smartyjones

what dose of zinc did you use? it could be that zinc is not good . . . or it could be that you used too a large dose and that was what wasn't good. zinc can chelate copper and what you saw could have been the release of copper into the bloodstream -- you would want to get rid of the copper - but a large dose into the blood could cause symptoms. the zinc could be working to balance the copper - but if too much at one time, could show copper overload symptoms. i don't know that i've really heard of zinc having negative side effects other than that. but of course, there is always the exception. and i think pandas kids are good exceptions. my ds has a paradoxical reaction to GABA and he did show very negative effects to azith when he was very first treated for pandas. when we started ds on zinc, i think we did something like 7 mg at a time or something. we worked up to his current dose of 50.

i use homeopathy -- for long term for ds pandas, we see an integrative MD, who i kind of think of as an infectious doc. last summer we added another integrative MD who is working with him in a biomedical sense - balancing mineral metabolic issues. in my long ago life - prepandas - i used homeopathy for myself and my kids. i was first introduced to it for a sinus infection that i could not kick, but it worked for it. we also use it for acute issues. after a weekend trip in which almost everyone i ran into was talking about the flu, i felt run down and aching -- psychosomatic ??? --- anyway, i took oscillo..... i was very tired for a few days, but then bounced back -- was i not really sick, or did i fend off the flu --- no way to know. ds8, this week has had a bout of post nasal drip. i first gave him one remedy, not much help. i gave him a different one yesterday and that has seemed to help. you can get blue tube bioron at whole foods or any health food store. i'd say you could try for yourself for colds, coughs, etc but for serious issues, i would definitely cosult a professional. the caveat being -- often if the remedy doesn't seem to work, may not have been the proper remedy in the first place. Feel better!!!

update on ds and vit D . . . during Christmas break, we started supplementing slowly, 200 iu. we stayed at each level for about 7 days. week of 200 iu, no apparent change. week of 400iu, no apparent change. a few days after going to 600iu, ds began some typically troublesome behaviors for him. . . big concern about fairness with brother -- it's an odd fairness in that he wants things to be exactly equal and the same for the two of them; more involvement in his own thoughts and himself -- read an entire book each day (not necessarily a bad thing, but in a closed off, introspective way); difficulty with homework, very hard to get started and avoidance of easy tasks. you'd think i'd be smarter on this by now - but it clicked on day 6 that it could be the D. brought him down to 400iu. those behaviors abated in a few days. yesterday, he ran in from school to get right to homework -- of course, b/c it was a video day - but even that didn't matter last week. i guess i'll leave him at 400 for a while and then try to go up again. he's up for blood tests again - i imagine D will still be low b/c i don't think we have been supp-ing long enough to make a difference. does anyone recall -- i thought i'd seen somewhere from a conference that 'pandas docs' - not sure who -- said they like to see pandas kids with Vit D levels close to 50 --- ???

momtojake -- what do you get on the report? more than the sample on the webpage that says "substantially higher risk" or "normal risk"? i think it sounds interesting but i am a little skeptical -- honestly, only b/c of the $. long ago, when ds first presented, one of the docs we saw was a naturopath. she told me when she was first practicing, she ran many tests and still finds the info very interesting. . .however, she now only runs tests that are going to influence the way that she treats. it's great to have the info, but it's costly. so, i'd love to see the info - but what would i do with it? LLM -- what are you hoping/thinking to find? thanks.

my ds showed no mutations on the MTHFR test. although, i show a A1298C mutation. he had pretty classic pandas presentation -- sudden onset, high titers, positive culture and initial 100% remission on abx. we further went on to find multiple other infections. he does show an inappopriate copper/zinc ration - although negative on KPU (we will again test in the future -- some thought that deficient zinc may show neg on that test even though you could really have it -- know anything about that LLM?). he seems to show normal histamine and methylation issues. idk -- could he simply have copper/zinc issues as genetic and that plays this big of a role? seems like not enough. could that be thrown b/c of infection and it really is infection at the root of all the trouble and no real genetic mishaps? are there other yet undiscovered genetic issues at play? seems like it's a black hole. i'd say i thnk along the lines of LLM with pans being the end result of something and i've never been able to understand the 're-setting' theory. LLM -- i'm going to check out that test -- please keep us posted with what you find. oh great -- dh will be pleased - another test and more $.

