smartyjones

isn't that the same theory that many prescribe to about lyme -- that the bacteria itself changes shape/form to elude destruction. when you've got some time - right! -- you may want to look up "pleomorphism". it's that theory that there can be many different forms of a bacteria, virus, etc -- some being harmful, others not, and the bacteria itself "downgrades" or "upgrades" due to either changes in other bacteria, etc or changes in the environment. usually with it, is that the terrain determines what it allows to survive. i believe it was first proposed by Bechamp -- but Pasteur's theories of the microbe were more popular (although, he did recant before his death -- yes? chemar?) Rife, i believe of the Rife machine people discuss with lyme, was also involved at this time. we were previously using pleo sanum products which are based on this theory. we are no longer b/c we switched to a different dr who uses other products, but still sort of along this theory. i think some theories in this line of thinking are seen as kind of out there; where the most commonly accepted is that an organism (maybe not correct word) can shed it's cell wall and become harder to eradicate.

MMWG -- that is the last thing you need! i was there a while ago with me thinking i wanted to go the route with the ped who was prescribing a 30 day course of abx (which actually brought about 100% remission - although short-lived) and the ND who was wanting to not go with the abx, but just work on gut issues. it was very stressful. i remember the day of me chain-drinking coffee mochas and bouncing back and forth between them. you may want to try to find an integrative MD -- they can certainly vary but are usually Medical Doctors who take a more naturopathic path than an average MD. good luck.

susan -- your girls still tested with IGG antibodies to wheat and gluten although eating gluten-free?

so very, very true, tenacity!

hi isabel. i'd say about 3 months into pandas behaviors -- when still trying to figure everything out -- we went to a naturopathic dr who did IGG blood testing on ds. he came back extremely reactive to all dairy, most grains, eggs, peanuts, some other random things. the ND was kind of freaked out -- she runs these test often and was not really used to seeing such an extreme result. we immediately took him off all items. 1.5 years later, he still basically is -- we've allowed some french fries at restaurants during the summer, which are gluten free but are fried with other items so pick up gluten off of that. and he's begun eating yogurt out of a tube which was one of the only things he'd eat when we were having extreme contamination fears with no eating in July. at the time of the test, we were so searching for answers and ready to try anything. a few months after that, i left that ND b/c i didn't think she was giving enough weight to the strep infection -- she thought he could be celiac and even if not, the food allergies were enough to screw up his system and allow him to not be able to kick the strep. i thought the strep was more important and more the root. . . although i do believe many people see good evidence in their children of food restrictions making a difference, we have not. he has had good times and exacerbations while eating GF/CF. at present, i leave him on this diet b/c i am trying to stress his immune system as little as possible, but for actual definitive results, i can't testify to any. it just makes sense to me to not allow his screwy immune system ot make antibodies to food if it doesn't have to. although a MD allergist, did tell me, "this test shows he's making IGG antibodies to these foods, but so what. . . " i do believe some with lyme see good results with GF -- there was an interesting article some time ago on here -- maybe posted by denmarkpandas ? -- that some believe strep may bind with an enzyme in the gut that is instrumental in digesting gluten and dairy. i am inclined to think the infections are more the issue -- the infections start everything, then there may be issues with particular foods, etc -- thus, clear the infection and you can clear the other issues. that said, while clearing the infections, it's probably good practice to steer clear of anything that may be exacerbating or adding to any trouble. i will disclaim that i seem to be more and more entrenched in the idea that infections are at the root of so many ills. in theory, i do beleive that GF/CF is probably the most healthy way to eat, pretty much for everyone, and if your kids are into fruits and veggies, they would be so very healthy for it. even with my kids, who hate fruits and veggies, it's not so hard, once you're used to it -- it's just so very different from how most people eat. and, i don't buy too many packaged GF items b/c my theory is, 'if you can't eat grapes or strawberries, i'm not buying you a $6 bagel!" ds does eat more meat than i would like him to, but i figure i can't limit everything. please keep us posted on what you decide and your results.

