smartyjones

there is a school of thought that many - perhaps more often than bacterial - sinus infections/problems may be caused by fungus. it is possible to harbor both strep and fungus, so - he could be a strep carrier but the sinus problem could be caused by fungus, not strep. not sure that is your problem but just wanted to throw it out there as if you wanted to investigate. good luck.

to check other titers is it just blood tests that the ped orders, like ASO? is there any problems with peds ordering that? thanks.

about a year ago, i spoke with the assistant of a rather prominent crtic in the field. we DID NOT go for an appt and we DID NOT speak to the dr. himself, so this WAS NOT directly from the dr . . . i was told he believes the science does not appropriately support the pandas theory. just my opinion -- i think most think it's a rather rare condition -- with which i compeletly do NOT agree. other drs -- including our ped, whom i really like but am not relying on to treat pandas -- believe it can be brought on by strep and other infections but now that it is here, you treat what you see. this is simply symptom management without treating root causes -- just what you say treating WITH but not FOR. but, i also believe symptom management vs. root cause is a major problem with our health care in general, not limited to pandas.

sptcmom -- can you tell me what the RLS appeared to be to you? i ask b/c my son still seems to be going through some type of herx-like reaction. it was wicked a few weeks ago with intense contamination OCD we've never seen before. the worst of that (complete non-eating) seemed to go away as strangely as it came. he seems to be doing some sort of cycling of behaviors - but seems to have some more insight into them - or maybe i've gotten better at dealing and trying to uncover. the past few days, he's been kicking my seat in the car. this was one of his troublesome behaviors at onset. today he said he had to do it b/c he had to stretch his legs. it's one of those things where you question if it's obnoxious behavior or what's at the root of it. it doesn't so much seem like a tic or complusion, but he keeps doing it. could it be some type of RLS that sitting in the car seat bothers him? thanks for thoughts.

i did hear dr. k say at the OCD conference that it really doesn't matter what form of OCD manifests. . . but i still wonder about the 'cluster' of symptoms that some kids seem to have and what that may mean. what you describe is similar to my son. he presented with symptoms at age 4.5, with intense school phobia, spit bubbles, shirt chewing, mood instability; inappropriate fight or flight and oppositional defiant reactions that in retrospect were most likely reactions to just right OCD; just some slight short-term possible tics. i just have to wonder b/c there does seem to often be clusters of similar symptoms and if that is due to age of onset, area of the brain infected or what. i LOVE to hear from megs mom - she is so very knowledgable and has been a great help to us!! i also found help from the anxietybc.com website. there is a parent section that explains what megs mom is talking about with the fear heirarchy and some worksheets to use. my son was not at all interested in conquering anything b/c he didn't really see it as a problem. i wasn't really able to work with him to develop anything and rewards were of absolutely no interest either. i still developed a plan and was able to work it to reach the goal with one of our main issues which was potty phobia. he generally cannot handle the ultimate goal so if we were to work with something like the dressing thing you describe -- we couldn't use the whole scenario and have him participate in making a plan. we would have to have one behavior = one reward and work it on a daily basis. (the reward was usually a sticker on a train chart and that was enough for him so it didn't have to be elaborate for us) one thing i really like about this 'mindset' is you can tailor it to what seems successful for your child and you. good luck.

interesting. . . hopkins is not a good place for pandas either! if you do somehow end up there, i'd suggest searching this site for info about some of our experiences there so you go with knowledge of what others have experienced. i think if you put in 'hopkins' or dr. singer for the search, you could turn up something. good luck.

no thoughts? i brought this back up b/c i was thinking about it in light of recent posts of testing and cross-reacting antibodies. still, with blood testing -- it's an educated guess that your detrimental symptoms are due to that particular infection b/c it shows that your immune system is/has tried to fight this certain infection and you have symptoms associated with that condition, yes?? conceivably, if you felt completely healthy with NO detrimental symptoms of anything, and were in fact, truly healthy, your blood antibody tests could show all kinds of things b/c that is the purpose of an immune system, right? buster? ' tommy, can you hear me?' -- sorry, wrong band!

is there a time limit to finish a posting? it seems many times, i have lost a post or PM and i don't understand why. have i exceeding some time limit? thanks.

