dut

Herllo. I was wondering if anyone had any links/info on stuttering or other ways speech may be affected in PANDAS. I mentioned our ds' stuttering as part of his presentation to someone studying speech path and they expressed an interest in learning more... Thanks

Hi - I seem to recall someone posting a paper written for OTs wrt PANDAS and how it might affect children in the OT setting. If anyone has a link I'd be grateful... thanks

Hi - Our ped has recommeded Mireva. here's the blurb.. she really rates it 'Enjoy the benefits of curcumin in a unique, highly bioavailable new product from Thorne Research. It is commonly known that when taken orally curcumin is poorly absorbed. Meriva is a highly bioavailable curcumin extract that uses phytosome technology to significantly increase its absorption. Meriva Curcumin Phytosome is an advanced botanical extract that binds curcumin to phosphatidylcholine (a chief component of human cell membranes), and provides better bioavailability than any other curcumin extract available today.' $30+ for a bottle of 120 capsules 500mg each seems to get rave reviews....

Yeh - recall Dr T saying that hormonal changes can affect girls. He felt the contraceptive pill could pose problems, as could pregnancy. Ocd is very common post partum and I certainly felt my OCDish personality swell post 1st baby. My mom went thru the menopause with virtually no noticeable physical symptoms but did develop kleptomania for a bit. my father had to go in every shop with her so she wouldn't take stuff for a while :-0. She'd never had his before. Klepto is considered by some to be an OC spectrum disorder. Her dr at the time said he'd seen this before in menopausal women. I imagine that hormones could play into this in many ways.

Hi - all I know is that although the range for TSH is up to 5, any half decent endo dr will want to see it at around 1.5 and no higher. Also you want to be checking Free T3. Progressive endos and other drs say you should be checking Reverse T3 too as it, in my words , sucks up available T3 so all can look good on paper but you still have an issue. A really progressive endo will treat based on symptoms rather than numbers. When I first got dxd and started on T3 supplementation (cytomel) the turnaround was significant in just 5 days and for me it was all mood/OCD-ish personality +/nailbiting/not being 'present'. And I was only just borderline low on numbers. My endo has also told me (when I showed him some dd's nos.) that numbers can get worse shortly after infection but then pick up again on their own....

me too.. don't know if it would be the same for all salts. We no longer get the 'table salt' variety but buy the (hopefully) mineral laden one. Dunno... it's supposed to make vast difference in health eg hypertension etc.. mineral heavy salt is supposed to help balance blood pressure but don't know in terms of this.....

http://www.bbc.co.uk/news/health-21685022

S&S - indeed, why not! You could be a PANStheist instead of a pantheist

bumping this cos althou' it looks at TB it's intersting 'cos it discusses how bacterial infections get lost within concurrent viral infections...

Link http://www.bbc.co.uk/news/health-21619594

Sorry - try this a link to the article discussing the study that has a link within it to the Lancet study abstract http://www.bbc.co.uk/news/health-21613924

Link to abstract http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)62129-1/abstract

rowingmom- I think you're right. The damage has already been done and we're left with trying to mop up and just do the best we can.....

LLM - my turn to apologise if you thought that you made me uncomfortable because you didn't Questioning back and forth is what makes this forum so great. A good heated debate helps us all. I more took issue with some of the other posts and what felt like an unnecessary level of sarcasm. I haven't read all of ThinkGut's posts so maybe I missed something but from the ones I have read, they haven't been 'personal' in any way. I've been there, soapboxing with some new info, sometimes not always the most sensitively, as I get caught up in my own excitement but I have always been able to do so without feeling personally attacked. I would hate to feel as though I, or anyone else, couldn't proselytize from time to time and it be taken in the spirit in which it is being offered and yes, questioned and knocked down even but just not so personally.

Rowingmom- have you looked at gmos in the diet at all? I hadn't realised until last year just how much was there was out there and just how, potentially, bad it could be for the gut. Bt corn in particular seems to pose a unique threat to gut integrity. It's a super polarised debate but we are trying our best to get it out of the kids diets which is not easy, especially with corn byproducts being in so much stuff but we think we see a difference when we get good compliance. The worry, if you buy into the anti-gmo argument, is that it isn't an issue of lowering amounts but, rather, total avoidance because of gene insertion into the bacteria in your own gut. So you could maybe go gmo free for 2 months but eat a gmo corn chip and have issues. We're hoping that at least partial avoidance will help 'cos we just don't seem to be able to do total. I watched "The World According to Monsanto" (free on Netflix) and coulen't get off my soapbox for weeks. Obviously, still can't

