smartyjones

i have been working with non-pharmaceutical remedies with my son. we were using a few products from Pleo Sanum. i liked these products - mainly targeted at strep and cell wall deficient bacteria. try looking up biomedicine.com. basically, the theory is that our bodies are made up of many viruses, bacteria, etc. the problem isn't that we have these, it's that they're not in balance. these remedies work to bring the body back into a symbiotic relationship, rather than trying to completely eradicate the bacteria. kind of like the theory that once you have a herpes virus, you always have it, but it can be more or less of a problem. we used pleo sanum for about 6 months. after a month or so, i thought i saw improvement, then he had a flu in the fall and relapsed. during that time, he was negative for strep. i'm not sure what to say about the success of pleo sanum. did the remedies keep the strep away? would he have been worse without the remedies? were the remedies doing nothing? would he have been worse with nothing? would he have been better on abx? were the remedies working for strep but lyme was troublesome? no way to be sure. my son seemed to be doing 'okay' - not in crisis, functioning fairly well at home, mixed at school - but not to what i feel is a good state of health. he seemed to just have a collection of good and bad days rather than be on a healing path. i spoke with our dr about the possibility of lyme, which i didn't think he had b/c he had a completely non-reactive western blot and doesn't have any lyme symptoms that are not cross-over pandas symptoms. he referred us to another dr who is more versed in lyme. this dr does believe my son has lyme as well as toxoplasma gondii infection - which has received recent press as being implicated in schizophrenia and ocd. he is treating him with a number of products - many from celletech. you can look up celletech.com. only been on these about 2 weeks. when i first joined this forum, i posted a number of times asking how parents were judging their treatments. overwhelmingly, it was the clinical picture of their child. i'm fairly familiar with mainstream alternative medicine and both these companies were completely new to me. i'm not sure where this new protocol will bring us. hopefully, somewhere good b/c we're targeting a couple other things than strep that seem to be a problem for him. really, it seems only time will tell. good luck.

i am certainly not so knowledgable on lyme -- we just went to a new dr who is an anethesiologist by day and an aricular medicine dr by night. he believes my son to have lyme, no coinfections and toxoplasma gondii infection, as well as few other lower level issues. last june, he had a completely negative western blot. i believe the lyme experts believe the lyme bacteria is so insidious it takes over and makes it difficult to fight other infections, such as strep. there's some lyme/parasite connection but i don't understand it - perhaps the ticks have the parasites as well as the bacteria? as we've discussed previously, my son does not have overt tics - now that i know more about tics, he has had some very slight finger movements only on an occasional basis that could be tics. the 'really sick' part -- had it not been for an astute behavior therapist, we would have spent the past 18 months at various behaviorists, psychologists, psyciatrists - probably suggesting ssri - because they started to in the beginning - all working from a standpoint of behaviorally treating. he did have easily tired (although not excessive), dark circles, was low weight, slipping into 5-10 %ile (although he's small - small wrists, etc). i believe this to be part of being sick but the drs all just shrugged off these symptoms. this new dr began testing him and said "his brain is showing stress -- very stressed -- very,very stressed". so i think "really sick" is up for very much interpretation. when you did muscle testing for your son, did you have him tested for lyme and the coinfections? i know you think that wasn't so helpful. i'm curious what he was tested for.

meg's mom - has your daughter been diagnosed with lyme or were you reading this for knowledge?

really interesting! i had recently tried adding vit D for my son. i thought i had to be imagining it but it did seem like i noted something of a ramp up in relation to when i gave it and had questioned myself if the vit D could be causing it. it seemed a quick reaction like you'd see a reaction to food or dye and i thought it really couldn't be the vit D, but it did seem to follow when i gave it. elizabeth - i'm not sure i knew your kids had lyme co-infections. can you tell me more about that?