fixit - i'm not sure if this will be helpful for you or not b/c i know you are stressed about what decisions to make with meds. . . i very much fluxuate in my ability to calmly, rationally attempt to see what my son is thinking b/c it is so frustrating to be a part of at times. much of my son's issues are around ODD behaviors. i think this is what is seen on the surface. i believe what is underneath is heart-breaking. he can be controlling of his brother. i believe someone (LLMD-?) posted recently that she learned at the OCD conference of a child who was controlling of his sibling b/c he had thoughts that if she did certain things she would die. recently, i believe my son had an intense herx-like reaction to an anti-viral which resulted in textbook, contamination food issues. i believe he was thinking he would get very ill and/or die if he ate something that had touched anything else - anything - like the inside of the food wrapper itself. i think this also transferred to anyone else eating something someone else had touched - even the outside of the container. so -- the behavior appeared to be a spoiled brat freaking out b/c someone was going to eat something that he rejected for no reason at all. however, i believe he was petrified something bad would happen to that person for eating that. luckily for us, that was a short-lived scenario. most of his OCD seems to be/have been in the 'just right' area. it has taken, and still takes, much for me to understand what this means. he does not seem to have complicated webs of thoughts like i just explained, that is generally thought of as OCD. it's just not the way it should be but it still can produce the same intense reaction as if someone were going to die. to others, it appears that he just wants his own way just because he does and is being a brat. perhaps the name tag thing is along these lines - ? for whatever reason, maybe one he does not even know, the name tag was troublesome. no warnings or rational thoughts can compete with the idea in his mind that it's just not right. therefore, he just can't comply with what the teacher wants. it's not that he doesn't want to comply, he really can't. at the OCD conference, someone spoke about this -- how can the child comply with your rules when they have so many of their own rules and regulations that govern them, and their's take precedence -- not so much by their choice, but by an irrational need. yes, the key is medical treatment to make it better. but, i've found that i need many coping mechanisms also. we use the repeating from the explosive child that seems to be helpful. sometimes, it forces my son to reevaluate and see that what he thought was so very important, really has no basis. we seem to have gotten to the point where he can tell me, "there's no reason", "there's a reason but i can't explain it", "there's a reason that no one can ever, ever know"(during the most traumatic time). so that seems to help me gauge where he's at and have some level of understanding for it. good luck!

what conference are you referring to?

i think the allergy sounds very plausible . . . i personally get migraine headaches with aura. it's been very good for me this year, but the past couple were bad. it did seem that i had more trouble in the spring and fall. i began searching homeopathic remedies for migraine and interestingly, many of them were also remedies commonly also used for sinus issues. when is your son's birthday? i have a friend who prescribes to a theory - there are books written about this, i could find more info if you're interested -- in that a child experiences levels of growth somehow related to a time frame from their birthday - maybe it's like near the 6 month mark or something. these stages of development can result in presentation of difficult behaviors or attitudes. she realy believes that she has tracked and seen this is her kids that any issues they may have do seem to follow some type of pattern of development. maybe it could be that he is following something like this but it is more pronounced b/c of pandas? i don't know -- just made me think of my friend's theory.

SF mom - what time is that appointment -- i'm anxious to hear about it!

not so much the question you are asking but . . . are you familiar with the Living Values Activities series? i just found this book at the library - we are going to be doing some homeschooling b/c we are moving and it hasn't worked out for the beginning of school so to keep transitions to a minimum. the book i have is for kids 3-7, but they also have one for kids 8-14 and then young adults. we've only done a few exercises - the first section is on "peace", which is quite apropos for our house lately. even my 8 year old is enjoying the lessons that are a little corny - songs of peaceful stars etc. i have never been able to work with pandas son, 6, on calming exercises for anxiety -- ie. like suggested in tamar chansky's books. i think b/c the focus has been on him personally and it's approached that these are things to do when he is feeling fill-in-the-blank. however, he is loving these calming visualization exercises - focusing on being quiet like the stars and visualizing a peaceful garden with a swing set. . . the other day he said, 'can we do a peace lesson today?' by all means, yes!! it may be a way to incorporate some quick exercises to help work with the kids that isn't the normal focus of the goals of the RE.

[quote name='faith' date='08 August 2010 - 01:21 PM' timestamp='1281288070' post='78871'. but for now I'm sticking to the conclusion that probiotics, at least at high doses, seemed to contribute spiking of vocal tics in my guy. I am wondering if 'boosting' my son's immune system just isn't right for him.......... faith -- i certainly have no answers for you - sorry -- could it be that you are correct that the probiotics are at least part of the problem -- what if that high level of probiotics is killing yeast and the reactions you are seeing are herx to the dying yeast? does the DAN have an opinion? i don't know -- very hard to tell if the increase in symptoms are a good thing as in short-term herx aiding in healing or bad thing as problematic for the system.

