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Yeh, we noticed an improvement within the 1st day for our dd... glad it's helping him...

I've even wondered recently if the research that says adhd kids watch too much telly has got things the right way round..... Our dd6watched no tv until she was 3 plus but our ds2 seems to watch more than he should... I know that I use it as a means for some down time for him (and probably more so for me) as he can be, at times (post illness, we feel) VERY lively, wilful etc... Does too much tv make kids hyper or do exhausted parents turn to too much tv??? dcmom.. can you borrow a DS off a friend see if it works and maybe if it does buy one and keep it as a treat for needy times?

I ditto the tv comment from dcmom.. we used the tv mercilessly during 1 of our dd's episodes. Not what you feel good about doing but my dd6 said to me that it helped her stop thinking.. she had lots of intrusive thoughts and was very motor hyper. Tv helped keep it all much calmer. We had days where it felt that was all she did but better that than constant intrusive thoughts or manic racing around. We have a number of things that are PANDAS barometers for us and tv seems to be one of them.. if she wants to up her watching I keep a look out for symptoms as I know she uses it and her DS handheld as a means of keeping herself occupied when the intrusive thoughts rear their head.

Hello Before we were aware of her PANDAS and way before her 1st "exacerbation" our dd had the sock thing and then on the back of that we had "the naked except her diaper thing" at home.. it was fun and quirky at the time as she was only 3... little did we know. I keep saying she is symptom free... but she is still somewhat fussy over clothes. The only battle I ever seemed to win was on socks... not at the worst times but all other times I could get her to wear socks if I bought the ones for diabetic kids.. they're seemless. Therawear sells them. So do some shoe shops. I also found pjs that look like real clothes could work 'cos they're so soft and easy to wear... Sorry I can't offer more... can I just say, though, how heartening it is to read your history of having PANDAS and feeling like there is a bright future for these kids.. it always felt like a bit of an abyss with no adult stories... Thanks.....

Hello We had a lot of motor hyperactivity with our 1st episode. I would physically stop her and redirect her to the tv.. not what you'd normally do but it was the only thing that would get her attention. Longer I let her race round, the more hyper she'd get. We watched a lot of tv for a while there....

Hello Our dd6 (65lbs) was dx PANDAS 2 yrs ago. She has had 2 major and some minor episodes that included ocd/tics/chorieform movements and a horde of behavioral stuff. After a flu-like illness at thanksgiving she exhibited ocd symptoms after being symptom free for months. We watched for a few days and by about 4-5 days in she started to take a nosedive - increased ocd/hyper/more difficult to discipline. We did a 5 day steroid burst at 60mg per day. Within 1 day we were down to 3-4 ocd type worries per day. The day following the end of the burst she was symptomless again. We are now 4 weeks post burst and have seen 1 worry per day creep back in during the last week at bedtime. Dr T told me that we could repeat the burst again if needed and that he felt a few bursts a year would be no problem. He suggested we use a medroll pack (sp) next time. Similar to that used for MS. I believe its 5 days and 2 days quick taper. Symptoms from steroids were a bad temper, but not huge, for the 5 days on and then an increase in appetite the following week, no sleep disturbance thankfully. I also would do it again at the drop of a hat and my dd is super pleased as she feels it is her safety net. Thanks...

Hello I've read and Dr T also mentioned that a rash while on amox, if not allergy, is often a toxic rash and can be because the child has another infection at the same time.. usually epstein barr virus also known as mononucleosis.

EAmom - i did do a post on this but.. was wondering if you happen to know why streptozyme isn't routinely run. I know there are questions over its accuracy but the fact that it covers 3 additional exoenzymes and that some (older) papers suggest it is useful for those twho tend not to show a rise in ASO despite documented infection.. ?? thanks

Dr T suggested that we get everybody's titers run in our family just to be sure there's no simmering infection in anyone. Not paranoia in my mind....

Hello Our dd6 (60lbs) is on 300mg zith twice a week for prophylaxis (total 600mg). She has been on it since Nov 2008 with treatment courses of zith and other antibiotics prior to that and a number of treatment courses of zith since Nov 2008. We used zith originally 'cos she had a reaction to amoxicillin which we thought may be allergy but later turned out to be a toxic reaction. I also like the ease of not having to administer it every day and the long half life of zith, so if we are late on a dose it isn't as much an issue as it would be with penicillin. Our ped prescribed and we'll use it indefinitely.... Our ds2 (35lbs) is also on zith 160mg twice a week (total 320mg). He is allergic to amoxicillin. Again our ped prescribed and we will use it for now until we can get a clearer picture of whether he is definitely PANDAS or not. Our dd has a PANDAS diagnosis and it looks likely that he may be PANDAS too.

LOL... sorry, laugh out loud :-)

Suzan.. hello... yeh I read that paper last night but most of it went straight out of that hole in the back of my head where my brain used to be prior to sleep deprivation :-) but certainly got the sense from it that maybe this test is important for those with low titers.....although another thing I read said that if you add in the antiDNaseB test the you increase sensitivity enough to not need streptozyme but that didn't make sense to me in that the streptozyme test looks for 3 totally different exoenzymes.....?