Cindy -- I would suggest you call the office or e-mail the neurobehaviorist you're talking about and ask their involvement if it is a medical issue if you are keeping that appt. i think i know who you're talking about. i can't think of the name now but would know it if i heard it. a friend of mine suggested him to me b/c she is familiar with him b/c she has an adopted boy from Russia also. is he in the Virginia area? a while ago now, about 2 years, when my ds presented symptoms, 2 people suggested a dr similar to what you describe. i e-mailed and he said the treatment he does is very different -- not for medical issues at all, totally different track along the lines of working with the neural pathways that develop when you live in difficult situations -- so he said himself, he was not the right person for us. this was when we were first investigating pandas. ds had sudden onset, high titers and positive throat culture, so we knew something was up medically. good luck!

arial -- so interesting! my ds6 had 'sudden onset' at age 4.5 with behaviors that certainly were disruptive, new and needed attention. however, previously, he occasionally had what we thought was normal 2, 3, and 4 year old stuff that was totally age-appropriate. now, i have a different view on it. intense potty phobia was the one big issue -- no one (relatives, friends, drs) wanted to hear me that it was not normal potty stuff. 3 months prior to onset, he had an episode of cognitive inflexibility on a vacation a few days after vomiting. we thought it was vacation and altitude related. somewhere around age 2.5, he had two instances of intense separation anxiety and cognitive inflexibilty. at the time, ALL this was seen by everyone to be 'normal' toddler stuff -- even by me. now, i really belief the potty is related and that began about a year and 3 months prior to onset -- but of course, when we began potty training. at the time, the dr even thought his throat 'looked like strep' but he was neg on rapid and culture. i think your son being part of this study is very exciting b/c the implications could be astounding if/when it becomes common knowledge to tie behavior to infections! kudos to you for participating in it! good luck with your son's treatment.

sorry - i don't have an answer for you but find it a very interesting concept -- your son could show antibodies but not have an infection -- like he got a vaccine from you but not the lyme bacteria? interesting! i did ask our integrative MD an impossible question of if there are people who are bitten by an infected tick but do not develop lyme disease. of course, there's no way to know but not everyone who is exposed to H1N1, strep, many other infections etc develop a problem and infection from it. could lyme be the same?

isabel -- so what does all this mean for the PEX? are you going ahead as scheduled or changing plans? i know --- it is rough for them with the dr's visits, medicines, etc. ds is doing much better after herx reaction in july that lasted 6-8 weeks with multiple dr's appts -- had an appt with integrative dr on monday, yearly check-up with ped on wed -- waiting for dr on wed he said, "the drs think i'm not okay but i'm really just fine." i hopeful you're figuring it all out!

just when you said upon waking . . . when ds8, non-pandas, had strep that then ds6 - 22 mths at the time - got -- which may have been what started the whole ball rolling -- he had face whitehead pimples like teenage acne when waking up and then it would dissapate through the day. the 2nd day, by the time we got to the dr around noon, it was really down, almost gone - could only see if looking for it. he had active strep infection. those pimples were his only symptom. pandas son threw up the next morning -- his only symptom. a friend had some explanation that she thought his immune system was trying to clear it while he was sleeping and then when awake it would kind of integrate back into his body. i can't really remember but i think something makes sense that while at rest, your body could be trying to do something and that's why there's sypmtoms in the morning.

so that means that your body is working as it should -- your immune system is protecting you from a nearby infection -- you don't show signs of infection b/c your body is correctly functioning? is that right?

these talks about multiplication make me wonder . . . .ds6 (onset at 4.5) has not shown deterioration in math skills, although when looking over last years (kindergarten) writing, i see definitely pandas deterioration in the spring. he then had big problems with teacher b/c he refused to do much, i now think it's b/c most of it involved writing and he'd avoid anything that would make him write. is this just how pandas has affected him, or was he too young to have this affliction? is the issue with math skills one of some way of abstract concept processing? was he hit at a young age when he didn't really have abstract thinking anyway so no one expected him to think abstractly and so therefore, we don't see a problem? ds8 (non-pandas, although does show slight symptoms only a pandas mom would see) is an extrememly concrete person. if you ask him "8 times 4", he gets a bewildered, lost look - panicked with multiplication. if you ask him "what is 8 taken 4 times?", he will come up with it quickly just adding 8+8+8+8. this is partly b/c he is so concrete by nature and partly b/c he's gone to montessori school that emphasizes concrete with a gradual move to abstract. we're in the process of moving, so i am doing homeschool right now to avoid too many transitions. i just made a montessori multiplication checkerboard that allows a child to multiply something like "3249 x 31" by moving beads and reducing it to addition. my nephew(11) ( i believe undiagnosed pandas) struggled with multiplication and only recently learned it b/c he learned division first and then multiplication made sense to him.

