smartyjones

I think what is being mistaken for ASD behaviors are part of his OCD behaviors and regardless of which the interventions being used are exaserbating his problems in class. Hi amy. did you see the post from arial in the past week or so? if she doesn't answer, she may be a good person to PM for suggestions for a younger child. you didn't so much specify behaviors, so i'll just give you some of my thoughts. first, i am a huge fan of the book The Explosvie Child by ross Greene. I read it a couple of years ago when it practically jumped off the shelf at me after a terrible day with ds. we have used the techniques in more of a crisis mgmt style for unreasonable outbursts and overreactions with ds. that one is written with the parent as the audience. he also has one written for school as the audience that uses the same theories. i don't know that that will help so much in the short term for the meeting, but maybe for long term. i'm rereading it now looking for more suggestions on problem solving. Also, what to do when your brain gets stuck is a really good workbook. not just for your son, but for the staff to read to understand OCD with a child's perspective. it's a workbook and a quick read for an adult who's not working it. i'm quite sure that if we hadn't discovered a pandas link with ds 3yrs ago, not only would we have tried to treat him behaviorally, but he'd likely have an asperger or 'asperger-like' diagnosis. even in extreme exacerbation, he misses one major criteria but that's where most of his behaviors line up, so the likely label. i think there's much overlap in behaviors. ds is now 7 and we're just at a point where he's healthy enough and mature enough to work through problems. previously, it was more crisis mgmt when things came up. so, my suggestions may not be too helpful for you with a younger child, but maybe you could adapt it to something that could help. my ds usually just goes from 'yikes, somethings wrong' to intense avoidance, which can result in complete shutdown or troublesome fighting or from ';something's wrong' to intense need for the one solution he's come up with to solve the problem. throw in a physiological anxiety override and he's a disaster. Explosive child discusses that kids can go from 'realizing a problem' to 'their solution' without ever being able to correctly state their concern and state a goal. What they do as a tantrum or refusal, such as not going to school, is a solution, not a concern. Backing up and understanding their concern is key to arriving at a solution. we have finallly found a good psych to work with who suggested having in ds's 504 a provision for a problem-solving model to be used with him. we've worked out a beautiful graphic with baseball as the analogy for the 6 steps of basic problem solving. we're still working with it at home but will soon implement it in school also. right now, his responsiblity is to simply 'step up to the plate' and say he needs help with a problem. the adults help work through the 6 steps. it's good for helping him realize the weight of the world is not on his shoulders alone to fix whatever is wrong. as an example, the other day he was unable to go into class after many days of great progress. i knew he was anxious about the upcoming spelling test. through this, we discovered he was concerned he'd get a yellow card b/c he was worried he'd overreact and yell and scream if he missed the bonus words he missed on the pretest. i stayed in the hallway and he took the test as a 'pretest' from the hall, his teacher loudly saying the words near the door. after, she looked it over with him. due to working this type of problem-solving model, we could clearly see a child in angst over getting a perfect grade that he so much wanted, also so very concerned about his reaction if he was upset and the consequences imposed on him. so clear to see and feel his pain. this gave us many clues about his reactions in school. after, he went into class and on with the day with no trouble. he knew there was a problem, his solution = avoid the classroom, at all costs. without a step by step model, he would likely have refused going into the classroom, repeatedly slammed his locker, run away, fought anyone who tried to help -- on and on in a downward spiral. difficult to empathize with and easy to hit the problem head on with more troublesome consequences, into a terrible spiral. so, i'd suggest if they could try working with those behaviors you see as ocd in a problem solving model. they may have something they use or you could develop something -- you can google 'problem solving model' to get ideas. it may at least provide opportunities to see it's something other than 'just' behaviors that their interventions aren't helping. good luck!

as recently pointed out to me. . . perhaps the PM feature of this forum is underutilized. on a recent heated post, i took offense to something a poster wrote . i took it as negating my statement and pointing out my comment as belittling to another poster. i fired something back. i do now see the poster's intent was to lighten things up but i also see how i took offense. we just have our words here without tone and facial expressions. it was then suggested to me, that perhaps a PM would have been a better way to express my feeling of offense. i thought, 'point taken.' dh thinks we should all get together and sing kumbaya.