Wendy -- is one of those children the one you've written about before with ASO of 898 and diagnosed as RF? is that child now confirmed Lyme? thanks.

so SF mom - just curious - is this a new stance for you? when you were doing ivig, were you going on an auto-immune philosophy? are you continuing ivig presently while investigating lyme? please, not at all to provoke -- i'm very interested in your experience and knowledge.

i'm trying to make sure i understand blood antibody tests. i'd appreciate any comments. when we do blood tests for infections, we are testing for the presence of immune antibodies against that particular infection, yes? so if you have a properly functioning immune system, you would possibly have antibodies in your blood to anything you have ever been exposed to, right? even things that may not have ever caused a clinical problem for you? because that's why we have an immune system - to fight off things that may cause problems, right? this is the whole reason that we immunize, right? exposing the body to a small amount of an infectious agent to allow it to build up antibodies in case it is exposed, it will already know how to make those antibodies? in determining immune dsyfunction, they re-immunize, therefore knowingly expose to an agent, and then test to see if the body produces antibodies to that agent? if not, it's determined the body has a dsyfunction? certain antibodies have certain lives, right? and with some, it can be determined whether it is a current infection or a past one, right? so, generally, if you have clinical symptoms of some disorder or infection, a blood test is an assumptive connection that that those antibodies are fighting an infection that is causing the clinical symptoms, right? albeit, an educated assumption -- but still an assumption, yes? if you were to run blood tests for infections for the sake of interest or research, it only shows that you have those antibodies and have been exposed to that virus/bacteria but doesn't really ever show that that particular infection has caused you negative clinical symptoms. is that correct? a throat culture or CSF culture, looks for the presence of the actual bacteria, right? on a different note, if you have had lyme in your life, but have treatment -- will you always test on a lyme antibody test? thanks for any thoughts!

dut -- there is also good info on that site about separation anxiety. that site is run by an anxiety clinic dealing with "normal" anxiety -- no mention of infectious triggers but i believe many of the coping skills are helpful. i absolutely believe the medical issues for our kids are foremost in importance of being addressed. additionally, we need day-to-day coping skills for us and them. i'd say most of my son's improvements have almost just happened -- my dh and i look at each other -- "did he just go to the potty on his own with no tantrum?" "was he really that relaxed when he discovered i put away the legos?" -- i think that is due to a medical influence on brain function. recently, intense food contamination issues that just appeared and then just seemed to disappear. we've also had great strides in conquering potty phobia with desensitization. and with school phobia issues. i think this is breaking the bad habits that have come out of intense fears from an exacerbation. i believe those issues are best worked on when out of exacerbation. while in it, i don't think it's so helpful and just accomodating may be a better, albeit possibily adding to future trouble, coping choice. of course, another million dollar question - when are you accomodating unnecessarily and when is it necessary. that said, you can maybe 'test' the exacerbation with the mention of something new and see how she receives it. i do have a new found credence in the fact of plain old psychology that something that starts as a physical issue may morph into other things not really related to the initial cause. i'm kind of babbling with that -- but ds was having a herx-like reaction last week that resulted in severe contamination fears and not eating. he's only 40 lbs to begin with -- after a few days of 6-8 0z of liquid and maybe 100 calories, our stress level of impending ER IV also began to complicate things. it seemed so clear to me -- how it was classic, textbook, severe OCD -- i think he believed nothing could touch the food itself not even the inside of a package of individually packaged food or he would get germs, get sick and maybe die. -- that's what i've been able to surmise - there could have been more in his mind -- but if had come on more slowly how parental influence then creates other psychological issues. happily, he's back eating and we've mostly recovered from it. we went through a week of what is usually probably 6 months of how a kid might get into a problem. very odd. i was thinking about how the 'normally accepted' treatments for anorexia focus on all those other things -- like seeing what are symptoms that have arisen from the problem, but were never the real root. (of course, not for eveyone) with this, we totally accomodated - thought of ER was very scary - could they just hydrate or would we have been on psych ward? -- but also, continued trying - can you use a fork with this? etc. on day 6, he used a plastic spoon individually wrapped for raw muffin batter , day 8 he ate like a dog off tin-foil covering the plate. each day was an improvement and yesterday ate french fries with his hands. not totally back to normal but getting there. very odd. i believe it's all related to this herx and problems and improvement not at all due to anything we've done or not done. i think you can attempt to conquer the fear issues even if you don't think she's totally out of exacerbation -- just being sure to have rather low expectations and ideas of success. every little movement from where you are is a success. if there's no movement, is not deflating, just another step in the process. or a realization that it's not the right time. you can do it in baby steps. perhaps, with a sleeping bag next to your bed? have you tried that? then slowly moving the sleeping bag toward her room? i can't remember the real name for phobia conquering -- there's the sink or swim method or the desensitization method. i think sink or swim can work and if done properly, can be effective. however, i think it's too difficult for a parent to endure. also, then to the initial question in this post -- is that anxiety worsening the cycle of physical anxiety causes? your sleepness nights and loads of crying is the sink or swim method. perhaps that could be the guide -- one small comfortable step toward the ultimate goal. maybe you have a night where everyone is on the floor -- like a slumber party - and then you alternate who gets the bed and then you move someone toward the door. think about what you think might work in your life. i've found it to be helpful that then we're working toward something - even if slowly - than being held hostage to it all.

