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Merry Christmas, Happy Holidays and a Healthy and Peaceful New Year!

Thank you.

Hi - I just thought I'd do an update wrt how therapy has gone. As our dd9 has always responded well to abx/ibuprofen/steroids and has got back to 95% or so, we hadn't done therapy. During a flare some months ago and on the back of reading some great books ('What to do when your brain gets stuck' and 'what to do when you worry too much') our dd asked if there was someone she could talk to about these coping ideas. We are seeing a local child psych who is very PANDAS aware and have been through a flare since seeing her. Biggest issue for this particular flare has been roving anxiety, coming to rest on anything that presents itself, some contamination fears and school refusal. At the height of the flare she was unwilling to apply the strategies but once we got some abx and ibuprofen going and her anxiety level dropped from super overwhelming, she was happy to use the ideas and we've found it to be very grounding for her. It has really given her something to hold onto and given me a starting point/reference point to work to rather than feeling helpless and frustrated. It's been well worth it. As others have posted in the past, at the height of a flare, you may be unable to apply it but it's a great support once things start to calm even slightly. I'd definitely recommend it if you can find a PANDAS savvy therapist who gets the sometimes on/off nature of this dosorder and the changing presentation.

landamom - we open up the methylquard plus and stick it on a spoon with some pharmax probiotic on top. Both dd9 and ds5 will take it like that...

Hi - interesting.. have to look at dosing well away from exercise for dd and ds.. thanks

Hi - both I and my PANDAS dd have this. We are using Methyl Guard Plus which has the B6, mthf, B12 and trimethylglycine (TMG) that uses an alternate methylation route so you get support for 2 areas of methylation. I think it also has B2 but would have to check that....

Hi - just thought it worth a mention, that like junkyardjean, we have also experienced serum sickness. My dd got serum sickness in response to augmentin but your post mentioned getting very itchy on day 8 of keflex. That is the classic time-frame in which to develop a serum sickness like reaction. Not to say this is what you were seeing in your child but I would maybe go google it, see if it fits. My dd was very ill with her reaction. Lots of itching, swelling and joint pain that at time stopped her walking. She was even hopsitalised at one point and missed 3 weeks of school. I wouldn't want her to go through that again. I think earlier reactions can be milder. anyways just a though....

Hi - are you keeping him off yoghurt cos of strep thermophillus.. if so and he really misses it, maybe he would happily eat kefir instead which is usually made with different bacteria. You can check the brands to see what they use (and double check with Dr T maybe) but it may be a battle you can avoid while also getting good probiotics into him. My ds 5 loves kefir... bit more runny than yoghurt but tasty.... just a thought.

Hi - our flares have been amazingly varied in length. We also get the 2 phase thing going on most times, with a return to about 75-90% within a a few days, at best, and say about 8 weeks or so at worst but then we will be left with 25% or so that can takes weeks or months to fully resolve and in the case of our dd9 now never fully gets beyond roughly 95%. What's left is subtle but there. Our ds5 seems to get fully back to baseline but it's tough to tell for him as he got PANS so early. Also both our kids can react to anything that provokes an immune response so that also probably lends itself to a varied healing time.

We had same stuff with dd (at one point no socks, only sandals, 2 tops and just 2 sets of trousers, no hairbrushing and very little bathing). Nothing to offer other than what's already been offered except that for us when it wasn't quite so severe, we were saved from sock h**l by buying socks made for kids with diabetes. They are expensive but are virtually seem-free and for a while it was all she was willing to wear. You can google them. Also Hannah Anderson also makes (at least, used to) some fairly ok seem-free ones that are cheaper but dd wouldn't use them.... Socks don't sound much but could produce multiple daily meltdowns for us. In addition to the "Out of Sync Child" there is the "Raising A Sensory Smart Child" and "The Out-of-Sync Child Has Fun". I can't remeber how much tactile defensiveness is covered in the books though. Good luck

Yep, us too We've been doing really well recently with both dd9 and ds5 showing negligible flares in response to 2 heavy colds, 1 possibly coxsackie but both dd and ds mildly flaring to Halloween. My ds especially, who is my yeasty child. We got some diflucan which I deliberately waited to start until after Halloween. Yeast is absolutely a trigger for ds.

Hi - with hindsight my dd9 exhibited PANDAS symptoms at 3ish while still breastfeeding. Her first recognised episode was at nearly 5 years old when she was no longer breastfeeding. My ds5, we believe, had his first episode as early as 8 months or so and had other episodes from then on and he didn't stop breastfeeding completely until nearly 4 1/2 years old. Admittedly, both ds and dd were only 'snacking' on breast milk beyond about 12 months or so but for us it wasn't a cure but who knows, maybe things would have been worse without.. no way of knowing...

yeh don't touch kashi with a barge pole their cereal used to be full of GMOs - big consumer kick off but don't know if it's changed. Good documentary tio watch is the 'World Acccording to Monsanto'. It's on Netflix for free and I think it's also on You Tube. The "natural" label means next to nothing and certaiinly doesn't exclude GMOs. I think best thing we can do is to encourage any Californians that we might know to vote yes on Prop 37 - labelling of GMOs. It's not watertight (GMO fed livestock wouldn't get labelled) but it's a great start and what happens in CA will hopefully be adopted nationwide 'cos of labelling issues.. like Coca Cola and that carcinogenic ingedient that got banned in CA and they dropped it altogether cos easier to do that than label separately.. Rowingmom - 'bout the kale. We've started growing it. Super easy too, I've got a brown thumb and usually kill everything but kale is really fast, easy and hardy. Small raised bed and a few seeds and we've got more kale than we know what to do with

There is a specific type of tic called echolalia. Here's what wikipedia has to say (altho not always the best source) http://en.wikipedia.org/wiki/Echolalia where the ticcer copies others

Yeh, I find for us the line between tic and compulsion can blur a lot. Not always easy to see where one becomes the other. Thanks for the article

Hi - could it be ticcy rather than compulsion - like echolalia? there's a term when it seems like the compulsion/tics merge.. tourettic OCD? not sure if that's it. I maybe see a touch of it in one of my kids repeating what's said on tv sometimes. .