a relatively 'new' person with 98 posts that's not actually what 'someone' said -- why don't we stick to what we have to say for ourselves rather than tearing down or sarcastically commenting on what others have said! Peace OUT!

hailey -- first, i am so happy to hear of your daughter's health and wish continued NO symptoms for her! i must also say, that i agree with LLM. what you describe seems quite classic infection-based to me. it may be that she and you are simply 'lucky' that you caught it early and haven't had continued troubles. as for your question of autoimmune vs infection, i think it simply lies in that there is not enough research on the chronic state itself so there is also not enough research of an acute variant. my advice to you would be to remain aware of current thinking and practices concerning pandas. certainly not to the point of being paranoid and worried or even researching and thinking like those of us dealing daily with things; but to the point that you are confident you have a good plan or two in place for 'what if. . . ". hopefully, for her, it may have been a one-time pandas episode without reccurence, but if not, you'll be on your toes for what to do. interesting that you post this now. . . i just saw an old friend of mine that was aware ds has had some troubles and related to strep infection but not so much many details. as i was going into more details, she recalls her daughter had an odd experience with strep many years ago. she didn't think she was sick but she had mild to moderate emotional troubles. a week or so later, there was something about her throat -- still mild. 2-3 weeks later, my friend took her to the doctor b/c she was driving her crazy with upsets. i believe positive culture, am sure they put her abx. a few days later, child totally back to normal. my friend says she remembers the day behaviors started. sounds to me like classic pandas. girl has never had trouble again. when i asked about strep infections, my friend couldn't remember if she'd had one or not but definitely didn't have the issues. for my friend, it's one of those catalogued wierd things -- the entire reason she took her to dr, was emotional trouble; it was not that she was sick and just feeling off b/c of being sick. i don't think there was any discussion of pandas or infection-based behaviors -- the girl was 'off' so in a routine check of general health, they thought her throat could be strep. i wonder how many of similar cases there are, that get resolved and are never diagnosed. dr b was recently quoted as saying, 'it's not a rare disorder, just rarely diagnosed.' perhaps there is an acute form and a chronic form. we have seemed to have lost teeth without big issues. but, there are many here that believe there is a definite correlation between teeth issues and exacerbation. i wish you continued health!!!

iowadawn -- hilarious word choice!!! thanks for the laugh. too bad it's all too true.

wow -- tpotter -- that's not just a crumb -- that's the whole piece of cake! thanks. i'm glad to see there seems to have been discussion on viruses and BBB!

hilarious!! our new psych -- that i really think is a needle in a haystack -- suggested including a problem solving model for the school to follow with ds in his 504. our appt with her was the day before the meeting, so it's not really in the 'official' plan and i hadn't fully developed it -- but it's where we'll be heading to having a model for the school personnel work that with him in this manner. for ds, who is into baseball, we have a graphic of a field with the 6 steps of problem solving as an analogy to 6 steps is baseball. it's genius!! so far, it's worked very well at home. we're still in the stage of 'training' him with it and then will transfer it to school also. i am again reading Explosive Child where it discusses for some, they skip the step of 'defining the problem' and move into one solution, so right off the bat, they need that solution instead of stating their concern. the past few weeks, the image of that 70s space show robot just running around 'danger, danger' has been popping into my head as how ds copes. for ds, his responsibility right now is to 'step up to the plate' and 'stay at the plate' which is just saying 'i need help with a problem' and staying calm while someone works with him. he's not even into the real first step of problem solving. i think it's one of those things that is so simple, but is genius!! if you take something that your son is really into, break it into 6 steps and then relate those steps to problem solving steps -- then develop it as a plan of instruction for people to work with him. it's basic problem solving -- so they'd be ridiculous to not take the suggestion.

i know, i know, you're busy, you just traveled to a conference . . . can you throw me a crumb? how was it? any new info or revelations?

anyone notice that the original poster of this question, a relatively 'new' person with 98 posts -- that everyone claims to be concerned about the 'new' people getting misinformation or correct information - has LONG since left the conversation admist all the bickering???? dandd -- i hope you got some support and answers you were seeking!