3boys -- my ds doesn't so much have tics, so i don't know how things are different --- but, he experienced a severe, contamination fear, food restriction in relation to a herx-like reaction to an anti-viral. i think for him, viruses were a big part of his issues -- he was first pretty classic pandas with sudden onset, high titers and a posiitve culture. it was not coxsackies we were treating and not using valtrex -- but it was severe and lasted about a week to 10 days. he then just shed it -- it was gradual on-coming, a few days and was gradual going away -- but nothing we did caused it to come on or caused it to go away. we were working very closely with our doc at this time b/c it involved food restriciton. -- what does your doc have to say?

i'd say check out migraine headaches -- they present in many various forms for different people. generally, people are treated by a neurologist for migraines. generally, they are treated with meds. the related neuropathy and strange feelings can be referred to as "aura". i personally have gotten a whole host of aura -- visual disturbances, shoulder pain, numbness, inability to speak correctly etc. you can google to see a newscaster in CA that experienced this on air after an award show in the past couple of years. some people experience great irritablity before migraine; intense hunger; intense diarrhea. my doc does believe they are related to lyme and TBI and/or other infections. they got significantly worse for me while treating bartonella. if it is migraines, a traditional neurologist likely will prescribe meds to take when you get it. you sound like you look for more natural means -- you may want to seek an integrative MD, perhpas one with experience in lyme.

cobbie -- how was the zinc/copper ratio?

my ds8 is a 'give an inch, take a foot' kind of kid anyway. i always say OCD and anxiety are 'give an inch, take 10 miles' type of disorders. so, yes, it's such a hard, fine line to determine when they are healthy enough to handle something that needs to be conquered and when it's medically too tough. in my opinion, for your dd, the fact that she has made great strides and that there was a similar thing about PE, tells me it's a kind of thing that is/will morph and might be best to work on conquering rather than waiting for it to resolve. but of course, i'd say follow your gut feeling on that. i usually post about ds8, diagnosed pandas and major school phobia issues. i also have ds10, not diagnosed pandas but has it - just not to severe level to be diagnosed. has had exacerbations but mostly has social anxiety issues. is quite linear and literal, so creative art is not his thing. last art project was to take 4 pieces of paper that had pre-drawn squiggles and create something with them. he did a fabulous drawing, putting them together and elaborating to create a stunning rollercoaster. next project, self portrait. ds's forte is not self expression - oral, written and certainly not artistic. so, he went into avoid mode, "i can't draw." the teacher, of course, did not accept that b/c he had just done a great project. he was spiralling with this and teacher not bending or really 'getting' where he was coming from. of course, art is on monday - so sunday night, upset and not wanting to go to school. we did a 6-step problem solving model. 1 - define problem; 2- define goal; 3- list all possible solutions; 4-pick one solution to try FIRST; 5 - do that solution; 6 - - evaluate solution. problem was 'i can't draw and hate art'. his goal was to make it through art w/o getting in trouble. solution he picked was to write teacher a note describing situation. he needed some help to make this a positive note but it came out beautifully. he expressed he doesn't like to draw and thinks he's not good at it but does like art history and mosaics and asked for her help in the things he finds difficult. she then discussed with him that her idea would be to take a picture of him and he could draw from that. he was happy about this. we're now in step 6 b/c this past monday when she was supposed to do that, she had forgotten and i think it was an unproductive art class for him. but in the morning that monday, he did not have school resistance. we often use this model to get through problems. for ds8 - he was 7 when we started. we drew it out like an 'at bat' at baseball.(i must say -- it's actually beautiful) at first, his only responsiblity was to 'stay at the plate' - pre step 1 and we would work through it with/for him. he now is pretty good at the whole process. it's very interesting that he OFTEN has a different goal then eveyone else -- which is very valuable information -- how could we agree on a solution if we have different goals?! for both my kids, they really don't want their irrational way when they are being unreasonable or avoiding -- they want their problem solved. but, they don't have the quick problem solving skills to get to a solution and their 'go-to' is avoidance. then it becomes the seed that dcmom talked about. ds8 tends to think he is the only one who experiences problems and his first solution is the one that needs to happen. this has helped him see there is actually a wide range of solutions to a problem and sometimes you have to try a few to find the right one. when we first started this, i used to point out to him times that he, we or someone solved a problem in a quick manner to make the point that people solve problems all the time, all day long. the room was dark - we turned on the light. i needed a chair - i got it from over in the corner. he'd laugh and think it was silly, but he really needed to get that. OMG - i have now got to solve the problem of all the things i am avoiding doing by being here on this forum!!!