Faith.. hello... if I understand it right ASO and antiDNaseB are in the streptozyme test, as well as three others. You don't get individual results for them, the streptozyme test just shows if 1 or more are present but not which ones. I just wondered why that test or all of the others, individually, aren't done 'cos our dd came back as elevated on the streptozyme test but not ASO or antidnaseB which indicated to me that she had antibodies to one of the other three types of exoenzyme. I don't get hung up on titers but thought it may be extra ammunition for parents if more exoenzymes were checked. Perhaps some kids make them to some but not others.. I just wondered why the focus seems to be ASO and antiDNaseB?

Hello Apologies if this is a dumb question.... If I'm understanding it right the streptozyme test looks for 5 antibodies to strep exoenzymes that includes ASO, antiDNase B, anti-hyaluronidase,(AH), anti-nicotinamide adenine nucleotidase, (ANAD), and anti-streptokinase, (ASK). Why is it when drs are checkign ASO and AntiDNase B they don't run the streptozyme routinely or if they do nut run that amalgamated test, why are they not running all the individual antibody tests for those included in the streptozyme test? It's just that last year our dd came back negative (repeatedly) for ASO and AntiDnaseB but elevated for IgM streptozyme...... Thanks for any ideas...

I also believe that failure of BBB integrity is central to PANDAS exacerbations, certainly for our dd but wonder if in the case of t&a and dental procedures the exacerbations are more likely due to release of strep or other pro inflammatory agents (bacteria/viruses) into the bloodstream.....

Re-reading this, I think dcmom and Melanie are right too. We had an awful appointment with a non believing Infectious Diseases Dr. It was slap bang in the middle of a bad exacerbation. It was a waste of time and had me in tears that night. They are both right, you don't have the time or energy to waste on non believers if you can make it to a PANDAS dr if at all possible.....

Hi.. you want to go to the top of the PANDAS forum, and look at the pinned section.. "helpful threads".. many of the posts contain stuff for doubting drs.. the 3rd post will be particularly usual as it contains info on ASO and AntiDNaseB and why they can be low. There is also a paper somewhere .. may be in that pinned section that looks at the failure rate of amox/penicillin for strep. Maybe someone else can ttell you whjer eyou can find that one. good luck...

Sorry, I also meant to say we have never had a positive group A test only 1 positive beta hemalytic not group A and never had positive ASO or antiDNase B titers, only an elevated IgM streptozyme. I still feel we are clinically classic PANDAS with high cunningham and good response to abx during some episodes and good response to steroids.....

Hello For us exacerbations come on fairly fast from a baseline of no symptoms .. we have maybe a couple of days with some OCD (sometimes tics but not with the most recent exacerbations) then the labilty/combative/hyper stuff comes in and then it really ramps up. For us we have always gone back to a baseline of being symptom free, with the longest exacerbation lasting 5 months or so, although for the last month or so of that one only we in the family could see the symptoms. Up unti this most recent exacerbation we have only used abx. The longest exacerbation our dd ever had didn't appear to respond to abx. Time seemed to be the only cure for that one. 5 weeks or so ago, we started with an exacerbation. ! week in we did a 5 day steroid burst. We saw instant improvement and by day 5 all symptoms had gone. We are 3 weeks post burst and seeing really mild stuff creep in at bedtime. If it ramps up again, Dr T said it is ok to do another burst. Each episode has been slightly different for us, different symptoms, slightly different start and different length of episode. If I understood what Dr. T said to me during a phone consult, he feels that each child responds to differing levels of treatment and remits more or less quickly and to differing extents depending on how long they have battled this untreated and just how ramped up their immune system is. If you were lucky to catch the disease early on in its course (and the episode too, I presume) then lower levels of treatment work and treatment works quicker than if the disease has been raging for a while. You can calm it all back down more quickly if the immune system has less calming to do.... Apologies to Dr T if I got that all wrong...

Vomiting can be a sign of strep (along with stomach ache and headaches) and for us it's a real red flag..also see lindamom's post... vomiting 4-5 times and acting sick, lethargic not wanting to do much.. following day they had a positive strep test. This is just how our dd is often just before we see a rise in symptoms.

For us, when I think vomiting and tummy pain I think strep. Could the T&A have released strep into her system that could be breaking through the abx? Dunno... just a thought. Could you add in another abx for a bit, as well as the zith.... say clindamycin.

Thanks for the responses.. unfortunately this immuno is good according to our ped but not a PANDAS believer but hopefully he'll do everything we want. If not I'll try and do a phone consult with Dr. Boboulis. Thanks again...

Hello You may have to hunt for it, certainly you can order on line, but I really like Phatmax HLC acidophilus/bifidus. It is a human strain probiotic with fructo oligosacharide with a peachy flavour. Comes in a powder that my two (6 and 2) happily eat off a spoon 'cos it's sweet. I also open up capsules of Florastor and hide it underneath the probiotic. Florastor is sacchoromyces boulardii, a good yeast that competes with bad yeast in the gut. It tastes like smelly cheese but as long as I hide it under the nice probiotic both my 2 will eat it. My dd and now ds are both on proph levels of zith and so far as long as we keep up those 2, we have no problems.

Hello. We're off to see an immunologist and want to know what people think we should have included. Both our dd6 and ds2 are seeing the dr. I only want to do blood draws once if possible 'cos our son is little, so want to have as comprehensive a testing list as possible now. Any ideas on what this comprehensive testing list should include? Thanks....

My bad, forget the link.... http://www.timesonline.co.uk/tol/life_and_...icle6825457.ece