smartyjones

not so much about contamination issues -- but more generally, where is that line between OCD and sensory issues? my son had severe contamination food issues in july -- clear severe OCD like we've never seen. usually, i don't see such an OCD link. if so, it's along the lines of 'just right' OCD. i have been wondering if it's really that or if it's really sensory. we've gotten to a good point where he can usually say, "there's a reason that no one can ever, ever know" (severe OCD), there's a reason that i dont' want to say (?), and there's no reason. he seems to be able to categorize it honestly. i've lately been thinking the 'no reason' may be sensory. when i read The Out of Sync Child, something didn't fit right -- it left me with more of a sense that that wasn't him. i've been reading a book When Labels Don't Fit by Barbara Probst. the theory is that is sensory problems really should be seen as traits with not really good or bad, just individual. but troublesome when the expectation or the environment don't fit the individual. i have found some strategies helpful, esp in the sense of time usuage -- we've been having struggles with time -- getting ready to get out of the house, coming to dinner, etc. i do think for ds, prior to pandas, i can see things that were traits but were not problematic until pandas. and, it does seem it's not so much 'too much' or 'too little' of his sensory experiences as it is problem with regulation. just in the past few days, we've seen some successes with some suggestions. perhaps that's the determination of the cause -- if the treatment helps or not? does anyone have thoughts on that line between sensory and OCD?

i certainly can only add only about 1/100 of a cent , if that -- lyme mom will have to add hers. i did recently speak with somone from igenex in person about determining when lyme is gone. he spoke way too fast and above my head -- but, yes, he did recommend the CD57 as a test when trying to discover if you're recovering. but, then when i reiterated i was talking about a child, he confirmed it would not be helpful. that's usually covered by insurance, right? i believe -- he suggested a PCR test for children -- i was a bit confused b/c my head was spinning as i was talking to him. that may be helpful in your situation to 'convince' your dh.

i'd say you could start with your dr running a western blot -- with the understanding that a neg may not mean much. our ped never ran an elisa -- he ordered the western blot as the first step. i believe there are a number of co-infections tests that are covered by insurance as well. perhaps someone knows about that.

oh Wendy -- anything you can share from that?

i think i remember Klinghardt saying in a video or in something i read -- but i disclaim that it was a while ago -- when speaking about lyme in autism, that he believes if the mom is infected, there seems to be more of a load that gets passed to the first child. so in practice, when the first child (as opposed to subsequent children) has more symptoms, there seemed to be more incident of the mom's infections also being involved and being more of a congenital issue versus the child having been infected after birth. i am curious about this b/c it's my second child who is pandas. my first child has ever-so-slight things that i often question if it's 'just normal 8 yo' or if something else. any thoughts on this?

interesting -- i haven't listened to that yet but plan to. i don't see strep listed there -- did i miss something or is that not something that she tracked? could that be included under the 2, 3 , or 4 infections but not specifically mentioned? just from my thoughts of people i have met -- strep seems common with lyme. i dont' know if that's been a studied connection or if the thought is that strep is "common" anyway or if most believe lyme makes it hard to kick other infections, strep just being one of them and not specifically studied as a "co-infection"?

awesome! i believe - but don't know b/c we don't see her -- but before Dr. L was so invovled with pandas, she specialized (and probably still does as well) in neurological headaches!

is your daughter seeing a neurologist for pandas? you may want to investigate migraine headaches with aura. when i have one, i cannot read correctly -- the words are a little off -- some blurry but not really in a straight line. there can be many strange symptoms with the aura.

i'm with you on this. for dcmom's earlier question -- which is a really good one, if lyme diagnosis makes those think the pandas was wrong -- i don't beleive for us it was wrong as much as it was incomplete. ds had clear, stong, strep indicators, classic pandas, 100% remission with abx. however, after inital relapse, not back to 100%. that's why we investigated more. i don't believe he had neuropsych lyme. was lyme brewing under the surface and strep pushed the pandas reaction? was lyme more of a silent infection and what we saw was all due to strep - lyme or not? and of course, then the infections created other deficiencies etc. would ivig or pex have remitted symtpoms and we not discover the other infections -- or could it have taken care of those infections? i now consider him pitands -- multiple causes. lyme is one, strep is one, so are a few other infections with neuro-psych symptoms as well. which one is the one that creates the troublesome symptoms? i don't know. it is one or is it the combination of a few or all? our goal now is clearing these infections and see where we end up then. obviously, our belief and hope is that will remit symptoms. but, only the future will tell. does it seem insane that he could possibly have all these infections? absolutely. how many people actually exist with infections they don't know about or don't cause problems for them? i think most of the population or a significant portion tests for HHV6, toxoplasma and CMV or EBV, right? our dr is not willing to give the cause to one either -- it's only clear somewhere along the line, he took a hit and the infections piled on one another. we're following a different path of treatment than most here -- it's clear he's still having trouble with behaviors and it seems he's cleared all infections but not strep -- although, throat culture in july and dec '09 were negative. currently awaiting titers. i know i've written this before, and momocdson is so right that it's difficult sometimes to even have people see the strep trigger but i really hope the future is testing for all these known neuro-psych triggers - and there are many known neuropsych infections! -- when someone presents with the symptoms. that's my hope for what comes from the NIH conference.