oh c'mon dut -- nothing is a smooth curve!! my thoughts from our experience and what others here say. . . the no specific fear and all encompassing fear is that something is going to happen that she will not be able to handle. she may know that something, such as dcomom's dd with vomiting; she may know it and not want to say or she may just feel a general sense of doom that's it's all frightening, but i'd bet the end aspect is that she fears she is not going to be able to handle it. so the end goal is that she can handle what she fears. the best way for that is for it to actually happen and her to handle it -- first with support and then with gradual independence. therein lies the whole issue -- how to do that lies the challenge. long ago, we used to ask ds, 'do you know what the problem is, do you not know or do you know and don't want to say?' -- he was pretty good at stating one. often it was ' it just is.' his OCD presents as 'just right' OCD and there's often not a specific reason, it just needs to be right. once during severe exacerbation, it was 'i know and no one else can ever, ever know.' that was more than just right with contamination and death fears. for ds, he rides all along the anxiety/OCD spectrum according to his level of health. in addition to pandas diagnosis, he has anxiety diagnosis, not OCD. today, he's quite healthy and quite articulate with stating problems and finding solutions. if she can break things down on a 1-5 scale, can you rate the activities of her day? when we did this with ds, it was generallly entering the building and class and writing activities. when these were not dealt with, the fear and anxiety spread to everything regarding school and he felt he couldn't articulate; it was everything-- but really there were specific fears. his writing fears are well founded and he is twice-exceptional, so school would be a challenge on his cognitive issues alone -- being misunderstood in that sense was very real. we have a 'challenge chart' -- dragged out the old railroad potty chart and blacked out 'potty' and wrote 'challenge'. he gets a sticker when he does something that is challenging. first month of school, it was going. then changed to going on mondays. it's not something that will get him to do something that he is really resisting, just is an added bonus to support that it is difficult. it's about 25 spots and then he gets a reward of about $10. it has turned challenges into something more fun and exciting to conquer and he can be in control of how quickly he gets to the reward. we've had times (sept) when we are working on challenges each day or time like now where there may only be one challenge a week. we have also used steps in the morning. step 1- going to bathroom, step 2 - getting dressed, step 3 going downstairs, step 4 eating breakfast. when he resists, i've stressed we are only working on step 2 right now, after we do that, we'll talk about the next step. it's been effective for him. his current trouble with going to school is that he gets out of the car and runs into school -- imagine THAT! -- and often slips. last month, when dh took him, dh got out and went to help as ds sat there screaming, then clutching dh and saying he had to go home b/c he fell. wonderful principal took over, sent dh off to work and helped ds -- calming laying out, they could go to nurses office, look at his knee, etc. he went in with her, asked if he had to go to nurses office b/c said he was ready to go to class. yesterday, he slipped again, yelled for me as i hadn't driven off yet -- a teacher walked over, said a few words to him and he got up and went off. i think the hard-line rock of the adults stating and showing that the child CAN handle it is helpful -- and providing strategies for how the child can actually do it. compassionate and understanding that this is difficult but not wavering in that they can handle it - and school is where he belongs today and where he will be. i'm stating all of this in that my ds is in a good state of medical health and i believe is working on the psychological side of things that have developed. i do believe for him and for others with pans there are certainly times they are not 'available' to work this. the trick comes in knowing when and how to work that. b/c even though ds is doing great medically, if we hadn't had the good supportive start with this school to conquer these fears, he'd be home this year. good luck.

cobbie -- do you have on your list to discuss copper/zinc issues with dr T? how about toxoplasma gondii? good luck at the appt -- keep us posted.

