smartyjones

family -- i don't know how much research etc. you've done on pandas . . . but, don't forget pandas is a subset of pitands -- pediatric infection triggered autoimmune neuropsych disorder. you're children may be displaying pandas like symptoms but may not have strep as the trigger -- perhaps it was the mold, or some other infection. or, it could have been strep, but you've never caught it on a strep test -- not done it at the right time or something. this is from the abstract of the article mentioned today. . . The immunologic culprit receiving the most interest has been GroupA Streptococcus (GAS) my opinion from being at the OCD conference and hearing the drs speak. . . strep has the most interest but it's not the only known pathogen to cause neuropsych issues. unfortunately, there are many more.

gat's mom -- my son is younger than yours so i don't really have such good advice. unfortunately, i've been very disappointed in the psychological/psychiatric help we have gotten -- really NOT gotten. i have found much help from the website anxietybc.com. they have some plans etc for separation anxiety. i do believe if there is an infectious cause, the real help is going to come with proper treatment, however, there are some good suggestions and plans to help cope while working on getting that healing. good luck.

just wanted to add our experience for you in collecting ancedotal stories. . . i wouldn't say it points to anything for your son and can't say i am for certain it was herxing for my son. he had positive rapid strep test at 22 months old. took azith, no problems. never retested to see if strep was actually gone. his only symptom was vomiting one time. ( his older bro was positive the day before, that's why we tested). he had previously had trouble with abx - amox and onmicef for ear infections -- only small rash and was switched quickly. but this time, no trouble with azith. fast forward 2.5 years, age 4 1/2, presented with wild pandas symptoms -- extreme separation anxiety, inappropriate behaviors. no overt tics, some very small things that now i see could have been tics. a few months to discover pandas, high titers, positive culture. dr put him on 5-day azith. horrible! all previous behaviors returned (we had been seeing naturopath, some things were getting better). extreme separation and social anxiety. so happy to be off that (early in my pitand education) about a month later, new dr put on keflex. all symtpoms resolved in about 3 days. unfortunately, relapsed after about 30 days off keflex. about a year later, he wasn't seeming to become completely healthy, although was doing 'okay' -- maybe 90% pre-pandas, we thought -- at home. in spring, found out school was not doing so well -- trouble 'bossing other kids' and with focus. investigated other infections and there were plenty -- including lyme. so --- could that early reaction to azith been a herx? i don't know. he does have pitand, he does have lyme, he did have a bad reaction to azith. so, what's the medical statement - ? - true, true and unrelated. would it be unrelated or related? i don't think we can know. another note -- his first western blot thru quest around the time of relapse when first off keflex was completely non-reactive.

tampicc -- my son was 4 1/2 at onset and when the behavorist suggested pandas b/c "what you're describing sounds like OCD, but he's awfully young" i had absolutely no idea that anything i was saying sounded like OCD. honestly, even with what i know of OCD today -- it still doesn't sound so much like it. for him, it was NOT contamination fears or intrusive thoughts. it was more behavioral stubborness and asperger-like stuff. i can see now (2 yrs later) how stubborness can be OCD -- for him, i think some may be and some may be sensory. i am very curious about the line between those two. we've now gotten to a point where he usually can say "there's no reason" and it usually does seem sensory, "there's a reason but i don't want to say" possibly/probably OCD, and "there's a reason that no one can ever, ever know" -- during intense herx-like reaction to an anti-viral resulting in textbook contamination non-eating fears that we'd never seen before. luckily, lasting only about a week. your descriptions similar to my son: your description of collecting, does sound like hoarding to me. my son has done this is short spurts with exacerbations. it's not a major thing for him, but he has done it. the semantics is a big thing for him. he says, "you mean . . .". one of the things i wonder about with 'just right ocd' vs. sensory -- for him, i don't think it's OCD, there's doesn't seem to be anything else attached to it. it kind of seems like he can process it better in his form. at onset, anyone drawing, writing, coloring just the exact way he wanted was big. one time had a big argument with me wanting me to color spiderman exactly the way he said. this caused problems in school with 'correcting' other kids. teacher couldn't get that he wasn't really 'bullying' others, so resulted in much frustration for her, no techniques for him. trouble with games is big. in exacerbation, rules and winning is troublesome. when healthy, he's a very enjoyable player. is actually a good gauge for us. so yes, to me, what you describe i believe to be pandas-related. are you just curious if these are pandas-related or are you having trouble dealing with the behaviors? if you are and you want, i have some good resources i've found to be very helpful

oh JAG - that comment makes me cry with its harsh sting of reality!! i see you say you're getting other infections checked out. . . my opinion is it could be both -- other infections could be troubling her immune system but what you SEE is from myco trouble.. . . perhaps she can't kick the myco or it is so troubling for her b/c the other infections exist but in more of a 'silent' existence. so you could be right -- myco is her achillies heel and what you see and other infections enable it to be so.

