smartyjones

for some kids, different abx work best - for some, it's a bit of trial and error. at onset, we believed ds to have a penicillin allergy. he was first put on 5 days of azith but had a terrible time with it. at the time, i thought it was a negative reaction to that abx, although he'd been on it before in his life with no problem. we later discovered lyme, so it could have been a herx reaction. we'll never really know. it was so horrible, i think i'll avoid azith in the future. he was then put on 30 days of keflex and had 100% remission in about 3 days. but, alas, only 30 days and he relasped about 30 days off abx. if i only knew then what i know now . . .

sorry -- i don't know how to make the link to the video. the post was courtesy of EAmom. if you do a search under her posts, the thread is called 'found this video on you tube', dated Jan 7, 2011. thanks EAmom!!

i fully agree with the other posters that tics are not required to be considered pandas . . . but did want to mention that tics are quite a complicated topic . at the time of ds's onset, i saw eye-blinking one time for 2 seconds. i considered he did not have any movement disorder. as i've learned about tics, i now realize he has done some things that may be considered tics but not overt movements that you'd think of when discussing tics, much more subtle, not really appearing to be a disorder at all -- more that someone very skilled in the observation would catch. there was once a good video clip posted of a woman describing type of tics vs. compulsive movements. if you're interested, i can find it.

beesknees -- i cannot shed light on your actual question -- but we have had similar experience. ds6 had high titers and positive culture with onset of fairly classic pandas symptoms. he had 100% remission when got on the 'right' abx for him - keflex - but relapsed about 30 days off of it. he had some improvement when back on but not as dramatic and further relapsed with another flu illness. he remained in an 'okay' state but not 100% and with behavioral flairs. his titers have been lower each time they've been tested. with the flu exacerbation, dh was sure he'd test positive for strep -- culture was negative. b/c he seemed in this kind of limbo state, we sought consult for other infections. we see an integratvie MD who does a form of ART testing. he diagnosed multiple other infections. i don't think the pandas diagnosis was 'wrong' but more 'incomplete'. i now believe it should be 'pitand - multiple causes' or MCIS - multiple chronic infection syndrome (i think that's correct). basically, his immune system took a hit somewhere along the line with infection and then was susceptible to other infections. we are treating all infections. i think the strep was the straw that broke the camel's back b/c we saw classic pandas. i don't know which was 'the' troublesome infection or if it's a combo of some/all. we don't see dr b, but i believe he does discuss other infections in addition to strep with patients. also -- through the testing that we do, ds was testing as strep being troublesome for him for quite some time even though titers were falling and cultures were negative. many believe strep can 'hide out' somewhere in the body. ds's titers were falling but were still high -- so if each test was the initial - it would still be a red flag that he had infection, but the falling didn't indicate remission of symptoms. i think titers, if they are high, can be helpful in the beginning in indicating that there has definitely been a strep issue but for judging treatment success are not so helpful.

what is the value of knowing pathogen life cycles matched with possible symptoms - ie, migraines every 5 weeks. is it for identifying and diagnosing possible pathogens? i just skimmed LLM's - would it be matching pulsing treatments to cyclical symtpoms?

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tpotter -- i know you see/have seen pretty much all the big names - one of whom i believe also has a speciatly in this -- but, have you considered migraine headaches?

edit -- i should disclaim that we did not have previous contamination or food issues except this short-lived time so keep that in mind when evaluating what i say. i would say YES - it's okay to pick your battles this week!! esp b/c you know of the strep so you have a very big known cause. if it goes on for a week or few more, you'll have to reassess, but for now, yes, get through the week. my ds, now almost 7, had extreme food contamination OCD last summer in what i now believe was a herx-like reaction to an antiviral. at the time, we were worried about malnourishment -- more specifically, dehydration -- it was a challenge to get just enough into him to avoid ER hydration. however, the issues came on and melted away quite regardless of our interventions. at the time, we were at a point that if he insisted on something or something had to be "right", he could say if ther "was a reason" or "there was no reason" or "there's a reason that i don't want to say." . for this, he said, "there is a reason that no one can ever, ever know". i'd never heard him say that before or since. for us, since we were worried about intake, he was starving and wanted to eat, but couldn't seem to "bring himself to", all bets were off -- eating bacon at a Whole Foods cafe held above his face with grease dripping down his arm; eating raw muffin batter face down out of the muffin tin; ripping the tape off an asceptic package with his teeth, eating with his face on a plate like a dog. generally, i like to think i usually promote proper table manners with my kids. all of this 'nonsense' faded away -- some things faster than others -- without heavy intervention from us. at some time later, he said something that there were reasons for not eating but he'd forgotten what they were. from what you say, i'd consider this separate from your ERP work, due to recent strep, and plan reassess where you are when he's healthy without worring too much about doing damage to your previous work and successes. yes, pick your battles. GOOD LUCK!

