smartyjones

oh mom -- you are so wise. i think balance in an individual is the key. i don't claim to be able to know the reasons but feel i need to share our recent story with ds9. last fall/winter, he began with pandas symptoms. as it intensified, we took him to ds6's dr in late dec. diagnosed strep, TBI, a few other viruses. he quickly showed good improvement on homeopathic protocol. early feb, i started high dose probiotic (25 billion, 6 strains). about 2 - 3 weeks later, he began with strong inattentiveness, poor cooperation, brain fog -- TBI symptoms but not his inital presenting symptoms. a few weeks later, went to dr early (not scheduled appt) due to these symtpoms. through a type of ART testing, dr thought ds looked quite good with infections. continued on, thinking this was morphing of symptoms. THANKFULLY, pandas16 posted a previous post asking similar questions. i never dreamed the probiotic could be a/the contributor to the problem. i don't know if it's due to TH1 or TH2 interactions,etc (b/c it's so very over my head) . however, i asked the probiotic co their opinion. they suggested i switch him to d-lactate free strains. i began researching d-lactate issues due to probiotics and it's generally extreme and reserved for those with bowel resection; however, it's discussed in the autism community and the lesser symptoms (not severe d-lactate acidosis requiring hospitalization) described ds's troubles to a T! i took him off it. at 10 days, no improvement. i thought i'd add s.boulardii b/c is different in the gut and thought it would help. day 12 was his best day since starting the probiotic 5-6 weeks earlier. a few days later, he tanked again. took him off s.boulardii. is now about 14 days off and he is much better. still seeing some inappropriate upsets but his focus is 1000s times better. ds is not taking abx, is taking homeopathic remedies aimed at healing infections and detox. i think i overloaded him with too much good stuff. was his issue with d-lactate? did the probiotics induce an inappropriate cytokine reaction/interaction? i don't know. i do feel quite confident the troubles are the result of the "help" i was attemtping to give his gut. he'd taken a similar formula, though not those combo strains and at 8 billion in the past and been fine. there seems to be a bit of info about probiotic strains in the chronic fatigue world. i read a quote that people with chronic fatigue should be careful and not take probiotics "willy nilly". i'd have to say now, i'd put our family in that camp. i think i now think probiotics may be a bit stronger than i had been thinking -- and maybe not always for good in all people. but, in line with pandas16's initial post, perhaps strong enough to provide a key! unfortunately, i'll never know if i'm right b/c i'm not going to 'complete' this research experiment and put him on it to see if he has the same reaction again!!

momaine -- so sorry to hear your frustration that actually, we all share! unfortunately, no, we did not find help in the psychiatric/psychological realm. we knew we were dealing with pandas quite soon due to a savvy behavioral therapist who diagnosed, but couldn't really provide strategies. our 'behavioral specialty' pediatrician was a complete joke. our next highly referred OCD psychologist was disastrous -- how he had a degree working with children is beyond me. he was part of a practice that i really wanted to see 'the OCD star' there but she wasn't accepting new patients -- and a year later, i met her in person at the OCD conference as she attended a pandas lecture that was just then educating her. our next step was a psychiatrist who seemed to get it at first but i reallly don't think did. at the OCD conference, a psych who i have huge respect for stated he didn't 'really get it' until just a few years ago. so, unfortunately, i terribly jaded and found no help from the field. however, i do believe momwithocdson on the pandas board has found help there. her son is not in the lyme realm but she will probably be able to help guide you. you're working on different pathogens but i believe what you're seeking would be similar. i'd suggest PMing her. she's so wise and (unfortunately) experienced in what it seems you are seeking. i haven't seen meg's mom on the forum lately, but she is also very well versed with OCD techniques and could probably provide some referrals and suggestions. i'm not currently looking for help from that field (ds is doing quite well -- checking into listening programs from OT for remaining help) but, if i were, i'd try to e-mail dr leckman at yale for a referral. good luck.

