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I feel that for our dd BBB integrity is key. There is increasing evidence that Alzheimer's is a BBB disorder (my father had Alzheimer's and wonder if this is the weak spot for our family) and the following link introduces some recent research that looks at the role of infection and TNF in the progression of dementia in Alzheimer's patients. There is lots more in the literature about cytokines (eg IL-6) and the development of Alheimer's. Dr T told me that the girls he has seen have had some backsliding if given the contraceptive pill. There are also papers out there on the increase of IL-6 amongst those taking the pill. Perhaps more out there on a limb.... night terros run in our family too. PANDAS dd will get these (only since the PANDAS started) at the first hint of a fever. I've heard other parents talk of their children's visual hallucinations often having a green/blue colouring to them. Night terror "creatures" are nearly always greenish. Is this another sign of proinflammatory cytokines leading to a breach in BBB? I've read that the BBB matures at puberty. Is this why PANDAS remits/ends for so many at this time?

Hello I also feel that, certainly for our dd, exacerbations follow opening of/lowering of integrity of the BBB. Strep triggers the inappropriate immune response and then other pro-inflammatory events open up the BBB. That's how, I believe, she could have a high middle range CaMK when out of exacerbation. Then, along comes a flu-like illness, BBB integrity lowers and the nasties get through.

Hello I agree with mati's mom... get to a dr who believes in PANDAS and who is knowledgable. If you can't get to one, could you do a phone consult.. would your ped be willing to take advice from an "expert" and prescribe what they suggest? If you haven't really got family or some other support on board then you really need a good dr......keep us informed.. good luck

Hello Our dd was in the low level, early stage of an exacerbation and we were at the ped's discussing that and following up our ds's steroid burst. Our ped is fully on board with PANDAS and was willing to swab anything that could be easily swabbed :-) All cultures came back negative but the more I think about it.... e our dd had just come through a flul-ike illness that the ped thought was H1N1 but she tested for that and came back negative. I'm now thinking she could have had strep... in the past she has flared when she has had similar illnesses.. sort of cold like with tummy trouble. Symptoms are.. starts off with some nausea and maybe some low level vomiting. No diarrhea. Low grade fever, malaise, cough, slightly sore throat and, sometime in, may develop just a slight snuffle. She doesn't have flares in reponse to just a cold, only seems to happen when it's a fever type illness, no usual cold symptoms but with tummy issues......

Yes, you can absolutely get Group A strep on the bottom.. perianal strep. It can hide out in the anal tract too. You can also get it on the skin elsewhere. When our ped last swabbed our kids she did their bottoms, noses and throats.......

Excellent.. thanks for that. I'd thought about that a number of times but never bothered to find anything to back it up...... now I can argue from a psoition of smugness!!! :-) PS if you're interested in this issue in general "The Omnivore's Dilemma" is an excellent read....

I thought that too but our ped gave the go ahead as our dd was experiencing headaches on the steroids.. but she only did the 5 day burst.. perhaps longer bursts would be more of an issue with nsaids.. I still didn't give it at the same time tho, just to be safe :-)

I apologise up front for any men who don't fit this stereotype but I feel that the stereotypical male tends to ignore medical issues and won't go to the dr thinking it will take care of itself and go away eventually. They may also apply this to their kids..... My husband is on board with the PANDAS diagnosis for our kids(s?) but still thinks I'm obsessive for searching for answers.. the attitude I get is "ok, so yet another dr...... what this time?" said with a really sarcastic tone. I think that as a really generalised rule men and women tend to deal with problems differently.. certainly for us I like to face them head on and my husbnd doesn't. I do all the dr stuff alone and it can be lonely but you've got to go with what you know to be right for your child. You will second guess yourself and a doubting husband will only make things worse.... just stick with what you feel to be the right.....

Thanks for the responses... I'd be interested to read the potatoe book... Falling Apart - when I looked up valerian one of the things it's believed to do is increase GABA. I'll try all those... thanks. How are things with you and your little girl? hope you're doing ok....

Hello I was wondering if anyone was using these on a child as young as 2? Our 2 year old ds no longer naps (but that's ok), falls asleep easily but wakes anywhere from 5 - 10 times a night within an 11 hour sleep time usually closer to 10. I'm exhausted and he's bad tempered. His sleep improved massively with a steroid burst (so feel it could be PANDAS related) but was thinking of trying melatonin or valerian but not sure of their safety in a child so young... or dosing for that matter. Any ideas/opinions? thanks....

We use the florastor to compete with the bad yeast. the pharmax (hopefully) replenishes the good bacteria but the sacchoromyces boulardii actually competes (I guess for food/space etc) with the bad yeast and isn't affected by the abx. Our pharmacist guy said if he had to take just one of the two, he'd take the florastor (s. boulardii). You can get other brands of it but I go with the one he sells and recommends and so far we seem to be doing ok. We take about .5 to 1 tsp of probiotics and 1 capsule of florastor per day, sometimes more sometimes less if we forget. Our dd is only on 600mg azith per week.

Look through the pinned threads "helpful info for PANDAS" at the top of the forum. Nos. 2 -4 are especially helpful for you as they discuss titers and how they can be negative and it still be PANDAS

I said sachh. b. fights the bad yeast, I should have said it competes with it ....

can't help with what the problem is.. but if it is yeast you should give sacchoromyces boulardii as well as probiotics... it's a good yeast that fights the bad. Our dd is on proph abx and it really helps her. we use a product called florastor... expensive but it works and the abx don't affect it as it's a yeast. give it in addition to the usual probiotics. We also use a probiotic called Pharmax HLC, our pharmacist , who I really rate, reckons it is the only one he would recommend. It is human strain probiotics not animal strain and thus, supposedly, better as it survives the journey to the lower gut better. Again, it's expensive but that combined with the florastor really seems to do the trick for us....