i don't have really anything to add to the abx discussion, but about reducing meds. . . ds is not on abx but follows a homeopathic protocol. he did see 100% remission with abx at first, then backslide after being off. saw improvement when back on but not the same 100%. then went on one homeopathic formula for strep - exacerbation with a flu and trouble recovering, while still taking that. many months later, changed to another homeopahtic formula. with both formulas, we saw backsliding when we tried to reduce the remedy. 2nd formula, 1st backslide -- dr said we'd just keep him on higher dose for a long time. after 9 mths on that (almost 2 yrs since beginning pandas journey), he tested neg for strep through ART-type testing for the first time. titers were falling that entire time, since initially tested. a couple of cultures were negative during that 2 yrs since initally positive. my advice would be to watch and document very carefully what you are seeing when you reduce. i wouldn't wait to see if something that makes you think 'hmm' is really anything - i'd assume it is due to med reduction and up the dose. good luck and i hope she does well with reduction!

not specifically related to ivig but more pandas in general. . . i do try to remember that Sammy missed something like his entire 7th grade year but when he was healthy joined his appropriate class ( i assume he had tutors/extra help). i'm quite sure he graduated from high school with his same age peers. perhaps you could e-mail Beth Maloney for more exact details.

there was a little bit of discussion about this a few months ago. i don't know how to really link it but this is the name of the thread. . . What info do you share with "regular" doctors? Do you tell them you are being treated for Lyme?

ds6 is back on an anti-viral that caused a tremendous herx last july. it's much better this time around but still producing symptoms. i know this is neurological and am hopeful it will soon pass. however, it's driving us all crazy. some are funny little dittis that stick in your mind -- "aaaaallllllmmmmmooooonnnnnddddd, almond breeeeeeeeze" repeat, repeat, repeat. "did you hear the ding?, did you hear the ding? did you hear the ding?' others are more troublesome like saying the same 2 numbers next to ds9 who is eating breakfast. i tell ds6 to please go in to dining room and he can say all he wants. he refuses. ds9 goes away. ds6 follows him and continues same sayings. ds9, understandably, is terribly annoyed. it's been about 2 weeks with various symptoms and ds9 has been understanding -- but this is wearing on him. before this, he was doing this combo 6 yr old/tic thing. he's imaginary pitching/throwing. i tell him to go outside or in the open room. he likes to do it around us. he cracked me on the wrist the other day. i think there are no 'consequences' for this as a compulsion he must do, nor is it an 'involuntary' tic. i think it's an 'uncontrollable autistic type tic'. eamom once posted a video clip of a woman discussing tics vs. compulsions. she mentioned this and it was the only thing i've heard that describes it so well. it's a movement that provides comfort as in righting things - i guess kind of like a stim. so - i am not really trying to get him to stop -- just move to a more acceptable place. i think we somehow have to manage this rather than just let it be. is this wrong? i was skimming a book this weekend by Temple Grandin and she said her mother always insisted on proper table manners and interpersonal manners and she now thinks this is good and suggests such for parents of autistic kids. anyone have any ideas or thoughts? thanks.

momofgirls -- curious -- were there viral infections you didn't mention that you found by ART or was it general protocol to use antivirals? did you treat with traditional abx and meds? yes, what you mention about PEX and IVIG has always stumped me also. a leading dr told me about a year ago, that the IVIG shuts down the immune system and when it reboots, it doesn't have the same problem - just like rebooting your computer. i just can't understand why it won't go into the same malfunctioning pattern if the infection is still there that caused it in the first place. the only thing i've been able to piece together is the antibodies also help the infection b/c some of these infections are ones that the body should be able to kick on it's own but our kids don't seem to -- i don't know -- that's always stumped me about ivig.

