smartyjones

does your doc have a theory? what are your thoughts about occult strep? ds had very high titers with onset. he had a great first response to abx, after 30 days symptoms gone but titers high. 4 mths or so later, still high titers. a year later still high. we treat with homeopathy and saw a symptoms exacerbation every time we tried to reduce his remedy for a long time. finally after a number of times and lots of time, we were able to reduce. he had not been on strep treatment for about 18 mths,. just recently had titers checked -- had not in 2 years. aso is just over the line (159); anti dnase b is low. i don't think i buy 'some kids just have high tiers'. i know a ridiculous story of a girl with strep infection in her gums with faulty dental work. high titers kept them looking. of course, i don't know so i'm not saying he does still have strep -- just my thoughts would be of occult strep.

thanks mom -- i am ALWAYS so appreciative of your wise insights and experiences! do you know how the action of an antihistamine may affect the BBB or brain tissues compared with how ibuprofen affects the same?

my guess also is that that info would not help you with insurance coverage -- i don't know that, but i guess it. i would seriously think about what you would do differently than how you are treating now or how you make treatment decisions with any knowledge of infections that tick may have and base your decision on that. if it would be very different, it may be worth testing; if not so different, money may be better spent on treatment. good luck.

i would caution you from trying culturelle and suggest you try researching strains of probioitics and possible the negative interaction for your daughter of particular strains.. of course, only my opinion -- but i tend to think it is the strain, not the company. try researching d lactate acidosis and see if that info is helpful in what your daughter experienced. my son has a negative experience with a high level probiotic -- he does fine with genestra brand HMF forte, its 10 billion -- l acidophilious, b bifidum, b animalis (formerly b. lactis). what our dr recommends, i just thought i'd get wise with a heavier one with additional strains-- it was a mistake for us. i'll disclaim that i do not use probiotics to counteract abx, nor do i use to treat yeast. it is simply part of our health maintenance program.

agghhh -- help -- this sounds great but my brain is not functioning so well . . . moved recently, many issue with house and now, dad with open heart surgery tomorrow. . . has anyone sent in ideas about BBB -- i'm not sure where to go with it but want to send something. i remain concerned about the role of viruses in PANS. i have some concerns about what an acute PANS state does to a young developing brain (along the llines of how a stroke changes/damages a brain) and the implications of how to heal that when the acute phase is over. has anyone sent in things along these lines or can help me formulate some thoughts?

my son (actually older ds -- symptomatic but not technically "diagnosed" pandas -- not symptomatic now - last year -- had SEVERE reaction to probiotics. it was a very high level, very reputable product. i do believe it had l rhamnosus in it. he had symptoms similar to kids who have trouble with probiotics who have had short bowel resections. this is over a year ago, so if you need more info, i can look it up to give you accurate info. we see an integrative MD who has us on a probiotic -- i think only lact b and one other strain. i thought we should up it and got this other product. a week or so after ds started it, he started exacerbating. due to posts here, i started putting 2 and 2 together -- actually it was a while so not so easy math. anyway, at our next appt, our dr energy tested this product and said was very bad for ds. i think it was a few weeks off, and he started losing those symptoms. one of those things that medical data exists that describes what he experienced but only in a very specific situation that he did not have. conventional medicine would likely describe as "true, true and unrelated" but there is absolutely NO doubt in my mind it was not only related but the exact cause of that trouble. younger, "pandas" son would never take that product b/c of the smell .... i think it may have turned out for the best for us. were you seeing troubles with your child or were you just curious from your reading?

i think others will chime in who are much more knowledgable than me. . . but are you aware of the research study currently underway at NIMH? http://www.clinicaltrials.gov/ct2/show/NCT01281969?term=Pediatric+Autoimmune+Neuropsychiatric+Disorders+Associated+with+Streptococcal+Infections+%28PANDAS%29+Research+Study+for+Children&rank=1 if definitlely sounds to me that you should contact them asap. good luck!

i don't really know much other than a precursory look a couple of years ago when i heard of a new center that opened in my area. i know it can be very good for certain issues -- i believe i had a diabetic aunt who used it with leg issues. i think people were having good success with lyme treatment. i seem to have a vague recollection that it may not be so good for certain infections -- the oxygen helps the infection thrive rather than helping get rid of it and i am not sure that strep may be one of them. that's all extremely vague memories on my part but i just mention it to be something to check out if your child may still have strep or have occult strep. if you go ahead with it, please report results. good luck.