peg -- the info on that site is great, but there is a lot! i'm sure you'll find it interesting, but it will take a while to go through. you could do a search for the items i was mentioning to give you a framework and then go back later. the list is a "fear ladder". the thermometer is a "fear thermometer". there is a page of "chester the cat" that describes how anxiety feels to a cat - silly but cute. and there is a page of "talking to your child about anxiety" -- it likens it to reality situations of coming upon a bear and a smoke alarm. my kids have always done better with explanations or stories that are not really about them personally. i realize my kids are younger -- but it may give you ideas and then you can adapt it. keep me posted on how it's going.

have you ever checked out the website anxietybc.com? i haven't been there in a while but used their materials in helping my ds get over potty phobia. -- uh, i believe it was 59 days or maybe 79 -- whatever, it seemed like an eternity at the time, but now i can't even properly remember it. there are charts and graphics that were so helpful. my kids loved the faces -- your daughter is older but may still like it. she can help gauge her anxiety by the faces and you work a plan of what you will do each time -- 1, watch elevator for 5 minutes; 2, push button; 3, get in but don't ride. whatever she can handle -- a little more each time. if she can't do the day's step, back it down to something easier. some days, we just did yesterday's step and said we'd move on tomorrow. it's just a system of babysteps, it sounds as if tackling an actual elevator ride is just too much for her then you get into the anxiety cycle. they have a page where you gauge the related activity and anxiety level by 1 - 10. we didn't use it that way. we used it to record the steps we were doing. my son had no interest in this goal, so he didn't share in making the steps, but was proud and happy when i wrote the day's step on the chart. for swimming fears, each of my kids helped work on the 10 steps prior to doing them. i think there is also a thermometer to rate anxiety. we used that differently too. they colored a section each time they conquered a step. i don't know how far/troublesome it is for you to get to elevators. you can even have step such as looking at picture of elevator. writing the word elevator. drawing a picutre of elevator, looking up elevators on the internet. maybe the step that day won't be moving on at that particular elevator but doing a past step at a new elevator that is somewhere near where you are going anyway on that day.

so much thanks to forjpj for organizing the Virginia group! we were at the olive garden for about 4 hours!! is anyone interesting in a Maryland group -- perhaps near Baltimore?

i've posted lately how i think my son is having a herx-like reaction and is cycling through behaviors. yesterday, was some repeating, whining, separation anxiety, and many shorti-lived upsets. at a calm moment happily doing legos, this scene popped into my head. older son much agreed. http://www.youtube.c...h?v=bbhWftjWrEE

i saw in bed, bath and beyond the other day a tick remover. it was a larger hole that you slide down and then can lift the tick off properly. i think it was under $5. not sure how well it works but may be easier than tweezers.

kimballot -- i think this is an interesting quesion. my son has been diagnosed with lyme also so - i am aware of lyme posts. perhpas a poll is in order, for those that have tested, was it positive or negative. i believe - just off the top of my head -- phillyPA is the only one on this forum i have heard of that has tested for lyme and been negative. but, i'd like to know if there were more also. most lyme drs would say that it is lyme that starts the whole mess. our dr doesn't really want to state that. my son has had multiple infections. our dr just says something along the way began the mess but thinks there's not really a way to discern which it was. not so much a point of argument on this forum -- just stating our experience and what our dr believes -- who is treating my son for these multiple infections. i would be curious the role that infectious disease affects the immune system and if what tests as immune compromised is actually the immune system trying, perhaps unsuccessfully, to fight an active infection. i admit i don't know much about immune deficiencies but wonder if that concept has been explored. just really talking off the top of my head.

not sure that i can give an opinion on your question, but just to say ... my son had high ASO and anti-DNase B, active strep infection at time of onset, 100% remission on keflex. . . AND. . . diagnosed with Lyme 9 month-ish later. i am hopeful the NIHM conferenece will be a bit of a turning point for a change from PANDAS to PITANDS. i think all the infectious components need to be addressed. i think the major drs are treating "autoimmune neurological disorder" as opposed to "associated with strep". however, i find the "infection triggered" to need much attention. we were not really looking further b/c we did have such clear strep indicators. i asked Dr. T about this and he responded that you can always do more tests, possibly find something, possibly find "false positive" (not so sure should be a reason to not test) and it is very expensive. i do agree. i also believe there can be many infections causing trouble.