holy moly -- "know the symptoms, change the outcome" -- fabulous!!! that looked like that was copywrited? as difficult as things can be, i sometimes just think of those that are treating behavorially only -- likely where we would have been except for a very savvy behavioral therapist!!

yikes!! two years ago, when ds was diagnosed pandas but not yet lyme, i found a bloated tick on me. dr put me on 2 weeks doxy. lab tested tick as negative -- but it got a little crushed and i believe they likely only tested for borellia. (way before my TBI education). was an insurance covered test at hospital affiliated lab. just my opinion, but even if the tick tested negative, i'd be leery to trust that. so, i don't know that i'd put much $ into testing it. i think my TBI issues are prior to that. i didn't really herx but did feel sick on doxy. interestingly, when i first went to current dr who does a type of ART, i didn't so much test for borrelia, but for bartonella and babesia. who knows when/how everything came into play. the other day, my ds's friend's parent told me a couple of years ago, he had relapsing fevers. dr's couldn't give diagnosis but his white blood cells were down. in the office, he read an article in a magazine about TBI. he suggested it to dr. they put him on 2mths of abx and he's been healthy since. so -- on the bright side, you are aware of symptoms, you know there was a tick bite and you'll know what to watch for!! good luck.

so i just have to share with those that understand. . . in my e-mail, a priceline ad popped up -- "BID alert!!" i think, ' what? -- twice a day alert -- what are they talking about' oh no - not twice a day -- just simply the word bid b/c it's a priceline bid. ha ha

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic. this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!!

wow -- that's surprising such a difference from a cheap one. what do you think -- are you just going to stick with that or make the bigger investment? do you have a recommendation?

just got a report from my state and surprise -- not a deer tick like i thought -- but a lone star tick. many will say lone stars do not transmit lyme disease. and what i've found agrees -- not borrelia -- just possibly rocky mountain spotted fever, q fever, tularemia, ehrlichiosis, and STARI. YIKES!

this is about the third time i've seen this drug mentioned in about as many days. i know it's an old cholestrol med, is it just a prescription med that does the same as chlorella or bentonite clay? or it is different? or is it more effective as a prescription med? thanks.

buster -- so interesting. i wonder if the parents of the older and/or more recovered children could get the kids insights to share. i've always found Sammy's thoughts and memories so interesting -- but it's just a smidge of insight. tay tay -- i have a much younger child and a boy, so maybe not so much relevance. as everyone knows, i so love the book The Explosive Child. one of the techniques to help stave off an explosion is to repeat what the child is saying. it provides a type of acknowledgement that can be soothing and then allows a path to solutions. i've also found this a very helpful technique to gain insight into how he is thinking. you can google explosive child and the author has a website. i don't think the info on the site specifically speaks to this technique to garner info but it is effective for that. i think the website is more about talking to then devise a solution for future actions. basically, you'd repeat what she is saying and stop -- don't add any convincing, explaining,etc. at first, try it flat, devoid of emotion. as you get better, you can add humor, questioning, shock, etc. in trying to get info, you may have to do it in a number of 'sessions'. first, you say something, then repeat what she says, continue as long as you can keep it going without stalling or annoying her. you, 'we need for you to take this medicine b/c it will help the infection that the doctor found you have.' she, 'i don't need it, i'm fine.' you, 'oh, you don't? you're fine?" she, 'yes, i just got mad b/c X.' you, 'oh, b/c X". i now do it with a lot of "oh"s and "hmm"s and "really"s. you mention bizarre actions. not at the height of whatever is happening, but after at a calm time, you can ask why she did or said X. then do the repeating and see if you can get some insights. my mom's friend starting doing it with her difficult husband and found him much easier to get along with. it sounds as if it would be completely annoying to the other person, but it seems that the more unreasonable the person is being, the less they notice. may be worth a try. for my ds, it disarms him and he doesn't feel as if he needs to defend his position so much b/c i'm not trying to convince him of something other than it.

samra -- i wish you well in your fight with this and wish you all the best with your path to follow. i suggest you do some very good research about Dr. Singer and fully understand who he is in the pandas world and where he has historically stood. good luck.