our experiences are very similar to OCDmom. however, my son is younger, now 6 -- school anxiety last 2 years, age 4.5 in preschool and 5 in kindergarten. the first year, with onset of pandas, was out of the blue. he loved school, had many friends -- he just started refusing. one of his major onset behaviors. first year, he missed the last 5 weeks of school in may. second year, seemed tied to some event -- getting in trouble; when he stayed for the whole day instead of being picked up 1/2 hr earlier. i believe it's all the same pandas mechanism that gets it in place, and then 'normal' anxiety weighs in also. at times of severe refusal, he would have gladly walked into a burning forest rather than go into the school building. i think it's important to understand the degree of terror that can be involved. not to accomodate it, just to understand for them, it is extrememly real. confounding that, the more you allow the staying home, the more that snowballs. it's a really tough situation. i believe the root is helped with abx or whatever treatment you are pursuing. we wrote a personal story based on the book Brave Ben about a boy who is fearful of everything. ds was 5 so that may not be helpful for you. but older son who was 7 at the time also enjoyed it. for my ds, during the second year, we made deals -- we'd allow one day and he had to go the next. this is very dangerous, however, he abided. for him, if he agrees, he'll usually follow through -- depending on where he is in an exacerbation -- not always easy to tell. once when he had an appt in the morning and then refused b/c arrival was 'different' we did steps as if overcoming phobia. that day -- we drove through the lot and didn't get out. he went fine the next day when back on schedule but we'd had devised that the next time arrrival was different, we'd go into the school but then leave. the 3rd time, he'd stay for the day. ds works well with these type of steps. our psych had suggested when doing shortened days, to make it late arrival and leave with the other kids rather than start on time and leave early. we never had to do that. i can't exactly remember the logic. i think it to not be too set out as different b/c you leave with everyone else. perhaps you can use the repeating technique from the Explosive Child to gain insight into what your child sees as the problem and then devise a plan from there. good luck!

parents -- sorry, i don't have a good post for you, and i don't know what other issues you are speaking of. i have done two tapers when i thought my son was doing really well. probably 95%ish. i won't make that mistake again. we are following a different path than most with an integrative MD and homeopathic meds. the first taper was scheduled. unfortunately, he also got some type of flu. (how do our kids seem to find all these perfect storms??) he spiraled down. he seemed to improve when we brought the med back but it was a long haul. the second was again scheduled and he appeared to be better. about 3 weeks in, he was spiraling and i brought him back to his previous level and he returned. i spoke with the dr about this at the next appt. he reply was to the effect of 'sometimes strep can be very hard to get rid of. perhaps we'll keep him on that higher level longer. if possible, i would suggest you try to find something that may have a strep killing effect as you do the taper of the omnicef. good luck.

p.mom -- how did you treat the EBV?

i will disclaim that i am not the most lyme literate person here but . . . my understanding is that the 'co' really refers to also carried by ticks. the co-infections are separate infections that can be carried and transmitted by the tick at the time of that bite or even by another tick at another bite. lyme is caused by borrelia spirochete bacteria; bartonella is a separate bacteria; babesia is a what, a virus? there are also parasites that can be transmitted by the ticks. so the co is really co to the tick, not the lyme disease. so, i believe most drs believe that if you are showing one bacteria known to be transmitted by a tick, you should check out if you could have also gotten other infections as well. with this thinking, you could have been bitten by a tick that carried one bacteria but not specifically borrellia and therefore, have only bartonella or babesia. not common, but possible. i believe most drs would assume you'd also have borrelia and therefore treat for lyme also. perhaps, and only my speculation, these infections have some type of parasitic relationship where they depend on each other and further each other's existence. . . ?. . .