what do you mean -- dr b and/or dr j listen to the ART diagnosis? i think you have to understand that they are different ways of approaching medicine -- so you're asking dr's who have worked in one mind set to accept another. i think the most to hope for is that they are open to investigating what you may say you have found through ART. i don't know that they would or even that i feel i would expect them to treat in their manners what you say was discovered in an ART diagnosis, unless they then find evidence of it in their terms. it's difficult to try to walk the line between traditional and alternative/complementary medicine -- i've been trying for 2.5 years since pandas diagnosis. i do feel fortunate currently that i think we have found some open-minded helpful people that work in line with their beliefs and experience AND are open to what i have to say about my experience/research AND to entertain ideas other than their own experience. however, they will not treat based on something other than their philosophies. that's where it comes in that i have to make the decisions about what path to follow. but, i don't know that it's really that different than any one else on this board navigating these unknown waters. our experience -- when ds6 was first diagnosed through ART, i called ped office asking for consult -- asst told me procedure of dr's notes, etc, etc, etc. i decided it wasn't worth the hassle, time, money b/c i was going to follow ART based treatment anyway. at ped appt. a few months later (consult for extreme ocd non eating that i believe was herx but needed ped in case ds ended up in hospital for IV hydration) -- ped told me that wasn't really all necessary and he would have had me come in for office visit and discussed it all. even before that, we have discussed that we are using homeopathy (ped is from india, homeopathy is part of medical training - for familiarity, not so much training in it -, his mother had been into homeopathy, his treatment path has gotten much more traditional than when he began medicine ). he is clear that he is open-minded about my choices but will give me opinions/treatments based on his expertise due to his experience. ds9 -- diagnosed first by ART for all TBI, strep. was having physical symptoms, most serious of shortness of breath and poor endurance. i did consult with ped even though was planning on following ART treatment plan but wanted to be sure about other possible causes. did blood work, EKG, chest x-ray, expensive echocardiogram. all neg. basically, shoulder shrug from traditional medicine (i don't have blame, think is what most would find). about 5 mths into treatment, most of ds's issues have resolved. i don't have experience with dr j or dr b, but think they would have to do their own tests to then treat. but if you asked for investigation of something, say CMV or HHV, it seems they should do it. other note -- someone asked you about bentonite -- i was on treatment for bartonella for 4 mths. i added small amt of bentonite and shortly after got small bartonella rash that lasted a few days. at same time, migraine (that i have history of) were frequent and intense. this lasted for a few months. related? possibly. good luck!

you're asking, so I would ask dr's if we should investigate if there are viruses at play as well. you seem to be in quite capable hands in the medical field, you seem to have bases covered as far as treatment for bacterial infections. just my opinion, but i think viruses may be an underinvestigated source of trouble. i know it's incredibly frustrating to keep searching for every possible, crazy trigger! good luck and i hope things settle down!

LLM -- happy to hear you are enjoying some good times! still always trying to figure out the herx issue. ds6 had a horrific herx-like reaction to an anti-viral last july. he is back on that same med -- certain ramp up in hyperness and repeating words. tomorrow is day 11 -- last time when he began with hand washing, 'surgeon hands' and non-eating. i'm confident we are not going to see such extreme again -- dr didn't think so b/c he'd already been on this med. although we've seen ramp up -- it's different. don't jinx me famous last words! anxious to get to the other side. i know typically it's said herxs should not bring on new issues. this was all totally new for ds. it came on and melted away without regard for our interventions. our dr believes it would have come out at some time in the future as a symptom had we not been treating him -- kind of just hadn't presented yet. i'm now totally confident this was brought on by the med in a herx type manner. so, i feel we've experienced, lived thru and now reliving herx. curious to hear thoughts more about ds9's experiences. he had what i now believe to be a negative experinence to either type or amount of probiotics. the company suggested d-lactate free product and when i researched, he seemed to be having classic reaction. about 2-3 weeks after starting, he had inability to concentrate, agitation, carb craving, 'unhappiness', irritabilty. after i took him off, a bit of a rocky road b/c i added in s. boulardii at some time after taking him off first probiotic but he had improvement, then decline and now extreme improvement when off all probiotics. however, all these are also TBI symptoms. at first, we thought he was having a symptom morph due to TBI treatment. now, i feel quite confident it was a poor reaction to probiotic. however, another million $ question in an illness where there are so many -- how do you determine if it is in fact a herx or a reaction to medication or combo of meds? a herx would indicate need for more of the med b/c it is doing something positive; a poor reaction would indicate get off the med. so, for ds9 -- was the probiotic a bad combo for him that he shouldn't take or was it an indication that he needs something? we see an integrative MD who does a form of ART and ds has an appt in 2 weeks so we will hear what he believes about current state of infections. ds is clinically doing great right now -- physical symptoms gone, focus back, generally happiness back. but, you know, always have to be thinking and researching!