i've seen some posts from people regretting where they live -- i.e. in the open, near woods etc. don't feel so bad. we live 2 miles from our state's capital city, with population about 35,000. in a neighborhood of about 50 houses, with our lot less than 1/4 acre. we have small grassy yards and trees - nieghborhood is about 18 yrs old. . this afternoon, ds9 went out our garage on his bike, down our paved driveway, rode around the paved streets of the neighborhood. sat on a small plastic chair on the paved sidewalk. got his scooter from the garage. went around a few times. sat on the same chair. came inside. i was feeling outrageously tired -- yesterday treatment change and wine on Easter, i guess. i wanted to sleep and had them watch a DVD in my bed. as i lay my head on my pillow, i see a tick crawling on ds's back collar. yep -- it's about the size of a sesame seed and looks reddish. i first threw him in the toilet but then saw my state will ID it -- not test for lyme, just ID type. so i fished him out and he was still alive after about 2 hours. i think i thought they would drown. they refer a company that will test for $75. they recommend not putting it in alcohol, i thought you were supposed to. i'm not going to test b/c it wouldn't matter -- we're already on the TBI train. this son is diagnosed with all TBI and i say i've never seen a tick on him. plenty of mosquito bites, but this is the first tick i've seen. if i hadn't have seen, he'd have gotten ds or dh tonight in bed!

i don't believe my kids have neuropsych lyme and TBI. i believe they have those infections that were part of what flooded the bucket -- or whatever that correct analogy is. i think my kids correct diagnosis would be PITAND -- multiple causes. help me, Wendy, what is the proper one -- multiple chronic infection syndrome - ? but with primarily neurological symptoms. actually, ds6 - totally neurological; ds9 - primarily b/c he did have other symptoms, but not to degree of neuropysch ones. both kids had pretty classic pandas presentation. ds9 psych symptoms would easily have been written off as a phase b/c of others things happening (like us selling our house, homeschooling right now); has had ankle/knee pain intermittently past couple of years -- he's a 9 year old boy who plays street hockey and throws himself down catching a football -- easily explained, but also TBI symptoms. ds6 had high titers and positive culture correlating with symptoms, 100% remission on keflex. ds9 had normal ASO and high anti-dnase B, when psych symptoms first appeared. with beginning of treatment, more babesia symptoms came out -- not sure if that's b/c of treatment or b/c was presenting itself. i think strep pushed the symptoms into action but it was the straw breaking the camel's back -- the straw causing the symptoms we witnessed, yet the camel was weak due to muliple infections. i will disclaim i am a strong believer in the whole 'infection - triggered' of the whole issue and believe in getting rid of - or bringing into line -- the infection as key to healing. i also remember an article i read about studies on those who died of the type of brain tumor Sen Kennedy - and a neighbor of mine - died of. a ridiculous % - like in the 80s ofr 90s - had inappropriately high levels of antibodies to toxoplasma gondii. perhpas a lot of people do also and they just don't test for that in an autopsy. it seems a cruel riddle that the more we discover, the more we discover we need to discover.