andrea - i'm not saying this is the same for your son but just wanted to tell you our experience. my son presented with pandas behaviors Oct/Nov '08. he had high titers and + throat culture 12/08. he's had trouble with some abx - at the time i thought penicillin - so they put him on a 5-day course of azith in 1/09. it was terrible. similar behaviors to what you describe and increase in separation anxiety. he was much better after he finished the abx. we switched peds and the new ped put him on 30-days of keflex in 2/09. all behaviors resolved in about 3 days and he was back to normal. he had a relapse about 4-5 weeks off the keflex, went back on and we did see improvement but not as dramatic. i know most see improvement with azith. could it have been a worse before better situation? i don't know. all i know is i was extremely happy to get him off it and am not sure under what circumstances i'd ever have him on it again. i'm not sure why you'd see good results once and not the second time if it was a bad reaction to the abx. good luck.

i have not yet read the book but know of it. i just wanted to add -- i had believed my son does hit the mark completely for pandas - fit dr t's type 1 completely with behaviors, high titers, positive culture, CT scan showing infected sinuses, 100% remission with first abx. he had a western blot last june that was completely non-reactive. when i've looked up lyme symptoms, he doesn't have any that are not also pandas symptoms. he had an exacerbation in the fall with a flu and in january, i thought although he's not in crisis, he's not healthy either. he seemed to just have a collection of good and bad days. i spoke to our dr about lyme and he referred us to another dr. 2 weeks ago we saw him and he said based on what he's hearing, he would think he has lyme. based on the testing he does, he tested positive for lyme and toxoplasma gondii (there's some lyme-parasite connection that i don't understand). we'll see where this ends up and if he seems to become healthier with the lyme treatment. i was really surprised b/c he fit for strep so completely and i was putting faith the western blot, b/c it was totally non-reactive. now could the lyme be the overriding root cause, making it possible for the strep to be so troubling also? i'm not sure how it all fits with the antibodies and brain interaction -- but no one else seems to be sure either. we do live in an lyme epidemic area - maryland - and the dr. said he believes "1/2 of the people in front of you have lyme whether they know it or not." thanks, llm, for reminding me that i've got to get that book!

rita - can you explain what you mean by that? mati's mom - sorry to hear he's having those thoughts - hopefully, that will help!

my older non-pandas son has a slight cavity. they are going to put a "sealant" on it - still have to drill, so i'm not sure what's the difference btwn that and a "filling". i still have to research. i discussed that i did not want mercury. he said they don't generally use it but the dental profession does not believe it is troublesome. i don't care b/c i know people i trust who believe it's a problem and it's enough for me that there is some controversy to just avoid it. i will do more research, but does anyone have opinions about fillings and sealants? thanks.

amy - i'm glad to hear you've been enjoying a good remission! it's sounds to me that these could very well be symptoms - just not typical symptoms of strep -- we all know that's the thing - most of our kids do not react typically to strep! i know it sounds hard b/c she hates the culture, but i'd advise to do it. good luck.

tylermom i can't answer a lot for you b/c my son doesn't have tics - just extreme behaviors. he had a positive rapid strep at 22 months - only tested b/c his older brother was positive and then he threw up. otherwise, we would have maybe never known of that strep. he presented extreme behaviors and a therapist suggested pandas. that's the only reason we did titers and then culture. we could have tried to treat him behaviorally for years never having known anything about the positive strep, high titers, or sinus infection. so, he was having a serious infection that we knew nothing about b/c he didn't have 'typical' symptoms. i really wonder how many kids have 'behavior problems' that are infection triggered.

mom - i don't want to freak you out but my son is one whose had high titers and i think your son's dnase b is extremely high. i think you need to get with someone who understands pandas to evaluate. i believe most are doing phone consults - you could start there. i also believe there is a strong genetic link in our family so if you have a nephew diagnosed with pandas, to me, that is very suspect. my son's aso was 898 at time of initial onset - well, a few months after when we finally tested. his ped blew it off. we switched peds and the new one said, "you don't get an aso that high over night". he did a ct scan of his sinuses and all 6 cavities were infected. he'd had a strange eye ache 9 months before that i believe to have been sinus trouble and strep 2 years earlier. i believe he probably never really kicked that initial strep infection. he had a neg culture one time during those years when he was reacting very extremely to potty training and the dr thought his throat looked like strep. as far as your husband being an MD, my dad is also. he just kind of shrugged his shoulders and said, "who knows - we don't really test people's strep titers - who knows what any of our's would be." i think you really need to consult with a pandas expert - it's just kind of out of the realm of experience for drs who are not familiar with it. good luck.

