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Hi - I checked sudden onset (1) but here's our rider for our situation with dd6.... her 1st recognised episode was the classic went to bed sunday night, nothing, and woke up monday with the whole shebang. With hindsight we had seen earlier episodes. Those too were sudden, just not severe. Our possible PANDAS ds2 was also, I believe, sudden onset (separation anxiety) and when he gets ill now his behaviour/sleep/possible OCD stuff tanks within 3 days or so of being ill and very slowly improves over 2-3 months maybe.

Hi - if you haven't already, this faq http://www.latitudes.org/forums/index.php?showtopic=6266 is a good place to start. In answer to your questions.. PANDAS is treatable, different kids need differing levels of treatment. IMO, you don't cure PANDAS but it can go into remission, although Dr Kovacevic in Chicago and others believe that a cure is possible for many kids with IVIG. You can manage future epsiodes, in part, with antibiotic prophylaxis. Many children appear to grow out if it by adulthood, so for us and our dd it is a matter of aggressive management until we get to that point. The treatment for PANDAS would be different than that brought on by allergies as you would want to check for current infection and treat that and attempt to keep future infectious triggers away. However, some PANDAS kids respond to both infectious triggers and other environmental triggers such as allergies. I had it explained to me in terms of these kids' immune systems getting poked until they overreact to many things. The job then is to calm it back down by giving it reprieve from pokes eg using abx to clear infections and then limit future infections, avoiding allergic triggers etc. If that isn't enough, then immune suppression/modulation may be necessary such as steroids/IVIG/PEX/plasmapheresis. Hopefully others will repsond more fully (and better ). Good luck...

I have absolutely no idea what this article is talking about (beyond the concept of synaptic plasticity) just saw the title and thought cool.. but got hopelssly lost trying to read the review of the work that's been done..... someone else might be able to fathom and tell if it has any relevance... Sorry if it's of no use here... http://www.nature.com/nrn/journal/v11/n4/full/nrn2829.html if you need to register to read it, you can do so for free.

Hi - thanks for the response. It's been 24 hours now and so far not a glimmer.. Just not sure if I should be steeling myself.......

Hi - our currently symptomless PANDAS dd6, had a moderate to severe reaction to pistachios last night. (We are aware of this allergy and have a epipen for it, which we didn't need to use). Her face was somewhat swollen, lips swollen, swelling/pain in mouth, pain in throat and gut pain, and then delayed coughing and sniffling. I was wondering if other parents with symptomless kids, have seen a ramp in PANDAS after this type of immediate allergic reaction (rather than the slow burner seasonal allergy type)? Thanks...

fcefxer indeed! excellent!!

Hi - I think we're somewhat lucky in that our dd6 goes into full remission when not in epsiodes and our probable PANDAS son is seemingly doing well at the moment. This forum has been my therapy and life saver but I think I'm "using" it too much. It's like my got-to ritual! I need to wean and come on much less often than I do. It's as though I can't let go of the fear of an impending episode and instead of just enjoying the reprieve from PANDAS I'm worried that I'll miss something, miss the cure (which I suspect a psychologist might say means that I'll have less control over the PANDAS in "1st degree relative with OCD" kind of way ). dcmom - I can remember very clearly (picture it now as I type) thinking "please, don't let it happen to him too, I couldn't bear that", meaning my son. My dd though was comforted by the fact her brother may have it, so she wouldn't be the only one in the family. The thought of having to cope with 2 kids in a full blown episode is scary...

Yup, me too! I use the word remission to people who aren't aware of PANDAS and when I think of well periods, I think of them in terms of remission...

Hi - my dd6 is an absolute classic clinical picture of PANDAS with sudden onset OCD, some tics, chorieform movements and a number of the associated behaviour issues such as ODD, sleep issues, emotional lability, regression in writing and drawing, cognitive problems. She has responded really well to abx and steroids and is, currently, symptom free. We have never had raised ASO or ADNB. We have had a somewhat elevated streptozyme and M proteins once for IgM. We have also come back negative for myco p. I wouldn't put much stock in titers....

I hate it too.. most years. This year, melatonin saved us. It's like I've drugged my kids. They can't keep their eyes open.. I almost feel bad about doing it 'cos it works so well, like I've slipped them a mickey finn The years I fought my dd to sleep, taking well over an hour each night until she was 3 or so. If I'd have known then about melatonin, I'm sure I'd have less grey hair, be less stressed and less fat I'm buying shares....