we did have CT for sinus -- when still beginning pandas journey. he had sudden onset, high titers and positive culture. useless ped perfunctorily threw him on 5-days azith just as CYA, with statement, "you'll find the behaviors and the strep are not related." he didn't seem to be having abnormal sinus trouble for a 4 1/2 year old in the winter -- just pandas behaviors. although, he did complain of an eye ache 6 months prior when i had a sinus infection. got a new ped, ordered sinus CT which showed all 6 cavities blocked. we used keflex b/c he had a terrible reaction to azith (could it have been lyme herx- ?; later got lyme diagnosis). all behaviors resolved w/i about 3 days of keflex. 2nd CT showed much improvement. he relapsed with behaviors after about 30 days off keflex. dr offered we could do 3rd CT to check but was confident we'd hit it hard and 2nd showed improvement -- so we didn't do a 3rd CT b/c of radiation and just assumed sinuses had cleared. could there still had been strep bacteria there? i think you'd have to keep doing CTs and i think drs think the abx will handle it and so don't expose to the radiation. it's so hard to determine if you've actually gotten the bacteria. i think there's been some mention of culturing sinuses on this forum but i think it's not done so often -- did your ENT discuss that as an option? a dr early on told me when first in practice, she ran all kinds of tests -- now she only tests what will change/guide her treatment decisions. did you discuss with ENT what differences the CT result will make in treatment?

i just found out you don't need a dentist to do the donating. operation gratitude, based in CA, will take the candy and sent it. check out http://www.opgratitu...page=individual, scroll down to halloween. my boys were excited. . .of course, their idea of a donated amount and mine are vastly different!

all that sugar, additives, etc isn't good for anyone, but certainly not pandas kids! last year, our dentist bought back halloween candy and then sent it to the troops. this year, they are not participating but i just found out anyone can send it to the organization, operation gratitude, based in CA and they send it. check out opgratitude.com and http://www.opgratitu...page=individual, scroll down to halloween candy. my boys are excited about this -- of course, their willing donation makes only a dent in their buckets. . . but i'll pull more out later. also keeps me from eating it!

i've always had trouble understanding this and now lean toward believing there can't really be a benign carrier state. a carrier state would indicate strep is part of your normal bacterial make-up and doesn't cause a problem for you -- yes? so therefore, you shouldn't produce antibodies against what would be a normal benign bacteria for your system, right? so therefore, if you have high titers, you are producing antibodies -- which would indicate that your body sees this bacteria as troublesome for you, right? it gets so confusing. i would think you could be a benign carrier if you culture strep bacteria yet have no symptoms and no rise in titers. i would think if you have no noticeable symptoms, yet your body is producing antibodies, it is a troublesome bacteria for you, but without noticeable symptoms. i guess the end-result is the same -- treatment with abx.

julia -- thanks for posting. i am very interested in dr. klinghardt so i'm so happy to hear info about your visit. please keep posting your experiences. following chemar's thoughts . . . just our experience -- my 8 year-old, non-pandas, 80 lb son -- sometimes has trouble falling asleep. we've had success with melatonin. i cut the 1 mg pill in half and he's OUT in 1/2 hour. so he's getting .5 mg. could they have meant .5 instead of 5?

last year our dentist took candy trade-ins for a penny a piece - i think with a limit of $5 or $10. i was surprised at how excited my kids were about that. i believe they then sent it to troops overseas.

night sweats and soles of feet hurting can be symptoms of tick borne illnesses. not saying that's what he has, but those are symptoms.

e

please do! i'll be so interested to hear, esp the live blood. are they looking at it with a darkfield microscope?