really interesting about the specific strange behaviors. when we went to the alternative practicioner last week, he had a long questionairre about behaviors. one of them was "destroys things with feet". my son doesn't necessarily 'destroy' things, but he does often put his feet on/in things, much more often in exacerbation. like game boxes, steps on books, slides around on coats or anything that may have dropped on the floor -- the sliding around thing drives me crazy! i'll have to ask next time why that's on there - if it's sensory or what.

my son had extreme behaviors in oct/nov '08 at age 4.5. most other people had explanations for -- "i was babysitting my friend's baby", "he's just a boy", "he's testing" -- no, he's whacked and there's got to be a better reason! my favor was his ped "i think you'll find the strep and the behavoirs are not related" -- active strep culture, ASO 898. he had a strong cognitive inflexibility issue at my cousin's wedding the prior july on a trip across country. looking back, i know i described him as "more tantrum prone than most" and said he "had a defiant streak". i now believe that is all related, it just was mild and occasional and easily seen as normal 2, 3 or 4 year old behavior.

my son has had 2 CBCs -- one when all began and titers were raised, + strep culture; the other 6 mths later, after 1 30-day course keflex with complete remission, relapse when off, another 30-day course, mild remission -- improvement but maybe 90% -- all values were within normal ranges but there were some differences. dec '08 blood work neutrophils 60%, lymphocytes 25%; jun '09 neutrophils 43%, lymphocytes 42%. i can't remember now what it means - bacterial vs. viral - ?? i do remember that through my research, it seemed the dec'08, prior to treatment, seemed those values were healthier ratios than the june '09, after treatment, where they are more similar values --?? buster -- can you elaborate about what you said about parasites? thanks.

so the million dollar question - maybe with all treatments but seemingly with alternative -- how do you know if it's a herxheimer reaction or if it's worsening of symptoms?

i'm so upset about something and was hoping to get some feedback on it. as if i don't have enough with pandas son and working to get our house on the market. . . i wrote last week that we had a terrible conference at school. i was upset the teacher hadn't discussed this earlier but was really shelving that b/c my main concern was how ds5 is doing in school. i sent an e-mail to parents from the class that are friends (8 people) and i have previously discussed his behavior and health with asking for feedback from either their personal observations when they've been in the class or stories from their children that may be helpful in us helping him function better. i did not mention anything negative about the teacher or even the fact i was annoyed she hadn't discussed this earlier. the next night there was a school fundraiser event i did not attend. apparently, one of my friends who received the e-mail discussed it with the teacher - i don't know who or in what attitude. still not upset about this b/c they could have just been concerned or concerned about how my son is interacting with their child in the class. both seem okay to me. then - the teacher approached another friend and asked if she had received an e-mail from me and what the content was and if she would forward it to her. my friend was aghast at what she believed this to be so inappropriate. she is the one who told me. i set up a meeting with the teacher to discuss this e-mail and ensure she knew my intent. i offered that i could give her a copy. she had already read it!!! i don't know how many people she solicited to get a copy and don't know who sent it to her. the e-mail was fine and i don't care that she saw the content. i am so upset with whoever forwarded it to her b/c obviously since she didn't get it in the first place, it wasn't intended for her. and so upset that she solicited how ever many people to get it. she could have gone back to the initial person who told her or asked others - i don't know. i don't want to further discuss it with teacher b/c i just want to get through the next few months with the least detriment to him. she's already understandably annoyed with his behavior. i will discuss it with the administration after the school year. i can't even believe how upset about this i am. aside from ds's pandas, i don't think i've been this upset in a long time - or this mad at actions of other people. am i just being a baby b/c i have too much stress? does anyone have ideas to help me get over this?