4 years ago, Easter monday, ds9 woke up with white bumps on his face that looked like teenage, whitehead acne. they dissipated during the day but never completely went away. the next morning, same when he woke up. by the time we got to drs, around noon, they had again dissipated. she said, 'i don't think it's strep'. he was positive on the rapid. they didn't test ds7 b/c at the time he was 22 mths and 'babies that young don't get strep." the next morning, he threw up = positive on a rapid. treated both with abx. of course, didn't test again after off abx. i strongly think this infection is what got the ball rolling for ds7's 'sudden onset' 2.5 years later. no other signs of strep but for face rash for ds9 and vomiting for ds7. it could have turned into stronger symptoms or could have not -- ?

oh -- sorry, sorry, there is something you're missing. he's being disruptive in class. but. . . i asked for the meeting b/c he's telling me it's too hard, he's frustrated and she's 'quietly yelling at him." i'm stunned she's at this level of frustration without even a phone call to me. she's totally taken his inabilities personally and rather than seeing it that he really can't do these simple drawing tasks, she sees it as 'he's not trying'. she's taking what i think is social anxiety reactions as personal affronts. what does your non-artistic son do in art class? and yes, this is 4th grade ART !!??

sorry -- i guess quite rude of me to resort to name-calling. but it did make me feel better. yes, kimballot, thank you. the laugh is was looking for. nancy -- no, ds7 is who we just had the 504 meeting for. perhaps this is the beginning of the process for ds9. always so nice to know there are people here who get it!

ds9 -- not 'diagnosed pandas' nor 'diagnosed anxiety'. . . but b/c of ds7, recognized many signs last fall -- anxiety, low OCD, breathing issues. our integrative MD believed him to have issues with strep and TBI. treated, and still do, but ds is seeming great and very healthy. we are in a similar positiion as with ds7 -- not so much intense symptoms but muddled realm of possibly still due to symptoms + issues due to learning poor coping skills during time of symptoms + issues due to general personality issues -- i think it's a combo. ds is struggling in art -- likely also fine motor control issues, and ds is very literal, linear person, likley social anxiety issues in this class. had horrible meeting with art teacher last week. admittedly, i went in thinking i'd have to defend and explain him ( wish i'd been more objective) and that's what happened. although, i was surprised at her level of frustration, close to anger. i did say to her, 'i'm feeling your frustration and i wouldn't want to come to your class!" end result was that we should get the guidance counselor involved, who was out of the week. ds has art first thing monday morning. even with all i know about anxiety and school phobia, dh and i decided to have ds go to school late to miss art b/c there is not a good plan and i don't feel it's fair to have him be with this teacher that i agree has anger toward him that i wouldn't want to be around. plus our meeting made things worse without any resolution. i e-mailed his main teacher to state this and said i was open to her suggestions but didn't think i could have him in art on monday. vice-principal called me to discuss and suggested he would go to art class to observe and help where he could for this monday as we try to resolve. this will work for me, so that is the plan. i told dh i want him to go to future meetings to be the 'voice of calm and reason' from our side b/c i don't think i'll be successful at it. but, the reality is that he works and i am at the school every day -- walking ds7 in and returning for lunch. so -- i've got to figure out a way to not be so emotionally tied to ds9 feeling persecuted and unhappy. this is a new school AND new system for him (public after montessori -- very different) and i am so sad he is unhappy and struggling. i am happy with his main teacher and feel she has an appropriate level of compassion for him. the administration has been fabulous for ds7 issues. any help?

brown eyes -- i tried to send you a PM but your box is full!

ds7 is having a fabulous week -- teacher helped with some writing graphic organizers; Brain gets stuck exercises; good hints from new 'needle in a haystack' psych. ds9 is falling apart. writing very difficult. frustrated in art and acting up. i met today with art teacher, old battleax who kept repeating 'just not trying'. shows me poor cutting and agrees when i say looks like fine motor issues -- horrible attitude that what's she's asking for is not too hard -- right! for you!!! that's the point -- ds stated that for him it's like 'she's talking spanish'. ends meeting with, 'so, what should i do, have nothing required of him?' sarcastically. i say, 'NO. i think we need to investigate treating it as a learning disability'. does anyone have that clip of ridiculous cartoon IEP, 'if he only tried. . . ' thanks.