oh tantrums -- so, so sorry to hear this!! first, i think we (pandas moms) all tend to think too far into the future - as far as what we've seen in the past and trying to avoid it in the future -- however, i think in this situation, you need to take a deep breath and only deal with what is immediately in front of you. sorry - i can't remember your child's age. . . however, I found this upsetting when reading it. so i can't even really imagine a child, with issues with injuries,etc actually witnessing it. i'm happy to hear you have the school psych and think you should lean hard on her help and advice. ' i love the book explosive child's technique of repeating when dealing with inappropriate outbursts. however, it can also be beneficial when trying to find out info and to be a reassuring force without getting dragged into excessive reassuring . if/when he says something about it, rather than trying to reassure, etc, you can simply repeat what he's said letting him know you heard it and attempting to gauge where he's at w/o putting any thoughts he doesn't have about it. such as, he: "i was really scared i couldn't get off the bus", you "yes, i see, really scared". he "i am so mad you weren't with me and that happened. " you - "so mad!" he - "i know something bad will happen if you're not with me", you - "you know it!"(incredulous), how?", he - "becasue it did today." you - "yes, it did happened today". i find it such a helpful technique to be involved with my son without being dragged into the drama -- and there's plenty of good cause for this drama for your son. one of my son's biggest troubles was school phobia and refusal. last year, we did allow some missed days, after days off etc when out of the routine, with the agreement that he was staying home today and he had to go tomorrow. this is very dangerous, but it flowed. perhaps, you could explain that after something unexpected happens, routines (sleeping with you etc) can change for three days (or whatever) and then you have to get back on track. it's kind of dicey, though. i have recently found help from a book when labels don't fit with sensory issues. it explains the difference between "giving" to your child -- when you are in control, you are making decisions and you can decide to be lenient in helping your child display good behavior and "giving in" to your child -- when he is in control, you're at your wits end and he's in control b/c you don't have options. i think in this situation, you can "give" to him b/c it is quite traumatic. i think you just have to go day-by-day with the help of the school psych. Good luck!

what natural anti-infammatories are you using? thanks.

EAmom -- would you mind giving me more info or a link if you've previously discussed on what you described as the copying issue your daughter had? does this have a name? did she have other handwriting issues as well or mainly with copying? was it from a faraway board or directly from a paper in front of her? thanks!

i just bought a little toothbrush sanitizer at bed, bath and beyond. it's a little pod that clips over the toothbrush. it has "thymol compound" which is says is non-toxic. it's claims 99% proven to kill enterococcus faecalis, strep mutans and lacto caseii. says it's effective for 90 days. anyone know anything about this? it's about $5 for 2. i was thinking along the lines of may or may not help, but shouldn't hurt.

the other day, we were at the book store. my kids found a spot to look over their picks near the health section. i looked up and saw a book, Women and Autoimmune Disease, published 2004, Robert Lahita, MD, PhD, professor at Mount Sinai Medical School. as i flipped through, i was astonished to see chapter 7, "PANDAS, the Jekyll and Hyde Syndrome" -- an 8 page chapter. i don't think it's any new info for anyone here, some may find points of disagreement. . . but i thought a really good basic overview - with case study and simple explanation - to add to my list of articles to share with others when trying to explain. i think sometimes, we know so much and have been through so much, it's helpful to have references that can just lay out the simple facts, without being overwhelming to the reader. (school, family, etc).

wendy -- are you saying your dr thinks 2 years from the discovery and treatment for TBI . . . or 2 years including the previous treatments b/c it's been for infectious pathogens even though not specifically TBI? thanks.