Hi - I'm sure ThinkGut doesn't need anyone rushing to the defense but just because other treatments work to help alleviate PANDAS symptoms or even if we (or the big name docs for that matter) feel that the etiology has been nailed down, and it hasn't, doesn't mean that gut bacteria couldn't be at the base for all this. Some kids get strep with no problem... what makes our kids different? Why is infection so disabling for them. Who's to say that the immune issues wouldn't have ever been there had these kids' GI tracts been working optimally. Methylation can be part of the problem for some, same as zinc/copper etc etc etc but perhaps gut is as big or bigger part of this for our children. Our childrens' guts are under a bigger assault now than at any time. GMOs, abx, modern wheat, lowered consumption of fermented foods, loss of contact with soil. Is ThinkGut offering the complete answer, probably not, but neither are our drs, even the experts. If they were we wouldn't all be here reading the forum so avidly. If they are experiencing good control of symptoms with these interventions alone.. good for them. Gut health is the basis for my kids treatment and while we still have flares and still treat with infrequent abx and ibuprofen, I do wonder if they'd never had abx (IV during c-section and beyond,) eaten gmos (90% of processed food) and had a more natural diet would we be dealing with this or would they be able to better deal with what their genes and life throw at them?

Hi - While I agree with nicklemama that the slow/dawdling stuff could well be OCD kicking in, we get that a lot with our dd (and a general slowness/motivation issue in extended family members) and for her it isn't OCD but, just that, a seeming loss in motivation and drive at a really low level. Low levels of dopamine can cause both this and aggression and would appear to be part of the issue for our dd as she comes back low for dopamine, serotonin and norepinephrine.

Apologies if this has already been suggested or you are already doing this but, for my 2 PANDAS kids, ibuprofen is an absolute godsend. It has kept my dd in school through her latest flare (anxiety, ticcing, school refusal) and has kept me from strangling my ds in his latest flare (aggression, rage, impulsivity, hyper). We do full dosing 3 times a day and get a fairly instant lowering in symptoms. It doesn't work for all kids and some can't tolerate it but it is worth a try if your dd can tolerate inbuprofen and is willing to try it..... I think that for my kids it even shortens the duration of their flares.... perhaps a positive feedback loop in lowering inflammation and a nice knock on effect for the blood brain barrier, dunno but it works. good luck...

Good timing! I am about to contact my dr because of the same kind of issues. 3 years ago (oct) following an infection (congestion sore throat etc) I started with finger joint followed by wrist, elbow and finally knee and ankle pain. 'cos of RA in the family I was referred to a rheum. They did rheumatoid factors CRP and ESR.. all came back normal and I was sent home with a "come back if it hasn't gone in 3 months". It did go but has reappeared to a lesser extent (hands mostly) each year at about same time. This year it came back as dd flared in Nov. It hadn't completely resolved when ds swabbed +ve for strep. At same time the thumb and finger MCP joints got worse. My questions will be - can we test for RA again, could it be post infectious arthritis (reactive I think it's called) and (don't laugh) but could it be mild ARF (also in family) is that something that can present mildly like this? let us know how you get on......

Hi - yeh, I think the point that the hygiene hypo is trying to make is that the reason our kids have these immune issues is cos they weren't exposed early enough. I'm not sure I completely buy into the hypothesis as it stands but I do find it odd that as a society/culture we're happy to cram our kids into daycares etc from very early ages but won't let them play in the dirt. But perhaps I'm a special kind of germaphobe. Animals and soil don't worry me but coughs and sneezes do

You can buy rinseless soap and shampoos, if he could/would tolerate those. Would he be up for a haircut/buzzcut?

We haven't used proph abx or longterm treatment abx for either dd or ds for a couple of years. Dd had a severe serum sickness from Augmentin and ds gets yeasty very easily and also had had c-diff. Both of my kids react to other things as well as strep so the proph abx didn't seem to lower our number of flares. Also, they both get better eventually and get to almost baseline at some point so longterm abx was never a help as I don't believe we were dealing with ongoing infections. Both kids seem to do just as well with treatment doses of abx for usual duration 7-10 days with lots of ibuprofen when we get a flare. Ibuprofen is the really helpful drug for us. Inflammation, post infection, would appear to be our issue. I think for my kids the BBB and keeping it closed with lower levels of inflammation is key.

Okay - so I've probably got this all wrong but..... Am I correct in thinking that Cunningham et al were saying that lysogangliosides get caught in the autoimmune crossfire cos of the molecular mimicry of the strep epitope n-acetyl-glucosamine? If I've got this right, could this in any way be why my ds seems to react so badly to glucosamine. I get that they aren't the same chemically but could they be near enough? Look enough alike? This is where I'm sure some of you are sniggering.. cos "yep, those couple of molecules really change things" as my more chemically minded dh might say but..... could, just maybe, his immune system see glucosamine and it looks enough like the strep epitope it's seen before and it starts pumping out anitbodies that also cross-react with his lysogangliosides. He had elevated antilysos on Cunningham. Twice we have tried to introduce glucosamine for gut health but with fairly terrible results.....

thanks for the responses eager to see what kind of results people are getting....

http://www.bbc.co.uk/news/health-21372790 unfortunately doesn't link original study....