stephanie2 -- what do you know or where can you direct me about viral die-off? thanks!

i do personally know quite a bit about homeopathy and do agree with that statement. i threw those remedies as suggestions but the best suggestion is to work with someone who knows homeopathy.

not so much treatment for pandas as for others in the family. . . i have had good success with oscillocossum for flu symptoms -- sorry, i know that's spelled wrong -- it's popular - can get it usually in any grocery or drug store -- made by the company boiron. best with homeopathy to take it with first sign of symtpoms. we've had good success with hepar SC for sinus. i've also used gelsenium at the first sign of a cold -- have to catch it early with that. kali bich has been good for thick mucuous issues. there's a homeopathic remedy often recommended to also use if you choose to vaccinate (not specifically flu, any vaccinations) called thuja. homeopathic remedies are used for many conditions and what is on the vial is not necessarily it's only use. you'd have to investigate with someone who knows homeopathy or research a bit . i gave my older child thuja for pretty much all vaccs. i was lazier with younger (pandas son) and didn't hit him with it for all vaccs. he had a slight reaction to chicken pox vacc. is it related to pandas? would thuja have offered any protection? we'll never know. no flu vaccs for us.

i am sorry to add negativity to this post. . . i just want you to realize that if/when you do something like that. . . you open the door to many people to be a part of your world. i know you are asking for help in identifying strep. . . but you are also opening the door for other parents to then ask questions and have discussions with the teacher and each other about your child that may or may not be good and/or helpful. i wrote something to friends of mine that i had previously for whatever reason discussed pandas with in my son's class asking for their help on input on what they had observed about his behavior either themselves or what their children had told them. it turned bad when one of them discussed it with the teacher and she took on a different take that i was undermining or not trusting her. i was stunned one of them discussed it with her. i won't be that naive again. there wasn't anything bad in it but it took a turn i hadn't anticipated. granted -- you are talking about a different situation -- but you are involving many people, some of whom you may not really know -- i just want you to think about that. you may want to write a letter that can then be sent by the teacher or school personnel that refers to "a child" in the class and not specifically your child.

oops -- lost half my edit -- now have to go make dinner

i'm not sure where ds stands today -- months ago, we discovered many infections. he seems to be on some pattern of cycling through behaviors -- but today, i'm in state of flux if his behaviors change or my attitude and patience does -- seems very up in the air. i do admit, i haven't been charting ala buster's chart consistently. this week -- he's a bit hyper but also has a bit of a mellowness to him with upsets -- inappropriate upsets has been a major issue. he has the tendency, might yell and then it's gone where previously, could have gone on for a LONG time. anyway -- social interactions were an issue with initial presentation. last year, he had difficulty in the classroom. i think mostly b/c teacher was turning up expectations and then troublesome behaviors would surface -- lack of focus, annoying others, alpha-male stuff, etc. yesterday, i saw him do something that i usually don't see but seemed very asperberger-like. we met some old friends at the playground -- 2 girls, he's in-between ages -- so first, not the best playmates. anyway -- he kept singing to himself names of places and things we had done on vacation recently. i think he may have wanted to tell them about it but this was what he was doing. it wasn't troublesome but the other mom did also notice he was repetively singing these places anad it seemed a bit odd. he could have just been thinking about it and singing and it's not a big deal. i do feel so worn from watching and assessing his every action and word - esp since July when he went into a tailspin herx-like reaction. it's seemed since, he has different behaviors each week. i was hoping there was an end but we seem to be plodding along with a new or comeback thing each week. i am extremely frustrated with the journey we've had the past two years from the psychological/psychiatric realm. we haven't really found any real help there. while i know the medical issues are the root, i am also a big advocate of coping skills to help get through the day. a "session" isn't so much help b/c he may not display anything there -- i really need some type of therapist with him all day to understand something when it arises. right now, we're homeschooling b/c we're in the process of moving - i think he really needs to be in school for some help there. i am thinking we should go back to the initial behavioral therapist who suggested pandas. she didn't even know it that well -- just said some of what i described sounded OCD, but he was so young; would think a story from school sounded asperberger, then he'd totally interact with her. she couldn't really peg him and remembered she heard something about pandas. however, we didn't stay with her b/c 1 -- we were seeking med intervention and 2 -- i don't know that she seemed to come up with strategy for us. she holds many asperberger groups, which i don't think is where he belongs -- but we seem to need something. previous to onset, he had nothing that would signal asperbergers. as a young child, he was very into older brother and his friends, but got his own once he went to school. he had initially taken a long time to warm up to preschool, certainly longer than most, but once he did, he was fine. he had many friends who really liked him and he, they. at the OCD conference, when asked, i believe Dr. Latimer said ERP, etc is not part of her plan -- which makes sense b/c she is a medical dr. i don't know if that means she doesn't even recommend seeking those types of services. i'd be curious what Dr. Leckman's take is on coping services and other interventions when you know the cause is pandas. any thoughts or suggestions? thanks!