That's such a great article. I just love the bit about Leckman wanting to change the article with Singer. I could never quite reconcile his co-authoring that article and the phone conversation that he very kindly engaged in with me back when our dd was 1st diagnosed. He was so nice, knowleadgeable and obviously 'got' PANDAS.

So sorry you had to experience this. Makes me fume.. we had a similar experience with Infectious Disease at our local children's hospital. If I can help it, I no longer talk about PANDAS with anyone (doctors or fiends/family) unless I am fairly sure of a pro-PANDAS response. Bit cowardly, maybe, but I just don't have the emotional strength for it. I was just felled when we went to Inf Dis and got a similar response/ I cried the whole way home. I save my energy for my kids now and only go to PANDAS drs. It's difficult but try to brush it off. They are in the wrong not you.

Hi - yeh we're from uk too (well used to be) and I agree about names I'd never heard strep mentioned by name before we came to US. The article is trying to highlight the way people are forced to go direct to hospital to get decent service 'cos wait times are so cr*p in the uk for a doctor rather than infection rates are actually rising. My bother has done this a number of times for his kids for stuff you never would have when I was a child just 'cos trying to get in to see a doctorm in a timely mannerm can be so hard. Wombat - do you mind letting me know who you have found to work with you on PANDAS? Good to hear you found someone.

Hello JuliaFaith- (the 2 weeks was a year ago, unfortunately, but we're still doing very well just not 100%) as to GMO I think it depends on who is doing the certification. I'm reading that USDA organic while only needs to be 80 or 90% organic (can't remember), it should be 100% GMO free minus the 0.9% that they have to allow cos supposedly you can't get round some contamination via trucks, storage, cross pollination etc. However even USDA is now allowing GMO DHA and there are more on the books up for discussion by USDA. GMO Project certified is a good certifying 3rd party but as to others like Oregon Tilth, I'm not sure. I'd e-mail them. I've mailed a number of cos and asked saying that our dr has recommended GMO free - I suspect makes them less likely to lie or bluster/make sure of what they are saying. I've had staff in local natural markets categorically tell me they carry NO GMOs but it's not true - mistake not malice I suspect. GMO is hard especially eating out.. virtually impossible eating out... and being a lazy mom in the kitchen it comes extra hard Saw Dr Mack again today and she;s very nice. dd likes her a lot. You seeing any improvement with her? Take care

another idea - have you looked at methylation and/or pyroluria as possibles?

Hi - just throwing it out there as a possibility but for our ds (we also have dd who is PANDAS) we had luck with either yeast meds or GMO free - did both sa the same time so doing sepeartely now to test what worked for him. Also we had our first 2 full weeks of 100% baseline for our dd when we were out of the country with much lower or negligible GMOs in diet. We are sort of avoiding them but not strictly. We intend to do diflucan for ds again, give a couple of weeks and then try fully GMO free - no easy thing to do as they're everywhere and not labelled. I've seen some drs (and 1 other PANDAS parent) reporting improvement in all sorts of neuro and other chronic disorders when off GMOS. I think the real issue if GMOs are at play would be GMO corn (Btcorn) at a guess, as it persists in blood etc and other GM genes have been shown to transfer to animal gut flora, the idea being you could potentially turn your own gut into a mini pesticide factory and the Bt gene is used in corn as it pokes holes in insects guts. Dunno just an idea... a hard hit in terms of compliance but possibly something to try before you add more meds? Good luck, hope you can get some relief...

Only skimmed the posts so sorry if I'm reiterating... if I use tooth whiteing toothpaste like crest or similar I get ulcers in my mouth.. tongue and inner cheek that go as soon as I quit the toothpaste. Took a few reintroductions for me to be sure but it's a definite link for me. LLM has already mentioned l-lysine. Our ped also recommends this for herpes type mouth sores/cold sores. She says good high dose for a few days but it can be excitory so may up anxiety in some kids....

Yep we used diflucan and florastor HMF/pharmax probiotics and as much fermented type foods as he'd take. Our itching didn't get worse but day 2/3 he was super low, flu kind of and behaviour definitely tanked some until about day 11/12. We are also there today so we may cross paths! going to also ask for more diflucan

Hi - have you treated for yeast. We are with the same fabulous WA doctor, too for dd and ds. Ds gets the all over body itching that has come and gone. He is far worse at night. I can't say 100% that it's yeast but so far we think yeast or possibly removing GMOs from his diet which is no easy thing as GMOs are everywhere but his best remission was when we treated for yeast and were doing our best to get GMOs out. It also coincided with a holiday to Oregon so a bit of confuing input going on. The itching has returned recently. I am going to ask the doc if we can try yeast treatment again. And only after that will we get back on the GMO wagon fully so that I can see what really works rather than muddying the waters.... Hope you sort it out. Good luck..