin-induced loss of mitochondrial function and induction of apoptosis that contributes towards neuronal survival.

Rexahn Pharmaceuticals Announces Publication of Study Validating Mechanism of Action of Serdaxin October 3rd, 2011 Study sheds light on Serdaxin as an enhancer of dopamine and serotonin release (SERDA); Novel mechanism may be able to address both negative mood and loss of positive mood in depressed patients Rockville, Md., October 3, 2011 – Rexahn Pharmaceuticals, Inc. (NYSE Amex: RNN), a clinical stage pharmaceutical company developing and commercializing potential best in class oncology and CNS therapeutics, today announced the publication of a peer reviewed study in Neuroscience Letters that validates the mechanism of action of clavulanic acid, the active compound in Serdaxin®, the company’s lead CNS drug currently in Phase II clinical development for major depressive disorder. The published study, “Clavulanic acid increases dopamine release in neuronal cells through a mechanism involving enhanced vesicle trafficking,” shows that clavulanic acid enhances release of neurotransmitters such as dopamine in the brain cell by interacting with key proteins for vesicle trafficking and fusion. “This study is significant because it confirms at the molecular and cellular levels how Serdaxin enhances the release of neurotransmitters in the brain. Previous studies demonstrated the release of serotonin and dopamine in the brain by clavulanic acid in live animals. These results strongly support that Serdaxin’s CNS effects may be due to an enhanced release of the dual neurotransmitters, called as the SERDA mechanism.” said Dr. Chang Ahn, Chairman and CEO of Rexahn. Dr. Ahn elaborated, “Because the effectiveness of currently marketed therapies that modulate serotonin reuptake is significantly limited, there exists very strong therapeutic needs for depression patients who are non-responders, are relapsed, or are non-compliant due to adverse reactions of those therapeutics. Serdaxin positions itself to address these therapeutic and safety needs as the first SERDA antidepressant with excellent safety profile.” Dr. Michael Thase, Chairman of the Depression Scientific Advisory Board of Rexahn, said, “This study illustrates that clavulanic acid may have important effects on monoaminergic neurotransmission, that are the result of interaction with vesicle trafficking and fusion through a novel mechanism involving Munc18 and Rab proteins. Enhancing the release of both dopamine and serotonin to physiological levels in the brain may prove to have novel therapeutic implications for those who suffer from major depressive disorder and other neurological disorders.”

Hi Momwith.... I remember trying to find clav on its own a couple of years ago but will try again. We know a cool, compounding pharmacist that knows his stuff. I'll ask him. When I looked at it a while back there was a drug company (rexahn, I believe) that was doing either 1 or 2nd stage trials of a drug mainly consisting of clav for neurodegenerative and psych disorders but it was still in the early stages. I'll go see where that has got to as well, if I can find any info. I'll post whatever I find out. Maybe a holiday in India is in order. The kids love Indian food I'm grasping around for straws 'cos my soon to be kindergarten ds has been in a minor flare for 3-4 weeks and his only remaining symptom is fairly debilitating separation anxiety. He won't even stay with my dh. Any other time I'd just ride it out but with school starting in 4 weeks I'm panicking a bit......

Hi - my dd had a wonderful PANDAS symptom response to augmentin a couple of years ago but on day 8 started a serious serum sickness reaction and can no longer take penicillins. It was the first time we had tried augmentin and hadn't had the same PANDAS improvement with penicillins prior to this and thought it might be the clavulanic acid that led to the improvement. Clavulanic acid is being researched as an anxiolytic. I have read that a cepholosporin and clavulanate combination is available but from what I can see, it isn't available in the US. Any experience with this? Thanks

