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hi - could it also be a form of tic? like echolalia or echopraxia (copying words or movements)... don't know if this would apply though if it were only in certain situations? just a thought.....

I had heard that the liquid was really difficult for kids to take because of the taste. My dd is good but has her limits, she almost refused one of the cephalosporins last year 'cos of taste and named it "antiblurrghotic" I was worried about the cleocin (it's 15ml, 3 times a day) and when I smelt it at the pharmacists it did indeed smell like a mix of hospital cleaners and cat diarrhea.. nice. I stocked up on flavourful sweets and drinks to coax her with but when she had it this afternoon she said "oh it's not bad, quite nice actaully, like cherry" - hooray! At least I won't have to fight that battle. So it smells foul but, according to my dd, tastes ok.

Hi - we didn't get an elevated c3d.. in fact all our tests come back within normal, with some notable exceptions.. the CamK, and earlier GM1 lysoganglioside and just this week, strep in the gut. Other than those we are firmly within normal for everythign else and we seem to have tested EVERYTHING else.....

hi - not to sound crazy but could you or your dh or other ds have strep? could being cooped up in super close contact in the car with you for 6 hours have caused a flare? some PANDAS kids react to strep in others , they don't even need to get the full blown infection..... almost like kids who react to peanuts in the environment and don't even need to eat them.. just a thought.. perhaps you have a strep carrier in the family

thanks folks.. my dd takes about 20bn or so of pharmax probiotics and 1 capsule of florastor per day. I was going to up her to 30-40 bn and 2 capsules and a load of kefir if I can get it in her :-) She's never had any yeast issues to date with proph zith and a few treatment courses but the clindamycin got me more worried.. ok, I will stop panicing.. I had a friend who developed ulcerative colitis and had to had her bowel removed at 23 and an aunt who had Crohn's so I may be a little easy to freak thanks again

Hi - our ped has prescribed cleocin for our dd6 who is just coming out of a mild flare and whose recent stool sample came back positive for strep. Not sure what type, we just got the info over the phone today. A little knowledge is a dangerous thing.. having re googled clindamycin and reminded myself of the c.diff issue and (rarely fatal) colitis that can ensue.. I've now terrified myself and am sweating starting the clindamycin. I'm looking for some platitudes here please could people relay some of their experinces with clindamycin (some nice stories of great benefit and no c.diff or colitis would be good)..... thanks

Sorry.. I'm obviously too techincally challenged.. I tried again but got server error aiain.. hopefully it went thru....

Hi - I did it but got a server error and the page had been wiped .. so not sure if it went or not.. did anyone else get the same "server error" message?

Hi - We don't have any experience with Dr Reichler but we do see Dr Cynthia Keller at Redmond Pediatrics. She has very quickly got up to speed on PANDAS, is a believer and truly understands the impact this disorder has on both the child and family. I recommended her on Dr Trifiletti's site and he also agreed that she was a very knowledgable doctor. She has, to my knowledge, treated with abx, steroids and IVIG at high doses. She is willing to listen, learn and think outside the box. We are with our usual ped at the same practice for all things except PANDAS. She sees both my dd6 and ds2 for PANDAS. If you're interested the number there is 425 881 5437. She isn't accepting new normal patients but is, I believe, still seeing new PANDAS kids. good luck

Oh yeh... thank god for the internet! I'm grateful for google, mommy instinct/tenacity and our ped's office - in that order. Without the internet, I truly believe, we'd be in psych drug ######.....

Yeh - I couldn't get passed the intro credits 'cos I worried it would be exploitative and (thus) painful to watch.. too close to home .. and I'm ashamed to say, I am somewhat of a reality tv 'ho - don't mind watching other people's troubles.. I might need to re-examine my reality tv habits. do those who have seen it feel it exploits the participants or show them and the disorder in an empathtic light?

cool... thank you

Sorry for being dumb but quick question - if my mother in law and sister in law want me to vote for them 'cos they are luddites and don't know how/haven't got access to a pc.. can I vote for them or is that a no-no now? thanks...

Hi - for those using curcumin for inflammation in their children, can you tell me how much you are using and which brands? thanks....

thanks... :-)

Hi - do you mind me asking how long it lasted.. was it just r-eadjustment following being knocked out cold or a flare in symptoms?