Shame there hasn't been proved some definite link with the strep hyaluronidase 'cos we could call it Streptococcus Hyaluronidase Induced Traumatising Encephalopathy.... shortened to S***E .. I haven't even hit the port yet but that ancronym certainly fits what we feel we've been through :-) (hope this doesn't offend anyone)......

Hello I also hate the PANDAS acronym and am in favour of something like SINS but wondered if it would be better if the acronym didn't already stand for something else. SINS, I imagine is very evocative for some people, as is PANDAS but not sure if an acronym that means something will detract from the disorder in some way or be bringing "baggage" to the table. Dunno?.... I like the idea of waiting for the alcohol to kick in for some inventive ideas :-) Danuta.

Our dd went 7 months totally symptom free, then got PANDAS symptoms after a flu-like illness (that looked just like H1N1). Also your description of your son as a toddler fits our 2 year old ds whom we believe to be PANDAS, to a tee.. the highly spirited :-) very physical but sensitive to noise etc. I personally believe that the vast majority of PANDAS kids don't have co-morbid conditions, it's all PANDAS. I think these kids get it way earlier than is commonly thought and that these early, unseen episodes can be milder but "inform" the child's personality. Our dd6's 1st noticed episode was at 4 nearly 5 but with hindsight there was stuff there as early as 2/3. Our son would have gone under the radar, so far, if it hadn't been for his sister's dx.

Hello We did have a good response to amox in our dd's 1st episode. She had a massive reduction in symptoms (down to about 30% of where she'd been) in 14 days BUT knowing what I know now from reading on here, I wouldn't trust amox again I don't think. If you haven't had a swab done, that's what you need with a follow up swab sometime later if the 1st culture is positive. The amox alone could work but I think many have found they need something stronger. hope this helps...

If it were me, I wouldn't be going either. I know we can't put our kids in a bubble they got to go to school etc but I wouldn't want to walk into a situation with known strep. I know the 24 hour rule thing but hey, we all know from personal experience or from the experience of others on this board that abx aren't always as effective as drs say they are. I'd be seriously thinking twice about it... but that's me, not a germaphobe in general but scared of strep.......

Hello Our dd had been doing really well for 7 months or so with no symptoms on abx proph alone. We had a flu-like illness and the PANDAS started to show. We did full course abx with no improvement. We did a 5 day steroid burst and within 1 day the symptoms had almost disappeared. By the end of the burst she was symptom free and still is, at 9 days post burst. We spoke to Dr T on the phone and he said if symptoms came back we could repeat the burst in a month or so, still doing a short burst but also adding a short taper. I believe he called it a medroll pack. It would seem that abx and bursts can indeed work for some children and that in his opinion a few short steroid bursts over the year are ok (assuming your child reacts ok to the steroids).

Our dd wasn't in an exacerbation and was symptom free at the time of the draw but she came back at high mid PANDAS range at 165%. I think it depends on the child though. Dr Cunnningham's office originally advised us to wait until she had an exacerbation but as we felt we could afford to do 2 draws and wanted to see what her baseline number s looked like, we chose to do one out of an exacerbation.

Hello Our dd has never had a positive group A strep test, never had titers that were elevated but has responded well to abx and just (this last couple of weeks) responded really well to a 5 day steroid burst (although as others have said if TS is a possibility you have to be cautious in using steroids). We also did the Cunningham tests and she came back in the high middle PANDAS range for CaMK. If we had ruled out PANDAS 'cos of her test results we'd be in a very different, unhappy place now. She did test positive for beta hemolytic not group A strep during an exacerbation and family members have been positive for group B strep in the throat during other exacerbations she has had... so maybe these can trigger for her or maybe it's just chance. Our local children's hospital thought that those as triggers was rubbish (along with treating me as though I had Munchhausen by proxy, but heh...) but thankfully our ped tried her with the abx. If it were me, I'd stick with it, ignore the ped, find another dr if you can and keep going until YOU are happy ruling it out or ruling it in... good luck...

Hello I read a study (will try to find it later and post it) that showed, using rats, that a trauma to the head can lead to failure in the integrity of the blood brain barrier. I only read the abstract so not sure how severe the trauma would have to be but if stuff were already circulating in the blood stream (autoantibodies etc) it could potentially allow it access to the brain. I didn't really want to think about it too much. My kids are always baging something, our son all the time it seems.....

Very many I believe.... I know I've posted this before but I can't get over what my mother in law said when our dd 1st had PANDAS and I asked if she had seen it in family members. She said no to the family but (she was an elementary scool teacher and principal for 20+years) each year her school's intake was 28 or so kids (small school in England) and out of that group they would have 2 kids a year without fail that would develop sudden onset fear of contamination and handwashing and sometimes ADHD type behaviours. It would last 6 months or so, be put down to family stressors etc and would resolve. Sometimes the ADHD behaviours remained, usually in the boys. This is far from rare in my opinion.

Hello With 1 minor flare and 1 major episode our dd got a very itchy bottom. With the flare there was nothing to see but with the full blown episode it was round/reddish plaques rather than spots about 2-3 millimetres across. I have since found info on guttate psoriasis and I believe it was that. It comes on after a strep infection but couldn't check with a derm 'cos it had resolved by then..... not sure it sounds the same as what your child is experiencing though....