does anyone have any insights for me? my son has some issues with cognitive inflexibilty, most likely 'just right' OCD without seeming ties to other trauma that may occur if something isn't right. . . just that it's not right and that's problematic in and of itself. so, tonight here's our scene. . . we're on vacation at a cabin at nana's....boys have been watching a show before bed --- we don't do that at home. so tonight after dinner i say, "you must cooperate with everything papa asks you to get ready for bed if you want to watch that show." a shower was on the agenda. he has had trouble with bathing in the past during exacerbation. this is not that, something different. so when it's time to shower, he refuses. "i'll do it second thing tomorrow morning." a common delay, although he does actually often follow through with that type of thing if he says it. so he's not cooperative, so it's to bed without show. not really a tantrum but not pleasant . so he's says the problem is that it will take too long to take a shower and they might not be able to watch the whole show. like a tantrum doesn't take up time?! we weren't on any time schedule, it was shower, then show, then bed. no one said anything about not finishing the show. when brother gets out of shower and ds is worried bro will get to watch without him, he decides to be cooperative. comes upstairs, takes shower. . . albeit not happily, but cooperatively. if you were watching these scenes from the outside -- like his teacher last year -- you'd likely think he's just being defiant b/c he wants his own way and is a brat. however, i believe it's deeper than that. and he doesn't actually get his way from behaving like that. obviously, if you're worried about time, the smart thing would be to cooperate, get through what you need to and go on to what you want. as i write this, it sounds more like 'normal' child stuff, but it's not, it's some OCD, cognitive thing. any hints and thoughts for me? thanks.

my kids use biotene toothpaste and have x-clear nasal spray, both with xylitol. last sept, we tried to do nose-spray each day after school but it didn't last as a routine too long, now we use it for stuffy/runny nose. i keep these as a 'can't hurt and may just help' attitude but i don't believe it does much for preventing strep, esp with kids who have obvious issues relating to strep.

i reallly don't want to jump into the arguments about causes.... just wondering if someone can explain. . . initially, swedo et al discovered pitand, yes? then saw clear patterns with strep and thus pandas, yes? so pandas gained more of a foothold than pitand. but it has always been a subset of pitand. is that correct? why couldn't it be that one has a subset and the larger? perhaps the other infections exist and we only become aware of them when the strep hits and gets out of control. for us -- ds had clear strep markers, aso 898 and + culture, 100% remission on correct abx, although horrible experience on azith initially -- possible herx, we'll never know for sure. then he relapsed after 30 days off abx. saw improvement when back on abx but not as dramatic. about 9 months later, i felt he wasn't healing as he should be and asked our dr about lyme. new integrative MD diagnosed multiple infections. before this, i was sure he was pandas, such clear strep markers. friend kept suggesting checking out lyme - june '09 completely neg western blot -- my attitude was, "thank you very much, my kid has strep issues." now, i believe he was not inaccurately diagnosed pandas, but incompletely diagnosed not as pitand. at the ocd conference, granted this is through my ears, which are pitand oriented. . . i believe all drs, with the exception of one, are working with and treating "pediatric autoimmune neurological disorder". only one do i believe to be treating "associated with strep". yes, strep may be the most common and/or the easiest to pinpoint. but i personally felt most of the drs had kind of left behind the "AS". due to my personal experience -- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else. going from memory, i believe the NIHM statement calls pandas "the most compelling" -- not the only, not the most common-- but the most compelling -- which i take to mean, the one with the most science backing it. medicine is always changing in what we know -- someone posted here once the history of childbirth and a famous quote from a leading dr at the time that they didn't need to wash hands before examining pregnant women even after autopsies b/c 'drs are gentlemen and gentlemen have clean hands." how utterly ridiculous we see that today! why is there so much controversy here over pandas vs. lyme vs. whatever else? why has it even become pandas rather than pitand?

thanks sfmom -- good info. elizabeth -- interesting. very similar here. we didn't find much herx with prior treatments aimed at detox. have had incredible herx with brain treatment. mellowing now and hopeful we're on a good path.