My dd tested normal last year for TSH, T3&4, Free T4 and antibodies to thyroid. Her T3 was high but this year she was re-tested and her Free T3 is low. (I am borderline hypo.)

Momto2pandas - my ds2 (possible PANDAS - some signs, raised CaMK and anti neuronal) does the multiple start to sentences and words thing. I had thought it was just him/age although it doesn't feel quite right. It can feel more OCD to me 'cos he will also repeat the whole sentence (sometimes) until you mirror his sentence back to him. Trouble with this age for me is, I'm left wondering what is normal or not. Is repeat starts to words or sentences just a normal 2 yr old organising their thoughts/a stammer/speach issues/PANDAS? Is the repeating of sentences, again, just a normal 2 yr old developing their ego and wanting to make sure they are heard? (he does apear to have a healthily developing ego )

Hello. Good stuff.... Could no. 4 use a word different from "rapid" or leave it out all together. Could the auto-immune angle be used on no. 4 too? Such as anti-infective or immune -modulating agents? I know that not every single case can be covered by a diagnostic criteria but I imagine that we are like many other cases in that initial triggering episodes responded well to abx (strep or myco) but later episodes don't and that is when steroids/IVIG/PEX (or time) does the trick. I like the 0-18 years. With hindsight and the benefit of an older child with PANDAS (if you can say that), we have pinpointed our ds' probable earliest symptoms to 7 months old. I really believe this disorder starts way younger with these children than is acknowledged and welcome the opportunity for that to be recognised, despite the difficulties surrounding recognising the symptoms in very young children. Thanks for being so very proactive

Thanks for the responses.. dcmom - yeh, I have seen signs with our ds2 that prompted our great ped to offer abx to him. I wasn't ready at that stage so we did the cunningham test. We then did a steroid burst and we saw some behavioural improvements but the best improvement was in sleep.. waking 8+ times a night, down to none in 5 days. He's currently on proph zith. I think he is PANDAS but just trying to look at all angles. I just keep thinking (maybe in a "first degree relative with sub clinical ocd" kind of way) if the proph zith does it's job and keeps the trigger at bay we may never really know if he is PANDAS or not. Equally, I don't feel like taking him off the abx anytime soon to test my theory!! I should just let it lie and enjoy the good times we are having with both kids (dd6 symptom free and ds2 doing fine, with the exception of his sleep). If Madeleine Cunningham can continue her research, perhaps we'll have a definitive test in a few years...

Hi - so glad you're seeing a good response. This article looks interesting in light of your positive response - http://www.sciencedirect.com/science?_ob=A...d24a7ae3f323d47 Neuroprotective effect of curcumin on focal cerebral ischemic rats by preventing blood–brain barrier damage Curcumin, a member of the curcuminoid family of compounds, is a yellow colored phenolic pigment obtained from powdered rhizome of C. longa Linn. Recent studies have demonstrated that curcumin has protective effects against cerebral ischemia/reperfusion injury. However, little is known about its mechanism. Disruption of the blood–brain barrier occurs after stroke. Protection of the blood–brain barrier has become an important target of stroke interventions in experimental therapeutic. The objective of the present study was to determine whether curcumin prevents cerebral ischemia/reperfusion injury by protecting blood–brain barrier integrity. We report that a single injection of curcumin (1 and 2 mg/kg, i.v.) 30 min after focal cerebral ischemia/reperfusion in rats significantly diminished infarct volume, improved neurological deficit, decreased mortality, reduced the water content of the brain and the extravasation of Evans blue dye in ipsilateral hemisphere in a dose-dependent manner. In cultured astrocytes, curcumin significantly inhibited inducible nitric oxide synthase (iNOS) expression and NOx (Nitrites/nitrates contents) production induced by lipopolysaccharide (LPS)/tumor necrosis factor α (TNFα). Furthermore, curcumin prevented ONOO− donor SIN-1-induced cerebral capillaries endothelial cells damage. We concluded that curcumin ameliorates cerebral ischemia/reperfusion injury by preventing ONOO− mediated blood–brain barrier damage. For us I feel sure BBB integrity is the key. Perhaps for your dd, the IVIGs and steroids were helping to keep the BBB closed rather than lowering the offending antibodies etc in the bloodstream. Hope you keep seeing improvement..