i wonder if it's like so many other things that a 'healthy' individual wouldn't show symptoms but one who is compromised by who knows what can handle much less.i guess that related to the realm of IVIG i just can't seem to get. it's always made sense to me if you did it monthly -- i don't get the 1, 2, 3 times. perhaps, it bumps the immune system to deal with the troublesome things that it 'should' be able to handle, as in, most of the population has it but it's not to troublesome but this particular person is having trouble -- ?? -- like EBV. my kids also test for things that traditional med wouldn't believe they have b/c 'if you really had that, you'd be very, very sick'. my thought is that some of those things affect certain people in ways different from being really, really sick. i guess like many of our kids that don't get traditional strep b/c of course, if you've got strep - you're throat really hurts or you're notably sick. my ds6 -- pretty classic pandas, 'sudden' onset, high titers, positive culture -- had a completely non-reactive quest western blot -- all bands non-reactive. we did not do igenex. he wasn't healing and we consulted an integrative MD. through a type of ART testing, he tested positive for lyme -- borrelia only. i just skimmed but did i read it correctly that dr t - i think the other presentation -- was hypothesizing about type of infection correlating with symptom presentation? i think there's got to be something to that so i may have been reading into it. ds6 did have quite high titers. i wonder in those with band 41 if there is a correlation with low titers - ? - just a thought. for ds9, i do not have the breakdown of bands -- lab corp. the test reported neg -- but really just done for curiousity b/c we see the integrative MD. though integrative tesing, shows trouble with all TBI. there was just a post on the lyme board -- really concerning mold -- but of a dr shoemaker in the chesapeake bay region. he got into neurotoxin disorders due to pfisteria outbreak in 1997 (remember that, tmom - ?). pfisteria is a dino-flagellate. i don't know if that would react for this test but a bit disheartening that dr t termed it something like "yet unknown". i think there is treatment for pfisteria -- ? i know, i know -- i'm crazy woman in favor of testing for any and all toxin/bacteria/virus!

wow -- stunning. thanks michael for posting. i haven't heard of shoemaker. would you mind elaborating on how you are using that website/info in your treatment? i moved to the chesapeake bay area in 1999 -- i remember the pfisteria issues. ds6 and i have infections diagnosed thru a type of ART that we 'shouldn't' have -- one is toxoplasma gondii -- i lived with cats for a less than a year long ago in my whole life. it could be through dirt, etc. i've often wondered if there's a connection having walked/swum in the bay -- could certainly be a source of infection. i'd certainly be interested in hearing more from those who know of shoemaker and his diagnostics and treatment. thanks.

i'd think it would be worth a try to see if you could get a referral from Dr. Leckman at Yale. you can google James Leckman and Yale and then e-mail and ask if he could help with a referral to someone in your area.

mandy -- my ds9 plays baseball. he's had a rough start to the season but he's been with this same coach for 3 seasons so they've been very understanding and have cut him many breaks with missing practices and not wanting to fully participate. during basketball in the winter, he was getting horribly winded. he used an albuterol inhaler that seemed to help. this was in the beginning of TBI treatment so i don't know if it was general symptoms or herx-like symptoms. about 2 mths ago, he was having trouble keeping up with the other kids when running the outside of the baseball field even with the inhaler. he'd drop off half way around and need to walk. i started giving him choloroxygen (liquid chlorophyll - supposed to help the red blood cells carry oxygen - ?) drops before practice. now that games have started, they're not really doing that running. i don't know if it helps or not but he now takes it before a game. i can't remember you dd's diagnosis. i think it is babesia for ds that is causing the breathing and endurance issues. he's doing better now -- likely due to improvement due to treatment. he was enjoying running the length of the football field the other day.

i believe long ago, someone -- perhaps vickie -- spoke of their child reacting to another child in this manner and i think they later discovered the child had strep. is that familiar to anyone?

there is a story in one of Andrew Weil's books about - i read it a long time ago (pre-pandas) so certainly don't have it totally correct - somewhere in Europe that was a valley with a monastery on the mountain (or reverse but i think the monastery was on the mountain). people in the valley would have bouts of 'crazy' and they'd be sent to the monastery where they were cured. at the time, the people believed it was a divine intervention situation. they later discovered that the people were reacting to mold in the valley and when they were away from it, they would not have the symptoms. i would guess pressure could also play into it.