we all have similarities and differences in our struggles with this disease/disorder - whatever we call it. i've felt such help, education, hope and comraderie from this forum. we have been following a different path than most in treatment. my son's symptoms are almost purely behavioral. we had been using a homeopathic protocol similar in theroy to abx. i've thought i've seen some good results. he had a flu around Thanksgiving and had an exacerbation. in january, i spoke with our dr and said i wasn't sure i felt he was on a good healing path - as i looked over past notes, he seemed okay (not in crisis) but to just be having a collection of good days and bad days. he recommended another dr who does auricular therapy (a type of ear acupuncture and something similar to muscle testing). my son seemed to really be improving since january - a clear reduction on buster's chart from the teens in january to 6s to recently 2-4s. last week, we had a terrible school conference where i learned he is very out-of-sync at school. he seems to have some regressive behaviors and irritabilty this week. (he's been in a change of medication for 2 weeks) yesterday, we saw the auricular guy - he's a practicing anesthesiologist with a side private practice. as we spoke about ds's behaviors, i brought up the concept of possible lyme. he said given his behaviors, lyme is likely. he did the testing that he does and this is what he came up with. this is a different type of 'testing' but those that believe it, believe it just as other's believe blood tests. if anyone is more interested, i can tell more. of course, the proof is 'in the pudding' so we will see where this leads us but i thought some might be interested in what is seemingly affecting my son. as he was first testing my son's energy field (i know - sounds whacked!) - he said "his brain is showing a lot of stress, a lot of stress, so you can't blame him for whatever he does" reactive to lyme, non-reactive to any lyme co-infection (lyme mom - i know, i know - you're the town crier falling on deaf ears, i really did not believe him to have lyme b/c he had clear strep, no 'other' lyme symptoms than those consistent with pandas and a completely negative western blot.) reactive to cytomegalovirus ( in the herpes family) slight reactivity to lead reactivity to fungus "a lot, a lot" reactive to toxiplasmosis gondii low serotonin level some trouble gastrointestinal tract some trouble liver mild, very, very mild reactive to autoimmune slight reactive to strep slight reactive to radon no reaction of EBV no reaction to mycoplasma we live in maryland where lyme is epidemic - this dr believes "half of the people before you have lyme whether they know it or not"

fyi - my son did have a t4 and tsh check with his initial bloodwork. they were within normal ranges although his aso was very high. it would be curious to see if high titers correspond with normal thyroid and if those that don't have raised titers have inappropriate thyroid.

is it determined that inflammation is the problem, or is it interference of brain signals? or are you talking about inflammation in general and i'm thinking basal ganglia inflammation?

i saw the second half due to the post. did they mention if any of them had a neurological work up or if they diagnosed as psychiatric and treated in that manner? i posted a few weeks ago, that it seemed the two fields should be interrelated and they don't seem to be in reality. dr T. stated that they are, which i certainly appreciate his expertise. was there any mention of neurology or only psychiatry?

so - i've been saying for some time that my son is doing quite well -- averaging a 2-3/week on Buster's chart meaning slight notice of a few pandas symptoms or one medium issue that may be troublesome not debilitating. this is down from numbers in the teens in early January. he is in a private school but we've been going throught an IEP eval with the public b/c the psych suggested having him evaluated for an expressive language problem. i haven't had the final meeting yet, but he seems to have done very well in the eval - indicating there is no need for any services b/c he's well above grade level in learning. we were there on monday and as i was waiting, i picked up a copy of the out of sync child and was skimming it. his only sensory issue seems to have been extreme sound sensitivity, which he is not currently experiencing - so i've never really investigated sensory problems. while skimming it, saw something about thought processing being a sense that can be troubled, and thought it might be good for me to read. yesterday, we had a terrible conference at school. we've been working on slowly adding time to the day to make full day. i knew things were not perfect but thought things were going fairly well. he says his days are "great" and tells stories with enthusiasm as to what's happening in the class. the teacher is frustrated - he's troublesome with the other kids - kind of a picking at them bothering, he is constantly getting up and off task of what he's supposed to be doing. basically - out of sync. out of sync with the kids, the teacher, the work - seemingly everything! she doesn't believe it to be recent but his general pattern, not sure why she hadn't brought it up before b/c we're in good contact and they've been understanding, helpful, etc - but that's a different issue for another time. i just began the book but recall seeing discussions of it here. does anyone have thoughts on out of sync and pandas? what are thoughts on out of sync vs/compared with just right ocd? i've stated many times that he doesn't seem to have complicated thougths with things - maybe that why - could it be a sensory issue vs. ocd thoughts? i am reading the book but just wanted to ask for input. thanks.