WOW -- congratulations -- please keep us informed about the details of this!!! sorry to hear about the reappearance of tics. waiting with baited breath to hear any and all about this symposium!! thanks.

oh nancy -- on my to do list is to try to get a handle on the glutamate issue -- i've kind of zoned out of it b/c it seems so overwhelming but i think is something i need to explore. i was at a talk last night with a DAN dr. i know you've posted a lot -- can you just give me a quick lesson -- i think glutamate is the excitory neurotransmitter that may be in excess in the brain and GABA is the supplement that works to balance that -- ? are there many options for GABA? is there any downside or side effects? also -- i asked my siste if she knew anything about glutamate and she questioned if there is some relation to MSG,the g is glutamate, right ? obviously very different, but she has extreme reaction to msg, as does her son, so wondering if that could indicate any connection. thanks!

i will disclaim that my thoughts about infections causing issues are ever-growing and i tend to see it as the cause for much. even more so if you have one child with issues. so -- this sounds very much like a form of anxiety to me. there could also be some underlying neurological induced learning disabilty that may be slight so no one realizes but could be causing him trouble. my ds7, 2nd grade, has big school phobia issues. partly is just right OCD that he just has to get used to it to get over it. i'm realizing some is due to reasonable anxieties about the classroom. as an example: he's been totally unproductive during journal time --either just sitting there or doodling or making strong pencil marks all over the page. he says he 'hates' journal writing. not sure if he has technical dsypraxia or not but there is something there. last week, his teacher started him on a graphic organizer to get words out and then works with him to make sentences. so -- a two step guided process instead of independent one step. he's totally into it and writing good jounal entries. i think it's so easy to think a bright kid who can do well in certain areas but isn't reaching the bar in others is just being lazy when really there is another reason such as anxiety or learning issue that if addressed, would help. i love the website anxietybc.com. i think there is a section on test taking anxiety. i have a 9 yo also and yes, it could just be 10 yo carelessness . . . but i'd advise to err on the side of checking out other causes.

if you have any interest in homeopathy -- you could research thuja -- there are external creams and pellets to take internally.

hmmm - very interesting. i just posted something about odd seafood-like breath smell i've noticed on my ds on pandas board. i noticed it on thurs and stronger on friday. i have in the past noticed it but as a passing thing. i think he's doing very well medically - and actually, quite well behaivorally but with intense school anxiety/phobia. we've had trouble keeping him him 'flowing' as far as bm because of recent busy schedule -- not so consistent with probiotic and CALM magnesium, that are usually helpful and busy schedule with activities. it had been a number of days w/o pooping for him and he did last night. today, i do not smell that smell on his breath. interesting connection that i'll have to watch. thanks for the info!

i know there have been discussions about smelling strep and bad breath. anyone know about odd smelling breath like a slight seafood smell?

hi powpow -- i don't want to be harsh, but i must ask -- do you have plans A, B, and C set as you 'watch and wait'? as i read your initial post, i thought, yes, this without a doubt in my mind sounds like pandas in a preschooler. my ds was 4.5 at onset. his behaviors included: impulsive, obsessed with symmetry, hyperactive, baby talk, inapporpriate potty talk, tantrums, aggression, silly rhyming, repeating words and phrases, decisions were monumental, intense fear causing avoidance, need for certainly. since he was only 4.5, everyone we sought help from said it was a phase, testing, yada, yada, yada. except for ONE behavioral therapist who diagnosed him. if not for her, we would likely still be trying to treat him behaviorally and probably not too successfully. she said 'what you're describing sounds like OCD". even now, with all i've learned and experienced about OCD -- i find it shocking she saw it. he had a known strep infection 2.5 years prior. with onset, no real signs of sickness. i had taken to the doctor around this time b/c one night he woke up with intense ear pain and was fine the next day. the dr found nothing. when tested his titers were high -- 898 -- and a positivie culture. a few months later, a new ped did a sinus CT b/c he suspected infection --but no real signs except for behaviors = all 6 cavities infected. i think your key is no KNOWN strep history -- or other infection -- for her. once on the right abx for him, ds had 100% remission in about 3 days. so long ago and i didn't have this forum -- i thought he was cured and it was an odd, wierd few months for us. after about a month off abx, he relapsed. i was completely caught off guard and devastated as i tried to piece together a plan. i think it's way too much of a coincidence that your dd had intense abx and steroids and you've seen an improvement in her behaviors. i would advise you set up plans for what you would do if the behaviors return. perhaps make appt b/c most have waiting times anyway that you can cancel if you think so in the future. i also know what it's like to watch a 2nd child and wonder what is 'normal' and what is troublesome. he's older, 9. last year, he was showing symptoms but not too bad -- worries about someone breaking in and taking his baseball cards, needing to be inthe same room with me. he had high titers. dh and i went back and forth about taking him to our dr we see for ds7. i remember saying, "are we just waiting for him to fall apart before we take him in?' i guess we were b/c a few weeks later, he was having terrible 'bad thoughts' at bedtime (also tv induced -- mostly about trains crashing and it was around the time of that train movie last year -- but much more extreme than should have been for a kid seeing something upsetting). dr believes him to have had strep, TBI and HHV. he's done extremely well with treatment. good luck.