Hi - my dd6 (PANDAS dx) had a CaMK of 165%, 1 upper limit normal range antineuronal antibody and 3 within normal. The test was done when she was symptom free. She had a raised anti lysoganglioside on a different test, the year before, at the end of an episode. My possible PANDAS ds2 had a CaMK of 151% and a raised antilysoganglioside in a possible mild episode. We think our dd had a raised CaMK but no symptoms 'cos of a return to better BBB integrity. My question is - does anyone know of other reasons why the CaMK can be elevated? I have no doubt that my dd is PANDAS but still trying to work it all out for our ds. I should just let it lie.. if it looks like ***t and smells like ***t, then it's ***t. Thanks :-)

Hi - we're from the uk originally but stateside now. Dr T here in the US gave us this name - Dr. Gavin Giovannoni .. he's at Barts in London. Here's his webpage http://www.bartsandthelondon.nhs.uk/forgps...32&pid=7687 I have no personal experience of him, though.... good luck :-)

Hi - a little knowledge can be a dangerous thing...... I was doing a bit of googling on kawasaki's 'cos my niece had this and our ds2 had 5 days of fever with no real explanation during his 1st year and I came across this image http://www.healthcentral.com/common/images...931_10878_5.jpg my dd6 has frequently had this going on with a number of her fingers and I never really thought much about it.. surely this can't only be related to kawasaki's. I do get pomphylox as does her brother (I think due to a form of common eczema called dishydrotic eczema) and I suppose I'd always thought it may be due to this... any thoughts welcome.. thanks

Hi - my aunt, who had RF as a child, later developed Crohn's and her granddaughter had Kawasaki's...

LLM - try this site http://www.oliversacks.com/ he's the dr that the awakenings film was about (and his patients). If you haven't read any of his books, I think they're great. He's super compassionate and really human(e) in his approach. :-)

I need to get my medical records! The winter our dd had her first signs of PANDAS (in hindsight), I'd had a super sore throat and shortly after that developed really bad pain in 1 ankle that lasted maybe 4 days. Day 2 I could hardly walk, by day 4 the pain was almost non existent. Dr did c reactive protein/lupus tests etc but nothing showed. It never came back. Reading this thread, I now wonder if it was related.

Hi - our dd6 has done 1 burst. She had a flare after a flu-like illness (that looked like H1N1 according to dr but swabbed -ve). At the time we started the burst her symptoms weren't very bad (probably 4-6 on Buster's charting system) but were ramping fast and it felt as though we were heading for a bad one. She has had 2 major episodes that start with OCD and 2 minor flares. Minor flares start behaviourally for us. Her symptoms had improved by the second dose. By the end of the burst her symptoms had completely disappeared. We were symptom free for 4-5 weeks, If I remember rightly. At the end of this time a TINY amount of OCD crept in at bedtime. It was very manageable for her, she could talk herself out of it easily. This lasted maybe 4 weeks and then that resolved too. We hit it hard and fast with abx and steroids for 5 days at 60mg per day, which seems to be high but seems to have done the trick for her that time. Her previous bad episodes have taken 2-3 months to resolve the big symptoms with some minor stuff (mood/tantrums/cognitive stuff) taking slightly longer. It felt as if the steroids sat on the symptoms for 5+ weeks, possibly the time it was taking for her bady to work through this episode but who knows, 'cos epsiodes can be so different. I wonder though if we got good results 'cos we caught it early and used a fairly high dose. (she weighs 65lbs)

Hi - my understanding is that florastor is not good bacteria but good yeast (saccharomyces boulardii). You can get a kids florastor but the florastor in capsules is designed for use by anyone (I think). We use it in addition to the usual probiotics. We have had no problems, so far, by combining florastor and Pharmax HCL probiotics. The pharmax probiotics are acidophilus and bifidus (human strain) 24-36 bn per teaspoon. With fructooligosaccharides and freeze dreid apricot so it tastes good (my picky kids eat it off a spoon) and it has no dairy, gluten etc. I've had a couple drs and a highly knowledgeable pharmacist tell me how important the florastor is 'cos the abx won't kill it (it's yeast not bacteria) and it competes with the candida.

I always think that ob/gyns should do a tummy tuck for a bit extre $$$ when they do c-sections.. I'd have paid some extra for that