not sure so relevant to your situation but thought you might find it interesting. . . we have a friend that i believe has undiagnosed pandas. i've suggested it, they suggested to psych, tests run, "ruled it out". mom has taken that to be true. anyway, he has had many ear issues his entire life, age 6 now. a few years ago, he was having persistent ear infection and was on a couple different abx, a couple different times. they then cultured his ears and found that it was a yeast infection that was causing the trouble. i had never heard of a yeast infection in the ears. he is someone who had trouble with yeast before, which i don't believe yeast is in your history? so, i don't really think is your same situation but just something to know.

there has been so much good info given here. i am one who is a huge advocate of that book. my son is one to have inappropriate flight or fight reactions, not seemingly tied to a web of thoughts (although i am willing to see that could be under the surface). he can let go of the issue according to something that makes sense to him, but is not something other's can figure out to help 'fix'. i'm not sure how much it makes sense to him either - it's more of just if it feels right or wrong. we have had some success with getting him to state if there's 'a reason or no reason'. - he's fairly good with "there's no reason or there's a reason but i don't want to tell you." i think the value of that book for me is in my actions and reactions when he is "exploding", not really that it is changing anything of how he is acting/perceiving/behaving. that it's not changing him or his thoughts - as in what meg's mom said about it not being for ocd. i don't think i actually use the 'basket concepts' from that book. i do bring it up at a calm moment and ask for his solutions and what he thinks we should do, then try to remind him that he said he wanted me to X - he's usually not so receptive to that in the heat of the moment. but he does come up with solutions in the calm time and i think appreciates the concept of partnering to find solutions. i can't fully remember but i guess that would be that i'm using the 'emergency techniques' which according to the book, are good but not the full picture. for me, that what i find the most helpful b/c i need the emergency techniques b/c i don't think he's behaving like this due to psychological reasons that can be fixed with behavior mod but rather due to medical reasons that need healing. for my son, the best thing is to not engage with him. previously, i knew this but didn't know how to do it. now, i repeat back to him what he is saying. "it's all your fault" - "it's all my fault"; "i need to get dressed with brother" - "you need to get dressed with brother". depending, i can say it like a fact or a question or a joke or whatever. this would be instead of what you're doing when you say I spent my time trying to stay calm, which makes her think I'm mad because I'm not talking and breathing slow when inside I'm about to blow. it sounds like you're trying to not engage with her but you're focusing on keeping yourself calm and that's upsetting to her and you're still perpetuating some negative cycle. simply repeating back what she's saying keeps you involved with her, but not engaged. for him, sometimes it can be simple "i'm not going to california tortilla" - "you're not going?" - "NO!" - "no?" -- this makes him reevaluate the ridiculousness of that b/c he loves going out to eat and loves that place. a few minutes of silence, then "okay, i am going". repeating is very helpful for his knee-jerk reflexive negativity. it is helpful in more complicated too - a big freak-out b/c he wants to get dressed at the exact same time as his brother (which i actually believe to be an element of separation anxiety). "i need to get dressed with him" - "you need to get dressed with him" -- this is a more complicated issue and we still haven't uncovered what's driving it. however, repeating helps to keep the level down and we can move toward some sort of solution rather than having things spin out of control. today he wanted his brother to come back up and take his clothes off to get dressed together. we were able to relatively calmly get to asking his brother to come upstairs and be in the room while he got dressed. we had tried a desensitization with this but got off track with it - he has done well with steps before and we need to begin that again - however, the repeating and talking about reaching a solution that works for everyone is helpful in the heat of the moment. so it sounds to me that you're a bit in the same boat as us to look at this book as a 'heat of the moment' help and suggestions for having her involved in solutions and use the other workbook to get to the root of the issues. good luck!

no kidding - i wrote what i thought was a funny little note but i guess you've missed out!