so mom -- am i correct in understanding your first step down was cutting the dose in half?

pacificmama -- you think the protocol itself is dangerous? or is it that it doesn't properly address the lyme bacteria and that's what you see is dangerous?

i will disclaim that i have never attempted to reach dr. klinghardt personally so i don't really know of what you speak of that. i just read a post from pacificmama on another thread and will say i agree with her viewpoints concerning dr. klinghardt. i came across his info over a year ago when we were first with one of our previous drs. (i still very much respect this dr, he referred us to our currect to check for other infections). when i brought up klinghardt, he was excited, he'd gone to many trainings and knew him personally. i don't want to offend you,. .. but i wonder if the wierdness lies with the RN and practice you are seeing, more so than klinghardt. perhaps they have trouble reaching and are uptight about it. you mention you have taken the advise that works for you. . . .is the practice open to this. just my opinion, but the drs that have been the most helpful are those that have had respect for us, our opinions and what we believe sits well with us. of course, i'm asking their opininon, so they expect i will take it. . . but are open to discuss. when ds first presented, we were with a horrible ped practice. they were offended that i didn't just blindly follow their directives. i think that shows a lot in and of itself.

that my dear watson is the question!! yes, so very hard. number one -- i'd say be in close contact with your treating physician. ds went through what we believe to be a herx like reaction in July with things we'd never seen before -- severe OCD contamination resulting in not eating or drinking. we were in close contact with his dr who was relaxed and sure it was a herx. at the same time, he was adamant that if we needed to do something for his well-being (ER IV) then we should take short-term action when necessary. many treatments (i believe what you are following for lyme) are long-term to see success in healing. after the week or so of intense trouble, he cycled through troublesome behaviors. and to some extent, still is -- 10 weeks-ish later. we stay in close contact with dr and his office. from our experience, he seeemed to cylce through behaviors with a five day to week time frame for specific behaviors -- like, food issues; then silly rhyming; then inappropriate upsets; (i don't have my charts, just some thoughts from memory). now, he's rather hyper with short attention to tasks i ask of him. that's been a few weeks. during intense time, dh was quite freaked out and since has often thought he's downsliding. we also saw local ped (open to pandas but not so knowledgable) just to be set up if we had to go to ER. when i ask dh to really think about it, he agrees it does seem to be cycling of behaviors that come and go. also, ds has always had issues with peeing -- needing me to be in the room, needing help, etc. now, he's just taking care of things by himself. SO -- i'd say, keep in very close contact with dr's office; evaluate if anything at all has improved; closely watch/chart to see if troublesome things come and go. i believe i recently read pain behind the eye being associated with bartonella or babesia. ds tested for no co-infections. about 6 mths before pandas onset, he complained of eye pain. we'd thought this was likely sinus that began and continued until pandas onset. i found that interesting b/c i'd never seen that on co-infection list before.

i do not know how dr. Leckman treats. . . but i did meet him at the OCD conference, spoke with him and later e-mailed him. i was so very impressed with him and his compassion for pandas kids and their parents. he was very responsive by e-mail. i would definitely suggest contacting him, saying you were referred to him and asking for his suggestions. please keep us posted if you do.