pandaskid -- i agree this is certainly a baffling illness and it can present in many various ways-- however, one odd thing is that there does seem to be "types" -- MomwithOCDson's son has had many similarities with my son. fortunately for us, he is older and they have been a HUGE source of information and support for us -- for which i am eternally grateful!!!! with school phobia, my ds was terrified of it all -- that's pretty much what he would say when we would try to pin it down -- 'it's all bad', 'i hate it all', 'i'm concerned about everything'. and i think he truly was -- it was everything and nothing that was driving the anxiety. that said, he did have specific worries relating to school work (valid writing issues) and to how adults related to him concerning these issues and his handling (or lack thereof) of them. i would say from where i sit now -- comfortably over the hump (KNOCK ON WOOD), i would think USF would be a really good bet. i don't have any personal experience with it - but dcmom is such a knowledgable warrier in the pandas fight, i'd follow her anywhere and many others have great things to say. it seems to be the quickest, most intense, bang for your buck way to go. we did not do such -- we were more of the slow painful approach, with many wrong turns to get us on track. so -- are you looking at this as a phobia? MOM has some great thoughts. what exactly are you doing when you go to school on Friday? are you going to the school with the idea that he will be in one class for the entire class? obviously, that is too much so it sounds as if you are stuck between the grand impossible feat of attending one class (which everyone else seems to think is not too big of a hurdle) and falling apart in the parking lot and going home deflated. have you talked with him about what he would actually be able to handle? what if you tried coming up with some suggestions that would work for everyone -- going into the school building and spending the class time in the library working on the subject independently? idk -- perhaps just walking into the school building and walking the halls is all he can handle. then you develop a plan for one step ahead each time. maybe if you are doing something like this, you would move to 2 or 3 days a week of these baby steps instead of just once a week. of course, a skilled therapsit is most helpful -- it's important to allow him to feel confident and comfortable - but also to be tough to push it so there is progress -- unfortunately, a very fine line that is tough to gauge and i'm disheartened at how many therapists can't pull it off. have you checked out anxietybc.com? how about Ross Greene's Explosive Child collaborative problem solving model? it is slow and can be frustrating -- however, if there is progress, you are on the right track. a number of years ago, my ds was peeing on a towel b/c of some fear of the potty that we could never overcome or define. it took something like 72 days to s-l-o-w-l-y, move to the potty. but, it had been a year or so before with many useless, wasted suggestions and after that 72 days, he's been on the potty ever since. the savvy behaviorist who diagnosed ds with pandas asked me, 'is it like he just can't bring himself to do it?'. that hit it so well -- it wasn't that he was a brat, was manipulative, needed rewards etc -- he wanted to to what everyone else wanted - he just couldn't bring himself to do it. last year, i would walk with him into the class (which turned troublesome and i wouldn't recommend -- i prefer help from the school personnel). i felt like i got a contact adrenaline rush 5 feet before and 5 feet after the entrance that felt like a heart attack just from holding his hand. have you done a scale of 1-5 or 1-10 with him and broken down the aspects of the task -- first determine his ratings what each rating thinks, feels like and does. this is ds's words last year -- 1 -- thinks he's gong to do it; excited, happy; says 'i really want to do whaterver', cooperative, helpful 2 -- knows he can do it; getting pretty uncomfortable, can problem solve about it 3 -- uncomfotable but knows he can do it; nervous; just does it; problem solves then does the solution 4 -- not sure he can do it, but can try; nervous; maybe completes it 5 -- thinks he can't do it; scared and nervous; yell and scream, slams lockers, rip things, hits people, throws things last year, most of his day was a 3 or 4; writing activities were usually 10. one day, art was a 62. that was the day all fell apart. we didn't use this this year b/c we had better support from the staff -- but it may be a way to help you determine what specifically he needs support in.

YIKES!!!!!!!!!!!!!!!!!

mama -- have you checked out anxietybc.com? i've found their info and worksheets helpful -- but my ds is a bit younger than yours. who is deciding the plan of how/when etc he will go to school? hang in there!

my ds also had a serious problem with d-lactate -- not aggressive but very spacey and unfocused. we had previously used HCL by pharmax and went back to that with better results.

[quote name='tpotter' timestamp='1357612976' post='151982' But....they had no clue which flu would be around this year, so how do you know the flu vaccine will even work on this kind of flu? Flu vaccine started my older son's massive flare that ended him in a psych hospital suicidal (I now know he had PANS for many, many years previously, but the biggest was when he was 15 after the flu vaccine.) The only vaccine I would now consider might be TB if my children got cut by a rusty nail. Dr. B and LLMD and DAN docs have all told us "no more vaccines." curious tpotter -- have you just denied vaccines or have you had titers pulled to prove it -- were there any you needed to prove with college entrance?

LLM - i'll try to go through my notes -- there was a seminar at the DC OCD conference -- i think about anxiety -- something like what if you discovered your child was missing, but you were not able to contact anyone or do anything about it and you had to go through your normal day with everyone expecting you to act normally -- yet you were horribly worried and feeling as if you need to act. anyone else have that scenario posed more eloquently than i just did -- if not, i can go through and find it after the weekend. KaraM - i think i remember you were there for that - ?? i think she also had some stats about anxiety being more commonplace than ADHD.