i know you are in great hands with good doctors -- do they know what caused this -- just wanted to mention that a few years ago, i remember talking with a woman who had a thyroid issue -- she had always been a runner and started having spells similar while out running. i don't know any of the details but they believe it was due to the thyroid issues. can't remember if your son had issues with thyroid or not. . . yikes -- glad to hear he is doing okay now. good luck!

we have used that for quite a while -- not so much for the namesake -- we tried it as a sample in a store and ds liked the taste, so i jumped on it. i can't really say that i saw any calming effect. ds did used to have bathroom issues so we had it as part of our regime to promote regularity -- which it did well. that problem has fallen off, so so has our use of Calm -- but i did just see the remaining big jar in my cabinet and thought we should start using it again. unfortunately, i really can't say that i saw any calming effect -- he was the same whether he'd had it or not.

here's a website i've found very informative http://www.cde.state.co.us/gt/download/pdf/twiceexceptionalresourcehandbook.pdf basically 2E - Twice exceptional --refers to a child who shows exceptional talent in at least one area AND a disability in at least one area. 'twice exceptional' is the politically correct term -- i've also heard it referred to as "twice challenged" and many days i find that more appropriate. not really for the child himself but for the lack of understanding and compassion from the rest of the world -- unfortunately for us, our educational world.

did anyone attend that conference in early june, i think in northern CA that was to discuss issues of pandas and the BBB? i don't rememeber hearing anything about it. also -- i feel as if i somehow saw a link to info from the parents support meeting also i think in CA. i remember seeing it in a hotel on vaca in early june. now i can't seem to locate it. i recall it had great info i wanted to spend time with later. did i dream this? thanks!

just wanted to mention that although we are currently dealing with issues of appropriate placement and support for ds - it is correct that he needs extra support to navigate school. . . he ALSO has inappropriate anxiety issues. i definitley agree with this thought. we first have to set the environment so the reasonable anxiety is reduced but we will also have to work with the inapproriate fight or flight and i do agree that facing it and moving past it is imperative. -- it's so flipping complicated!!

one thing that was suggested to us that we didn't do for various reasons but i thought was a good idea was if you are doing abbreviated day - to start with the last class of the day and build backwards -- that way the child goes for a short time but leaves with everyone else rather than leaving on his own... and may have less anxiety b/c he knows its a short time until the natural end of the day - not just a false end of the day for just him.

we had school refusal as one of our big issues at onset duirng preschool. it has waxed and waned -- initial treatment with keflex brought 100% remission and school refusal melted away. symptoms came back and school refusal, too. the following year, kindergarten, behavioral issues and school issues but not so much school refusal. next year, 1st, was homeschool b/c trying to sell house, thought it would be short term -- was the whole year. last year, 2nd, was disastrous. began with school refusal and we did a ERP like plan of walking in -- was getting better but many problems surfacing -- spelling test anxiety, writing anxiety, thought generation anxiety. i believe these things could have been dealt with with special ed and ERP plans. school officials didnt' get it -- even though anxiey diagnosis AND pandas diagnosis. they saw a regular 7 yo who they thought was 'manipulative' and just wanted to be with his mom. they saw he was 'fine' once he got into the classroom -- they didn't get it that those were the times he allowed himself to go in to the room. a few disastrous days. was on home teaching from Nov - end. with cognitive testing, ds is the picture poster child for 2E. now, any person with common sense who looks at his profile can see school would be horrible for him -- he's 2nd grade age, math and other skills 4th grade or above, writing and working memory skills more like 1st or kindergarten. he was saying, 'eveything is too hard or too easy.' now we have something that backs up what he means. still -- i've very worried about school and how much help we will get, how much they will put him in a 'troublesome behavior' box rather than seeing it's an issue of how his brain functions. i feel he'd be better off in school with a PDD or asperger diagnosis, although those are erroneous for him. could there be something like this for your son? maybe there is something that is 'reasonable' for him to refuse school but it's gotten all mixed up with the other symptoms and became patterns? on a little of another vein -- i was recently talking with a very savvy PT who also does cranial sacral - which we did in the past with ds, i think we saw some benefit but we changed our treatment a bit -- i intended/intend to do it again, just haven't yet. when discussing ds, she said, "what happened to the working memory?". now, she's not working with ds but in hearing his story, it made sense to her, that something happened, it wasn't jsut that he has trouble with working memory. i think that's where pandas has had more of a long term effect -- kind of in the sense like a stroke may efffect function -- i think either in lack of proper development or something, that area of brain function has been effected for him . it's very odd, b/c he shows trouble with working memory in some ways -- like not able to remember his whole thought to write it down, but he can do math work in his head. the point i'm trying to make -- 'regular' expectations from a typical age appropriate classroom are a nightmare for him. could there be something like this at play for your son? all that said -- i very much feel my end goal is to provide the support he needs to get him to speed to be able to function under those 'regular' expectations without extreme accomodations. i feel he needs the support now to get there or he'll always be behind and/or in need of accomodations. 2E kids often fly under the radar b/c their strengths in some areas kind of counteract their deficits in others so they APPEAR to be age level -- however, they need extra challenge in some areas and extra support in others and they're really falling apart while it looks like they should be able but aren't trying. and a HUGE thank you to EAmom, who first ever introduced me to the concept of 2E a number of years ago!!!! and Dcmom for last year suggesting there may be more at play with ds's school anxieyt. thank you to all the wise members of this forum and Shiela for creating it!!