Hi - I read some time ago that H2 antihistamines good and H1 bad for the BBB. It was a great study that I read but haven't since been able to find and wondered if i'd imagined it. Based on this previous reading, I avoid H1 antihistamines in my PANDAS kids because the study said that they can increase permeability whilst H2 will downregulate the right type of histamine and lower permeability. This thread sent me searching for the original study which I still can't find but did find these that may be of interest.... http://www.ncbi.nlm.nih.gov/pubmed/10696506 "Histamine is one of the few central nervous system neurotransmitters found to cause consistent blood-brain barrier opening. The earlier literature was unclear, but studies of pial vessels and cultured endothelium reveal increased permeability mediated by H2 receptors and elevation of [Ca2+]i and an H1 receptor-mediated reduction in permeability coupled to an elevation of cAMP." http://www.sciencedirect.com/science/article/pii/0306452292904366 http://www.pnas.org/content/early/2010/10/12/1008816107.full.pdf

Hi - I was wondering the other day (having read recent info re autism and infection in mother during pregnancy and also being aware of infection during pregnancy and schizophrenia) if anyone has looked at sibling PANDAS spread. For example, are older siblings of a dxd PANDAS child less likely to have it and younger siblings more likely to also be dxd with PANDAS. I just wondered if a change to a mother's immune system or an infection, either during or before a pregnancy, may be contributing and if that immune change may be lasting in some way and thus be affecting later pregnancies. Dunno just a thought. I didn't know if it warranted forwarding on or if too off the wall...

Hi - our ped suggests black pepper in either warm water/olive oil.. sorry can't remember which or how much but she says it gets rid of earache. Maybe you could google it.....

Sorry, lurking from PANDAS side .... our ped recommended diatomacious (sp) earth (food grade) for parasites. I was wondering if anyone has had good results. Our ds 4 also itches terribly, especially at night....

Hi - I have had similar grievances with my dh but just to maybe offer some hope.... my dh would get very angry/be unwilling to talk/be in denial etc and I felt desperately alone dealing with 2 PANDSAS kids on my own with what felt like no practical nor emotional support. Now, however, 4+ years on from when this all started, he has come round and I can mention it without fear of yet another rift ensuing between us. It took a while for him to accept... I realise it's cold comfort now but your dh may come round. If he's like my dh it could be his unwillingness to accept what's going on/inability to fix it that is driving it rather than really not believing... hope it gets better for you,

Hi - yeh, 2 kids here, classic dd and not so classic ds. RF and Crohn's in my aunt, my sister has polymyalgia rheumatica, my mom has mild rheumatoid arthritis, I'm hypothyroid. Also got RF on dh's side.

Hi - this may sound a bit off the wall but here goes..... my dd9 has severe epi-pen requiring allergies to pistachios and cashews. She has the same severe reaction you describe. She has also been having lower level reactions to something for a while. The only common denominator that we could see in all the products was corn or one of it's many, many derivatives. However, when she eats whole corn at home we were not seeing the reaction and so were stumped. Having read more about corn allergies and GMO corn allergies in particular, we think what we may be seeing is an allergy to genetically modified corn but not nongmo corn. We buy organic for home, hence, no reaction. From what I'm reading, kids can show reactions to GMO food crops, where they aren't showing reaction to nonGMO. This is a controversial area but we have chosen to exclude all sources of corn unless we know it's GMO free, mainly by choosing only organic where the product might contain any of the GMO food crops eg soy, corn, canola, cotton and sugar unless it's stated as pure cane sugar (beet sugar is now GMOd). Unfortunately, the list of possible ingredients in processed foods that is as long as your arm. Was the coconut popsicle homemade or store bought? If bought, I would check all the ingredients and their source.... sorry to sound a crank but this is the only explanation that has made sense for our dd's reactions. I don't think immunos can test for GMOs. I suspect they use nonGMO for testing but dunno... also I imagine most immunos would laugh you out of the office if you suggested it Here's a link to a list of possibly corn derived ingredients in food. Not to say you're dealing with it but just for completeness. I hadn't realised how ubiquitous it was and with 90% of all corn grown in the US being GMO it was a scary list for me http://www.cornallergens.com/list/corn-allergen-list.php

Hi - I found this site that sends GMO free and organic foods to you by the box, in the western half of the country. Don't know how good they are or price comparison but might be a good idea for those without access to decent stores that sell this stuff..... http://www.greenpolkadotbox.com/