Hi - I was wondering if any parents have seen flares in PANDAS symptoms following general anesthesia? I have read a few papers re GA and the effect on the vasculature potentially affecting the integrity of the blood brain barrier.. any ideas? Thanks...

thank you

SF Mom - could you remind us of your nutritionist's name and contact info/website.. thanks :-)

Thanks for the replies.. we're half way thru doing a Diagnos-techs poo sample for both kids, so may get some answers on strep in the gut. Ds also just came back positive for candida in the throat, so that too could be an issue for dd. If we don't see a satisfactroy resolution soon, we may well try the bentonite clay, so thanks for that suggestion. Glad it seems to be working so well for your son, MomWith.. I'm off to google it now

Hi - for those parents whose children get stomach issues when in an exacerbation.... do you think the stomach problems are due to the infection that is causing the exacerbation or do any of you feel that the problems are part of the PANDAS symptoms? Our dd6 is in a mild flare at the moment and having intermittent, lowish level stomach pains, mild nausea and a few more BMs a day (say 2-4 instead of 1). It is, sometimes, waking her at night.. she goes poo and the pain and nausea subside. She doesn't want to go to school some days 'cos she's worried she'll have to poo there. I was told both by my MIL who was an elementary school teacher and by nursse at the drs that loads of kids won't poo at school so I'm not too worried about that bit.... I just wondered if a flare can cause enuresis could it also cause increased bowel motility and consequently some pain or nausea? How hard should I be looking for a cause of the stomach problems as it's been going for 3 weeks now and our usual ped, not our PANDAS ped, is not worried and says it's prob just viral? thanks for any ideas?

We have the same situation in our house that varies depending on where both kids are with PANDAS symptoms. Our dd6 was the kind of child you smugly took to sophisticated restaurants and she would choose complex flavoured meals while kids around us would cry for fries.. no longer! The karma police really got me back for my smugness. our dd is now super picky and does the exact same thing as yours.. bring me something, anything but then won't eat it. Our ds just doesn't seem to eat for days or weeks.. just picks and then will suddenly eat again but with a limited range of foods. Having said that he is increasing his range at the moment. I even did the list thing with my dd which sort of worked for a while... I think this restrictive eating is very PANDAS. When dd is symptom free her range of foods will come back, although she is no longer as adventurous as she once was but maybe some of that is just age.. dunno. Don't beat yourself up, I don't believe it's bad parenting, just another part of this illness...

Hi - I can't find it now... (will try and find and post) but... Some recent studies postulated that the amyloid plaques that cause the trouble in AD, may actually start out as protective rather than be an abberant immune response. They believe they may develop as a response to increased infection within the brain. Could this increased infection rate within the CNS be as a result of a faulty BBB (cause by?) that benefits from anti inflammatories or does the BBB have less integrity purely as a result of increased sytemic inflammation.. ?

Hi - Yeh , it was Dr Torgeson that Dr keller intended for us to see but we never even got past apponitments. She didn't recommend Dr B to us but I had heard he was very good and pro PANDAS.. and even though it was via tel he was very thorough. So far my dd's blood work all looks good.. a few lowish numbers but according to the tests she's a super healthy child that has never had anything!! Go figure.. Luckily, we've only had both kids in a mild flare at the same time... so far. In fact only our dd has had the really off the wall epsiodes so far, our ds seems more low level and chronic and also presents differently to his sister. Seeing both of them and their presentations is giving me a feel for just how differently this can present in different kids. With hindsight, our dd probably started around 3 and our ds at 7 months I believe, at the same time as his sister's first recognised episode. Some believe there is a very strong genetic link as in Rheumatic Fever, whereas others (see SFMom's posts about her partially genetically related kids and others at a playdate all getting sick with post strep sequelae) think it is a particularly virulant strain of strep. Did you get any relief in symptoms with the steroids? or abx? We are lucky with dd in that although she is more acute than her brother, she fully remits between epsiodes. It's a bit early to tell for our ds but I think he is going to be a more chronic case. He doesn't seem to get back to base line so well. Have you been dealing with this for a long time? Do you go back to what you consider a symptom free baseline? Feel free to pm me if you want to chat on the phone.. we could compare drs notes

Which dr are you trying to see... we never even got passed the door 'cos they seemed to balk at the pandas dx.. maybe things are changing there. We also had a bad experience with infectious diseases there.. dr b was good but out of pocket for us and over the phone but seems to really know his immuno stuff and was happy to talk and discuss our concerns and suggestions.. how old is your son? he certainly sounds pandas or pandas like. we have a dd6 and ds2 both pand(a?). we haven't found the original trigger yet but they both now trigger to various illnesses and my dd is a classic presentation and ds becoming more that way good luck in getting a good immuno...