i really have no right to post here b/c last week, i was seriously doubting having any parenting skills whatsoever -- which i used to pride myself on. something i keep in mind is that i believe Sammy missed his entire 7th and 8th grade years yet graduated on time and went to college with his peers at the 'correct' age. i do believe Beth mentions in the book, there was catch-up involved and I do believe Sammy is extremely academically gifted -- but seriously - his entire 7th and 8th grade years!!! last week for us was exceptionally trying -- ds, 6, was quite oppositional defiant -- which i find his most troubling symptom b/c i don't have so much patience anyway, but when that attitude of snotty challenging kicks it, it's doubly hard. so, i was off to find help -- with the behavioral therapist who diagnosed him but didn't so much have a plan in the beginning and more immediately, at the library. i have found some helpful strategies in the book When Labels Don't FIt. i do believe some of ds's defiance stems from sensory issues -- a lot related to time. there's been much more harmony in general and he's been more willing to do school work this week. it has good suggestions in trying to understand how your child experiences his inner world and how that then influences his behavior. it gives explicit strategies that can help -- which was what i needed. the book makes a distinction between "giving" - generosity of spirit, you're in control and making it possible for your child to manifest postive behavior and "giving in" - leting him have his way b/c you can't stand the behavior. when things are difficult in general, i do admit, i am not so giving to him. i've seen in the past few days, a little giving has brought big returns. we're in a bit of a different situation in only homeschooling for a short time. ds had a terrible time last spring semester -- i believe now b/c teacher was stepping up expectations, especially around writing. so he was balking at anything that woudl ultimately involve writing. with beginning this fall, i had decided i would not force that issue. i am acting as his scribe if he wants it. but, he will be in school within this year or next and i figured i would let someone with that expertise help on that. perhaps, if there is something like that at the root, you could get some assistance from a tutor - ?. i am also a huge fan of the book The Explosive Child. that's been very helpful for us with extreme inappropriate reactions. not so much for him changing his behaviors but for how we interact with him to keep it from escalating. good luck!

e

yes, when ds had first onset -- he was incredibly thirsty. he was 4.5 and in preschool. they had a snack section they could go to at any time to get a drink. i'd pick him up at 11:30 and he was literally crying saying he was so thirsty. i started bringing him a water bottle that was 8 oz and he'd down it in a few minutes. he wasn't previously and isn't since really much of a drinker. of course, he had pandas behaviors plus some things that are also considered yeast symptoms, which we were first investigating. i think thirst can also be a sign of yeast overgrowth - ? - . i'd definitely say i think it's a pandas symptom.

texas -- sorry to hear the omnicef is not working so much any more. i cannot really give you any advice other than to tell you our story, which yours sounds familiar .. . . ds presented with mainly behavioral issues -- separation anxiety, oppositional defiance, sensory. he had high titers and a positive throat culture. he was horrible on a 5-day azith -- prior to azith, he had improved a bit; on it, all troublesome behaviors came back with a vengenance. we switched peds and did a 30-day course of kelfex (cephalosporin, i'm quite sure same family as omnicef -- could be wrong, i don't know abx so well) and nystatin. within 3 days, all troublesome behaviors resolved -- 100% remission. he was great for the rest of the 30-days and a bit after. once off the med, he relapsed. again back on med -- saw some improvement, not as dramatic. he then continued to be 'okay', not really healthy -- maybe 90% prepandas. he got a flu and spiraled down -- slowly improved. we thought he was doing really well, school did not. strangely, he seems to do well either at home or school but not both, and it can vary. we further investigated other infections -- and found many, including lyme, toxoplasma gondii and CMV. initally western blot through regular lab was completely non-reactive. those seem to have improved, strep is still problematic. could the initial bad reaction to azith been a herx to lyme? possibly. he'd been on azith a couple years earlier with no bad reaction. my take is that he had all these infections -- when he got strep or it got out of control, we saw the behaviors as a result of the autoimmune reaction to the strep. perhaps the kelfex initially hit the strep and why we saw such great response, but wasn't enough to sustain it - either not enough to stop autoimmune reaction or due to other infections. i do believe some who see a pandas reaction have 'only' strep and others have other infections. i believe the reactions and behaviors we see are related to strep, perhaps the others have been 'silent' infections, may or may not be problematic. we are treating them all b/c i think ther is no way to tell what is the actual troublesome infection(s). so, my advice and it's only my opinion based on our experience, is to check for other infections if you are not seeing results with treatment. good luck.

falingapart -- did you say previously you were in MD? we had seen a naturopath when ds first presented with symtpoms. i stopped seeing her b/c she was thinking we needed to work on his gut and then let his immune system take care of the strep. i agreed we needed to work on the gut, but thought we needed to attack the strep. i think i just couldn't trust beefing up his immune system w/o also doing something to attack the infection. we are now seeing an integrative MD and he works more along the lines of doing both at the same time. i'd be curious if you are in MD who the naturopath is, would you PM me if you are comfortable about it?