gatitio so sorry to hear your troubles. unfortunately, i don't really have words of wisdom for you other than to say i feel your pain. in july, due to a herx-like reaction to an anti-viral we added, ds flew into contamination fear severe crisis and was not eating or drinking. he had never exhibited this before. each day, we were one step away from ER IV hydration - he somehow managed the bare minimum fluid to avoid this. a few ounces of fluid in the middle of July and he's only 40 lbs to begin with, so it was extrememly frightening. it lasted about a week. i think we saw in a kind of fast forward what many experience for months or years. i don't know if this will be helpful but for ds, i believe it was some sort of fear of himself dying or anyone else dying if anything touched the food before eating -- i mean anything -- the inside of a wrapper of packaged food -- which is next to impossible. possibly also some thought that he/they deserved to die b/c of it. then, he would freak out. compounding it that he really was starving and really wanted to eat, but then couldn't. of course, there was no reasoning with this. we got some bacon into him b/c we went to our whole foods which has a sink in the cafe and he ate it with horrible manners --holding it up high and lowering it into his open mouth like a baby bird. other times, he ate off a plate like a dog. the most he ate that week was raw muffin batter out of muffin tins. he had to put a straw in asceptic packaged silk himself, but if his hand touched the package, it would be ruined. of course, he so wanted to drink it and was spastically putting the straw in, so many were ruined. then no one else could drink it either. if anything touched or hit anything else -- it could cause an intense freak-out. we found some success with individual packaged silverware that he unwrapped right before eating. food on tin foil was also acceptable -- plates were not. later, just washed plates from the dishwasher that he ever-so-carefully took out with 2 fingers lightly touching. tubes of yogurt could be acceptable if he took them carefully out of the carton w/o touching the sides. i think he didn't realize it touched anything. he was neg on a culture. i think he just pulled himself out of it -- all the more for me thinking it was a herx-like reaction. our integrative MD is sure this was the reason and thinks this type of OCD is something that would have eventually surfaced for him. ds was also diagnosed with strep, lyme, no coinfections, CMV, toxoplasma gondii. i know your posts said you were in much contact with many drs. could the food issues be a type of herx? megs mom is so very knowledgeable about OCD so her contact may provide good help. good luck.

have you heard of the reason behind this? i've heard it often but never heard the reason. is certain bacteria active after some time of rest? so odd!

we're in the process of moving and find ourselves in limbo and making the least worst decisions as opposed to the best decisions. trying to make the best of it, but it's still a terrible time to sell a house. at any rate. . . ds8 and ds6 did not return to montessori school they had been in -- ds6 bad experience in the end, next teacher would have been head-to-head battle; both would have been in same class for 1/2 day = not good for either( i do realize the irony that now they're together all the time); ds8 capping out socially b/c getting very small peer group. we've always known we'd need to move at some time b/c not good schools. so -- here we are with short-term (?!) homeschooling. actually, i think it's good for ds6, pandas, b/c of trouble last year most likely resulting from focus trouble. ds8 has always done extremely well in school and socially. ds6, although doing better than herx issues of summer, is having troubles with focus. he can do well if i am right with him, working with him. he does great with reading by self and some other activities if he is engaged. it is often troublesome to get him engaged if he's not into it w/o constant interaction from me. i don't think i'd find this so difficult if it were just he and i. as an example -- i think he doesn't have the correct filters -- the other day at the park, he's playing a loud, raucous game on the play equipment with others. one girl, from quite some ways away, tells her mom she has to pee. her mom, closer to ds than the girl but still a ways, says, 'okay, you have to pee.'. i'd think the ones playing wouldn't have registered this and maybe noticed they were gone at some point and wondered where they were. ds, as continuing to run, sings out -- 'you have to pee, okay, pee like a bee." it's just an example of how i think everything and anything flows through his mind. ds8 is used to environment with many kids doing many different things -- constant buzz of activity and noise. he does well with focus and can pull in and out -- such as working on something, pausing to laugh and sing that ridiculous mcdonalds fish song, then back to work. however, ds6 can't. so then, i have to deal with the fish song , with ds totally off track. i'm trying to make the best of this for them, have it be somewhat fun (certainly not ds8's ideal) and don't want to send him off to be by himself all the time. i do realize he can't have an adult's perspective on how he gets ds6 so off-track. i've tried to explain, he seems to somewhat get it -- but not really enough. any advice? thanks.

are you familiar with an organization called, i think, "the council of parent attorneys and advocates" -- i believe in Baltimore? i don't know too much about it, came across it in an article about kids with lyme and school issues. it's one of those things on my list to find out more about when i have time. . . try a google and then let me know if you can't find it and i can get more info.

i broke my ankle about 3 years ago -- a stress fracture I didn't know I had, running a 5K, stepped down and ankle hurt. i'd never broken a bone before and so never imagined it was broken so kept running to finish the race. i turned the corner to the end and it cracked, about 100 feet from the finish line. it still pains me to remember sitting in the grass watching the time clock run. anyway - had multiple CT scans of the ankle. at the time, i was following dr. andrew weil. i think he advocates high (at least 1,000) vitamin C for a few days or week before and after raditation tests. this was some time ago, so could be not remembering it well. when ds had CTs a few years ago, i dosed him with vit C before and after.