in naturopathic medicine there is a reaction similar to a herx called a 'healing crisis'. it is usually attributed to a revving up of the immune system due to the treatment and thus, the body healing kicks in and heals the infection or whatever. the symptoms one feels are the effects of the immune system. my son has been experiencing what i believe to be this reaction -- be it due to his own immune system or release of toxins or whatever -- due to an antiviral we introduced about 8 weeks ago. his integrative MD is certain this is what we are experiencing. sf mom told me a number of weeks ago -- 'you will know' when i asked about a herx. boy, was she right. in the past, i've wondered if we maybe we could be seeing some type of increase in symtpoms due to healing. now, it has at times been a CRISIS. however, it has been a cycling of behaviors. we've seen some things we've never seen -- intense contamination fears resulting in no food or drink intake. and some things with increased intensity --- such as deliberate punching. dh has been worried, but i've seen these behaivors come for a few days and then leave. in the couple of weeks, lasting a week, when eating issues were here, he had a varying fat lip. i was concerned it was an allergic reaction -- his breathing was always fine. DR saw it and said he was confident it was not troublesome and saw it as a good sign. i know it really sounds backwards when you are looking at your child with troublesome symptoms. ds had mouth sores and bumps when first presented with symptoms -- drs all said it was unrelated but i knew it had to be. during these weeks, he's had varying lip bumps and reddness and clearing. a herx is nothing i'd like to experience without a professional to consult and check out what's happening and advise, b/c for us it has at times been intense and troubling. however, i believe now he's pulling out of it and am hopeful we're on a good road. SFMOM -- what did you write recently about white blood cells and red blood cells and their times of regeneration? i can't seem to find it. thanx.

i can't open that link either. i had seen something at bed, bath and beyond that was like an open area the size of a large screw that slide down to a smaller area and then you lift up. so it encircles the tic and then you lift off straight. it was only a quick look and i didn't buy it b/c had to keep sons from destroying the store but it was something i wanted to go back to investigate.

kelly -- cetainly happy to hear your ds is doing well with the virus and no pandas symptoms. and i am hoping this would not be your situation. . . just wanted to share our experience. last fall, ds seemed to have a downspiral with a flu, then had seeming troublesome behaviors -- mostly at home, seemed good at school. unfortunately, this was also the time we tried to reduce meds. sometime in jan, he had a stomach bug and after was better with behaviors. i was laughing that he may have pooped out his pandas. however, this seemed to coincide with increasing troublesome behaviors at school. i know many metion that many kids have better behaiviors at school or at home. my ds also seems to be able to hold it together better in one place -- just not consistent with which one. so, for my son, what appeared to us as healing was in hindsight more of a switch in when and where the behaviors were occurring. it seems a bit different from what you're describing b/c your son was doing quite well before the bug, so i am not saying it's similar. . . but just wanted to mention. good luck and hopes for continued recovery for him.

grace - i'm sorry to hear and understand your fears. my older, non-pandas son has recently been afraid to go/be upstairs by himself. it's hard to decipher if you're just being paranoid - b/c i see so much in other kids that i believe is pandas-like behaviors -- and when you're being aware. i do think there is much evidence that this is very possibly a condition that has some sort of tie to run in families. i would suggest taking him to one of the drs that you trust that has been treating your other child. as far as the reassuring -- we've found the technique of repeating from the explosive child more helpful in dealing with tantrums and irrational fears than anything else. it can help you gain insight into what is the problem and why. also, it detaches you a bit so you are then involved with him but not invovled in the problem. you can use different inflections but just repeat what he has said. ex: he says he's afraid his brother will fall off the mountain; you say, "fall off the mountain?"; he says, "yes"; you say "really, fall off the mountain?". when appropriate, you can throw in a "why". sometimes, i repeat just a word or two of what he's said. it keeps things from escalating. sometimes, the more you reassure, the more they come up with objections. you'd have to see where it takes you, but try hard to not offer anything else but just his words back to him. for my son, it often makes him reevaluate and then he comes to the conclusion that what he is starting to get worked up about really doesn't make sense. other times, he's agreed back with me and then just drops it. other times, we've been able to find a solution. you'd logically think this would be very annoying but my son doesn't even seem to notice that i'm just repeating his words. he seems to think i'm being helpful. i believe it's b/c he isn't really thinking appropriately during this time, so can't really put it together that it is annoying. my mom's friend starting doing this with her husband, who can be difficult, and was very pleased with it. good luck.

gat's mom -- what's that? can you update us on your success? thanks.