you can search this forum using his name for more info -- probably about 2 or so years old. i believe he is a world-renowned expert on movement disorders so you may get some good info there but maybe not too much support in the cause if you believe it to be infection triggered. singer was involved with the NIHM pow wow. around that time, another leader in the pandas field that i hugely respect, told me he was hopefully and confident singer would be open-minded to the discussions there. don't know how that turned out. wedo have personal experience with another dr at JHU - who was helpful and hopefully referred us to singer -- with a hearty recommendation that he was a pandas expert, it was a 'pet project' of his for the last number of years and he'd likely be helpful. we didn't see him but i spoke extensively with his asst and decided it wouldn't be worth our time, money or psyche. this all could have changed it the past few years. ds has had primarily behavior symptoms -- only things now that i am more educated think could be slight tics. at the time, i likely said he had no movement issues. keep us posted with what you find out/do.

yes. i think w/o it, ds6 would have just kept having periods of 'good' and 'bad' without truly reaching remission. not that he is there now, but he's been doing markedly better lately. however, dr did put him back on anti-viral that caused intense herx-like reaction last july b/c he sees evidence of that virus back/out of hiding. ds is quite hyper. dh keeps saying, 'it's challenging, but at least he's eating' -- herx was OCD non eating. it came on at day 10 last time but there were precursors -- we're at day 8 now. so white-knuckling it. but anxious to get to the other side. all in all, i truly believe we'll reach a point of some type of 'cure' (using that loosely -- really mean remission that we watch closely) that we wouldn't have otherwise. it's stunnning when i think of ds9. of course, we were much more aware when he first presented strong symptoms, so caught troublesome issues quicker -- although he likely has had infecitons for a long time -- or perhaps congenital that got pushed over the edge. i very much like our ped but not using him to treat these issues. most notable physical symptom was 'exercise-induced asthma' symptoms. blood test for TBI all neg. did much 'checking out' in a traditional sense, including chest x-ray, blood work, EKG, very expensive echocardiogram. end result was basically a shoulder shrug and suggestion to use inhaler before exercise. which we did to make ds more comfortable. with integrative dr, we really felt we were treating the root cause. 5 mths later, ds9 is doing great physically. neuropsych symptoms left quickly, then we had trouble with brain fog/cooperation which i now believe was due to probiotics. no more ankle/knee complaints. back to on par with 9 yo boys as far as endurance and ability -- now w/o the inhaler. so absolutley, i believe w/o following TBI path, ds would have been tied to that inhaler and depressed as he fell out of line with his peers b/c he is very athletic and sports oriented.

a while ago, someone mentioned The Listening Program on the lyme board and the success they were having with it. i've been researching/searching for practioners etc and although we haven't officially met, i think i've found someone that may be quite helpful for ds -- trying not to get too excited. this guy is from a education/special eductional background, also trained by OTs and runs a tutoring business, quite knowledgable in auditory processing. not familiar with pandas but has been trying to read up. he uses many 'programs' in his business so there seems to be much flexibility to find something that could benefit ds. his fees are reasonable but many programs have fees, which i discussed i have concerns about something being the 'answer' that will then just be a lot of spent $ for us. i think he's reasonable and gets that. i feel we need something to help with ds's focus but also, he's been doing quite well with health -- but i just feel we also need something to address the fact that from ages 4.5 to 7, his brain has been under this attack. what are your thoughts -- there have to be gaps in 'normal' development in these kind of key development years just due to that fact, don't there? academically, ds has remained above average -- but i wonder about processing issues. anyway -- curious -- does anyone have experience with auditory processing listening programs? thanks.

i think it could be both. unfortunately, that area of brain research for bacteria and viruses is quite lacking. i think that could be a key. our dr does believe many viruses/bacteria can get into the brain and "bother" it. but also for ds, motrin has been a clear remedy. perhpas there is infection in the brain that causing inflammation, and it's the infection itself and not antibodies. or it's antibodies that are trying to get the infection but are also getting the brain.

i don't know the ins and outs of herxing, but we did have psychiatric symptoms only in reaction to an anti-viral. ds has been seeing his current dr for a little more than a year. at first, he diagnosed multiple infections. sometimes, for appts, there were clear worsenings or examples of things going on. for the most part, i'd say it just seemed like a mixed bag -- good days and bad -- not so much rhyme or reason -- not 100% but 'okay'. a few months ago, i said he'd have a great couple of days and then back to his 'normal'. the dr commented that he thought it was a good thing that we were seeing the good days, not so much a bad thing that they weren't consistent. at the time, i thought he just didn't get what i was meaning. in the past month or so, i do think my ds has been on an uphill swing -- better than i've seen before. so yes, it's hard to deal with when you have the good and you just want it to last -- but at least, you are seeing some days of that wonderful, well balanced son! ds is only this past week back on that anti-viral so we're bracing for another wild ride -- hopefully, won't be so wild. i was surprised b/c i thought he was seeming better so it's hard to put them on something that can bring some wildness back -- but hopefully, this will kick it to the curb! i'm hoping that for you too!