hmm - interesting -- i see spinach has high levels of TMG. when i was pregnant with pandas ds, i thought for sure i must be having Popeye b/c i craved so much spinach! just recently found out i have a1298c.

have you used 'what to do when you worry too much' and/or 'what to do when your brain gets stuck' by dawn huebner -- they're workbook style that are fabulous for kids.

i'm in the middle of packing to move so my brain is not so on now but. . . have you tried the approach of working with her to beat up or destroy the thoughts. we had better success with that than trying to get ds to think of something else. we'd make up scenarios where he'd destroy the thought. it seemed to give him more of a sense of power over them than thinking of something else which seems a bit too much like avoidance. ds likes baseball so it was something like imagining pitching a ball at the it and blowing it out into the outfield. i think we may have done shooting down with water guns. . . ??? i think we did something like yelling at the thoughts like 'leave me alone!!' something like that. . . it's still tough but seemed better than just trying to have better thoughts.

llm -- do you supplement copper and zinc for your son? is he deficient in both? i'm still tyring to figure out the whole zinc/copper scene. thanks.

YES! parvo -- that's it!

this is fllying by the seat of my pants 2 years later. . . the theory is that our bodies are composed of a lot of 'junk' - viruses, bacteria, etc. it is all kept in check by an intricate system of checks and balances. problems occur when things get out of balance -- like, yeast in and of itself is not a problem, it's the imbalance of yeast that becomes a problem. another thouhgt (morbidly gross, yes) is that when we die, we do not decay from the outside in, it's a process from the inside out. think of a piece of fruit -- if left alone, it's not things that act on it from the outside, it does itself in. that's what we're composed of -- enzymes, bacteria, viruses. pleo sanum goes on that theory of "down-regulating" or "up-regulating" what is out of balance and what needs to be brought back in balance.so it's not so much a theory of "riding' the body of something, more of balancing. how it determines that and does it, i don't know. please keep me informed what you decide to do -- we don't use it but i'm always interested to hear! good luck.

i'd say cytomegalovirus, whatever herpes virus you can, coxsackie virus (is that a herpes?) there's another that's on the tip of my tongue that is a commom childhood virus but i can't think iof it

we did use pleo sanum products for a while. . . i am generally into homeopathy and was searching for homeopathic answers. . . you can search some on this forum and check out http://terra-medica....-sanum-products. we were seeing one doctor who used them. . . we switched doctors after about 6 months or so b/c we began to investigate lyme and other infections. the new doctor used a different company. i do believe it is a good product, theory and company. it can be a long time treatment. for ds, he still showed trouble with strep for a year or 18 months of treatment. whenever we tried to wean him off, he showed trouble. similar to what people may experience with abx. ds does not currently show trouble with strep and is on no strep treatment. his titers were just checked and are low. that's not full treatement with pleo sanum -- about 6 mths pleo and maybe 12-18 of another product. ds is in a general good state - i think is in a very good state concerning infections but still has some 'flips' related to immune challenges (intense stress and then a body rash from sunscreen) that i think is not 'right' that i am investigating his general state of body. so -- i think we've had a an answer for strep but not to 100% health. so - it's a similar theory to abx but a different substance that has a different effect in the body. i think you just need to be prepared to possibly use it for quite some time.

i'm going to the info session tomorrow night -- let me know if anyone has thoughts of some questions

no -- i love ramblings!! where did you do the neurotransmitter tests? did you treat the high dopamine and seratonin nutritionally? what digestive enzymes do you use? i also have recenlty taken ds off gf/cf -- slowly at first but now pretty much everything.