anyone else still on this? pandas16 got me thinking b/c it was about 2-3 weeks after new probiotic (6 strains, 25 billion) that ds began inattentiveness. he is being treated for lyme and co-infections but had been doing well with symptom abatement. inattentiveness, lack of cooperation and moodiness were not really presenting symptoms. i had thought it was morphing of symptoms. this post has me wondering.' he's been off for 1 week but no real difference in symptoms. we do see a dr who does ART and went back b/c of these new symptoms. believe it or not, i had probiotic in my bag with other supplements (multi-vit and fish oil) to test ds and forgot about it. i first was looking at th-1/th-2 responce and then went on a tangent of d-lactate producing strains. culterelle, which i believe is lacto CG, is used to treat d-lactic acidosis -- so this would not really pertain to pandas16's original post since she said that was a major troublesome one for her. maybe th-1/th-2 is the right track for what she originally was talking about. as with so many other things, it appears balance is the key. a CFS website mentioned it's not a good idea to take probiotics "willy-nilly" - which i now think is probably good advice. some strains produce lactic acid which "inhibits the growth of pathogens and stabilizes normal flora". l. plantarum and l. salivarius prodcue high lactic acid. both were in ds's formula. however, gutpro uses them as non d-lactate producing and says l. acid is d-lactate producing. now, d-lactate acidosis is serious and would likely require hospitalization -- stupor, confusion, slurred speech, rapid breathing, hyperventilating, headache. most studies i found were children with short-bowel syndrome (removed) that had serious trouble with probiotics. however, other symptoms are -- aggression, inabiltiy to concentrate, agitation, carb craving, "unhappy", irritable. -- that describes ds! i believe d-lactate producing strains is something talked about and avoided in the autism world - but do not know. i fear that in trying to help him be more balanced, i've thrown him out of balance. he's off all probiotics. i keep second guessing if he should be on something - then think none is better. he is not on abx b/c we are using a homeopathic protocol. maybe s. boulardii b/c that works in a different way than other probiotics. anyone have experience/thoughts with d-lactate producing strains?

pathfinder! -- can you elaborate? were you on that other post about probiotic and cytokines? it made me think my son's inattentiveness may be due to new probiotic. perhaps a d-lactate reaction. i've stopped it about a week now but no real change in behaviors. thanks.

susan -- i'm sorry you are feeling so badly. i can't really speak to the why's of the abx. . . just wanted to mention that i was on doxy a few years ago and i felt horrible. it was after ds was dxd pandas, before dxd lyme and before i knew much about TBI. i found a bloated tic on me after gardening. my dr put me on 2 wks doxy. they tested the tic and said was neg -- but i don't even know what for -- just borrelia - ? anyway -- after the first few days or week, i felt horrible. after taking it, i'd feel sick to my stomach and sometimes dizzy. i also got sunburned a few times even tho i thought i was being careful. i'm not sure, but i think i've read that some people have changed from doxy. i think lymemom may have some suggestions on how to best take it.

just curious why she's not still on the omnicef if you were seeing improvements with that abx? why switch to keflex? i do believe they are in the same family - ? i am admittedly the most poorly informed person here on abx. it does stand to reason that any one person could have any reaction to a particular abx. just our story -- ds was first put on azith for 5 days. had a horrible reaction. many troublesome behaviors that had lessened returned with a vengenance. at the time, i thought it a bad reaction to azith -- although he'd been on it before in his life with no trouble -- i still don't believe i'd ever put him on it again. a month later, he was on kelfex for 30 days. in about 3 days, he had 100% remission. we later (about 1 yr) found lyme. was that first reaction to azith a herx? why 100% remission even with lyme? i believe it was b/c lyme was 'underlying' and the behaviors we saw were due to a strep interaction. they keflex handled that but wasn't able to sustain pitand entirely. so many unknowns!! i do believe there are some abx that are more commonly thought to bring a herx reaction with lyme. i don't believe keflex is one of them. but again, i am very uninformed about abx. it could be many different interactions that are bringing about what you are seeing. how is she now later in the day? can you try epsom salt detox or sauna that you don't have to get into her by mouth?

lismom -- what dosage are you taking? i think i read 3000 mg is general and 5-7000 is detox -- ? increase at about 500 mg every few days? what are you doing?

susan -- is the school/teacher supportive? could they have her doing something not with the mainstream class -- a special project or something -- not in a punitive way but in some other way that could keep her occupied but not in situaitons that she could be disruptive? good luck!