your initial question about sleepiness -- my kids have not really had trouble with excess sleepiness. i don't know that i've heard of that as a type of hallmark symptom as much as interrupted sleep or trouble falling asleep. of course, if he has trouble going to sleep or getting adequate rest at night, it would follow to be excessively sleepy. i went to ds's dr last aug, mainly b/c i have thyroid issues and was experiencing much irritability. he concluded i had multiple infections as well, including babesia. you may want to look into that. sleepiness had not so much been a problem for me now, but i think i had some acute tic borne illness symptoms a few years ago and they had kind of subsided. back then, at times i would be so sleepy, i'd lay down on the floor to play with the boys and their cars or to read and would fall asleep. i also had some breathing things that i now think were likely babesia. perhaps that could explain the sleepiness -- ? my ds9 is negative on all TBI tests through lab corp. however, he had pretty classic babesia breathing symtpoms -- shortness of breath, pains, seemingly exercise-induced asthma. he blew very low on a flow meter and pulse ox was low. chest x-ray and cardio consult were fine. he couldn't play 4 minutes of baseketball in jan/feb. an inhaler did help. traditional med kind of shrugged their shoulders. he's done well with our treatment. yesterday, he climbed an extremely steep hill on a hike and was tired but barely winded w/o the inhaler. i don't think he could have done it w/o stopping multiple times a few months ago. my point being iwth that story is tests results can be questionable. but you sound quite pro-active and your dr seems on the ball. i definitely think you have enough in the history to still be thinking about an infectious cause.

tired -- are you seeing a 'pandas expert' or a dr who believes in pandas? i think there can be a big difference. first, i will disclaim that i am a big believer in getting to the root cause of the trouble. both my children have shown to have numerous infections. ds6 had clear strep indicators, had 100% remission but relapse. when he wasn't getting healthy, we searched for other infections. ds9 went straight to our current dr when he started with symptoms and was found to have numerous infections. i now consider them to be PITAND - multiple causes. are you familiar with the distinction btwn PANDAS and PITAND? you do have some evidence of strep with titers but it sounds like you have multiple evidence of other infections as well. i looked at the klein levin foundation and saw they state they don't know a cause. it sounds to me like your ds has enough history of infections to NOT just label with a syndrome that seems to fit and not keep searching for the cause. perhaps it is 'klein levin' . . . but why? good luck.

laure -- so sorry -- it is so hard. i don't have any insight into your situation but wanted to mention our story. we follow a bit of a different course with an integrative MD, who does a form of ART, we treat with homeopathy. last july, ds started an anti-viral that he had an intense herx-like reaction to. it was a contamination OCD reaction involving food. it was hot july and each day for about a week and a half, he drank just enough liquid to keep him out of the ER for IV hydration. it was very scary. that intensity lasted for only about a week and a half and then slowly faded. but i do still remember him having slight contamination food issues in sept, when we went on vaca. he was also quite hyper and had time issues then -- about 2 mths after the intense time. so, for us, his herx-type was contamination and neuro/mental issues. he has never had aches/pains and had headache and fatigue only at onset and up til 6 mths after -- 1 year before this reaction. never during treatment for TBI and other infections. i think a herx can be individual to the person, their general state and what bugs they are fighting and can last varying amounts of time. i think around then, i also stopped with a log for that same reason. perhaps you could keep a different log of good or surprising things that you see and see if those increase rather than noting all the troublesome things and looking for decreases -- ?

can you check out what other types of programs there may be in your area that would be challenging for her that would not be the direct school honors program? JHU (i know!) has a 'center for talented youth' program that if you qualify, you can take honors classes (rather expensive) online and there are family activities(not so bad but a still little pricey) that are exciting field trips. do a google search -- i believe you could nominate her yourself. perhaps a field trip would inspire her to do an in-depth research project. ds9 is in it for verbal. he didn't take the classes this spring but read the books on the reading list that were not books i had heard of and wouldn't have suggested for him. something like that may be able to provided you some structure to challenge her but in a looser manner. there are also "advanced" workbooks you can get at bookstores that are geared to challenging an advanced student but not jumping too far ahead that they don't get it. i am trying to check out listening programs for ds6 and a line of referrals has led me to a tutoring company. i wonder if a tutoring company could be helpful -- usually they're used for those having trouble, but i wonder if they may be able to provide something for you - ? i know not really what you're looking for, but just some other ideas to help her stay challenged.