Hi - we're lucky in that we have Trader Joe's who guarantee all their own name brand products GMO free. We also have Wholefoods and a great local coop PCC. You even have to double check organics 'cos depending on the certifying body they can contain non organics eg USDA certified organic can contain up to 5% non organic. I'm e-mailing all the companies whose products we use and asking if they are GMO free and saying how much we love their stuff but that we can't continue to buy unless they can guarantee its non GMO. Also all conventional meat and dairy, eggs etc is fed GMO unless it's stipulated 100% organic or 100% grass fed. We found a local ranch that does 100% pasture raised beef, sheep, pork and chickens. It works out cheaper than buying organic at the store but you gotta have freezer space.

Hi - I've been fairly careful, or so I thought, about what I feed my kids, especially since PANDAS raised its head. But the more I read about genetically engineered foods, the more it scares me. I hadn't realised the extent of it in the food chain (70% or more of corn, canola, cottonseed and soy is gmo). And I am increasingly finding articles that cite GMOs as instigators of autoimmune amongst other diseases. This article particularly caught my eye 'cos of the gut/brain connection. Are Genetically Engineered Foods Promoting Autism? http://www.responsibletechnology.org/autism I realise that this is a controversial subject but when it comes to food, I intend to follow the precautionary principle and won't be knowlingly feeding my PANDAS kids anymore GM.

Hi - I usually post on the PANDAS forum but thought I'd copy my post here... Hi - I just thought it worth mentioning for those looking for triggers for whom allergy may be 1 of them (our dd has had PANDAS flares in response to allergic reactions to foods in addition to infection)... Our dd8 has known, fairly severe, food allergies to cashews and pistachios. She also gets smaller reactions at times that we have, until now no,t been able to pinpoint due to seemingly conflicting responses. When she would have these reactions the only common denominator in all the foods was corn or a corn product. However, when she had corn kernels or whole corn at home, no reaction. Doing some reading on the subject, I think we've discovered that she is allergic to genetcially engineered corn but not nonGMO. We buy organic for home but somewhere around 70% of non organic corn is genetically engineered. Supposedly, it is increasingly common for people to be showing signs of allergy to GMOs but not the nonGMO. I just thought it worth mentioning, as it really had us stumped for a while. Allergies aren't her big triggers but we're happy to lower her immune system provocations. thanks

Hi - I just thought it worth mentioning for those looking for triggers for whom allergy may be 1 of them (our dd has had PANDAS flares in response to allergic reactions to foods in addition to infection)... Our dd8 has known, fairly severe, food allergies to cashews and pistachios. She also gets smaller reactions at times that we have, until now no,t been able to pinpoint due to seemingly conflicting responses. When she would have these reactions the only common denominator in all the foods was corn or a corn product. However, when she had corn kernels or whole corn at home, no reaction. Doing some reading on the subject, I think we've discovered that she is allergic to genetcially engineered corn but not nonGMO. We buy organic for home but somewhere around 70% of non organic corn is genetically engineered. Supposedly, it is increasingly common for people to be showing signs of allergy to GMOs but not the nonGMO. I just thought it worth mentioning, as it really had us stumped for a while. Allergies aren't her big triggers but we're happy to lower her immune system provocations. thanks

Have you looked at mast cells.. not sure how relevant but those with mastocytosis (and I assume those at the low end of the spectrum like ds who hasn't got mastocytosis but seems to have abberant enough mast cells to cause perma itching) can get interstitial cystitis. here's an anecdotal loink (blog post) https://www.inspire.com/groups/rare-disease/discussion/systemic-mastocytosis-and-the-bladder/ here's a more formal one. http://mastcellmaster.com/documents/Interstitial-Cystitis/Mast-cells-IC-Urol-2007.pdf dunno, probably no link but just wondering. Also saw another artciel where IC is mor ecommon in those with autoimmune. The pain bit of IC seems to be missing for most kids but I dunno maybe there are variants.

Kimballot - I wish I could sum it up in such a great, sucinct way when faced with an incompetent dr. I might have to have to get what you said tatooed on my inner wrist... nice