quote name='mamapanda' timestamp='1317842259' post='122624'] I *thought* he had been doing fairly well, but his teacher says he's misbehaving in class. His principal observed him today just jerking around, making noises, and looking like a mess. They all remember my sweet and happy kid and know this is not him and are concerned. At home, he's great - no night terrors, OCD thoughts, anxiety, tics, anything like that. But at school he's having issues. mamapanda --- i'm sorry -- i'm not familiar with your story but just wanted to quickly jot some thoughts-- my ds is 7 also, had 'sudden onset' 3 years ago. that school year was up and down as we figured much out -- 100% remission with abx that didn't last once off the abx. he returned to school the next year and did quite well until the second semester. he seemed quite healthy at home and i was very surprised at spring conference to hear all the terrors of the classroom. my theory now is that the teacher was raising the bar b/c he'd been doing so well and he was having much trouble reaching it. unfortunately, she just became frustrated and everything spiraled down from there. at the time, i was baffled as to how he could seem so well at home but be having so much difficulty at school. we homeschooled last year -- not totally due to pandas, also selling house, yada, yada, yada. this year, with new school --he's had extreme separation anxiety issues with getting into the classroom. i've had many new insights and opinions about this just in the past few weeks -- largely due to help from this forum -- dcmom, momwith ocd son, and LLM -- my OCD heroes! here's my current thinking about my ds -- he does have 'just right' OCD that crops up for him and is really all about the feeling that something is not right. he does have that about entering the school. IN ADDITION, he has some very reasonable anxieties and fears about his ability to navigate the classroom -- troubles with handwriting, troubles generating ideas, ability to express problems and problem solve. i think these anxieties help feed the 'just right' feeling. if you're interested, search resent posts under my name -- specifically one about 'unfounded' vs. 'unknown' fears. so i wonder, as we do an ERP like schedule to entering school, if we are exposing him to school (which was necessary for the first few weeks) but if now, we need to expose him to encountering problems in the classroom without me there to help solve. it may not be for your ds, but it could be that there are issues in the classroom that are troublesome for him. it may have previously been there at a low level that he could deal with, but now due to pandas they are becoming a hurdle he can't jump and/or there is increased anxiety concerning them and it's anxiety that is presenting as behavioral challenges. the other thought -- what you describe sounds like tics. for the first year after ds was diagnosed, i said he had no tics or movement issues. i saw eye bliking once for about 3 seconds. as i've understood tics more, he does have some things (mouth wiping, slight spitting) that i do think would be classified neurologically as tics -- but to an average person and even someone in the know but not very skilled with tics, would just seem to be behavioral. these are brought on in extreme by stress. the day of meet your teacher, he was extremely mouth wiping during the whole presentation but hadn't been doing it before and only slightly after. keep me posted!

just wanted to mention, in phrasing things. . . the initial behavioral therapist that diagnosed ds, when we first saw her and she was trying to understand. . . we were discussing potty avoidance and intense school avoidance. she asked if it was as if he 'just couldn't bring himself to do it'. that was exactly the right phrasing. i have remembered this and tried to use it when discussing with other therapists and school personnel, it does seem to be helpful to try to emphasize that it is not as simple as a choice for him.

norcalmom -- such astute comment on the stages! love it. i seem to find myself stuck in more or lesser terms of 'addict'. maybe i need to go through 4 to get to 5 -- ? i am very interested in the role of viruses in the initial cause and/or exacerbation of symptoms. most of the 'infections' we discuss are bacterial and the focus is on eradicating them or at least bringing them in line to a symbiotic relationship within the body. i'd love to know the info discussed on viruses alone or in addition to the bacteria.