still -- i tried to send you a PM but was't able. . . i don't want to scare you, but if you are not trusting this pscyh, i think you should pay attention to that feeling. we had a horrible situation last year -- a school psych who was so inept, it was harmful. if you want, i can share details. i believe they screwed up with ds and then went into serious CYA mode. in the end, we got private testing. ds was on home teaching for the rest of the year -- not ideal but was basically the least worst choice. this year, luckily, he got a spot in a charter school that did appropriate testing right from the start. i can imagine our school this year using some of the same terms -- "eligible for spec ed services" -- but with totally different meaning than what last years would have meant. does your school district offer mediated IEPs? that would not be anyone 'on your side' but would be an impartial person to attend the meeting. i don't think you should worry about appearing to be armed with the doc. it should be seen as someone to help you wade through issues, jargon etc that you are not an expert in. it's TOTALLY commonplace to have an advocate or doc with you at a meeting and if it's not seen as such, that would raise some red flags for me. good luck.

broo -- how did you hear of the antabloc? you see an immediate effect from taking it? do you have symptoms other than tics that you see improvement with? i've never heard of it. yes, unfortunately, you are wise to watch your other children. my older ds, 10, does not have an official diagnosis but has exhibited symptoms. his onset included not being able to be on a level of the house without another person present and 'bad thoughts' at night. he had high strep titers and tic borne illnessess. good luck and i hope you have seen the worst!!

YES -- i consider my ds8 to be thriving. it's been a long, hard road but he is at a good state of health and doing well. he had sudden onset at age 4.5. we discovered pandas relatively quickly -- a few months and he had 100% remission when he got on the right abx. unfortunately, he did not sustain that when he went off abx. we've discovered multiple bacterial and viral issues and have seen good results on treating them. we have also discovered a copper/zinc imbalance and vit D deficiency and are working to correct that. a little while after beginning that treatment, he seemed to have a bit of an exacerbation -- we recently discovered a few viruses back to trouble him. i'm hoping that when we balance those imbalances, he will not be so susceptible to the viruses and thus their effects on him. he was hit at a young age, so he is a bit behind in social/emotional aspects and we are in a bit of a muddled situation of what may be effects of being sick during developmental/learning years and what may be simply his personality -- i think it's likely a mixture of both. He's doing very well in learning the skills he now needs, but it is a process in learning - so i don't say he's back to age appropriate as if he was never sick. however, he does reach the bars we set just a step or a few past where he is currently or is comfortable. he's doing great in school -- academically and socially -- and in just getting there -- which all was a very big struggle for a long time. and, he often comes up with some very good solutions to problems he thought were going to stop him.

mama -- so sorry you are in the middle of this - as impossible as it seems now - you can and will get to the other side of this. i highlighted dcmom's points b/c although we had a different slant than her child (i think my ds had more real fears mixed in with the unfounded ones) (of course, dcmom, no intent to offend, would you say that's correct also?) and we worked with it differently, i believe these points she makes are absolutely key. for my ds, pandas hit at age 4.5 in the fall of his second half-day preschool year -- so quite early in his school career. that year and the following were back and forth as he enjoyed school again when he had 100% remission with the first abx and had fears and troubles again when he relapsed off abx. the next year, we were attempting to move in a bad economy and ended up homeschooling the entrie year. last year, was disastrous with an utter lack of compassion and understanding from the staff (with what i believe were civil right violations) that ended him in home teaching from nov - end of year and both of us with PTSD. we have a great psych who is frantastic with anxiety who thought he'd likely be better off out of the school system b/c they couldn't seem to understand him (as they were trying to send him to reform school with no evals and an un-acted upon 504) , would treat him as if he were bad and over time,he'd come to believe them. we have another psych who was previously a school psych and thought we'd be able to find people to help. so -- here we were this year with a spot in a great new charter school. and with ds in a good state of health - a pandas diagnosis, an anxiety diagnosis, a twice-exceptional diagnosis - pretty healthy but with a definite attitude of school refusal. ds had a mixture of unfounded and correctly founded fears. i think a large part of it was that he was anxious that something would happen that he wouldn't be able to handle and that was why he clung to me. again, sounds like your son b/c he had fears and b/c he had had actual things happen. last year, we worked with the psych discussing how to 'handle what he hated." that was good groundwork, but the real change comes when he is able to actually handle it. he began the school year with one hour and increased by 45 minutes -- the school psych wanted 1 hour, he wanted .5 hour, so they compromised. lunch was also an issue, so they worked some different plans about easing into to cafeteria. he was in full day by the mid/end of sept. the school pysch was very good in allowing him some leeway to feel confident and in having an opinion, but very strong in where she was drawing the line. in the end, i think that's the key and unfortunately, a lot of psychs aren't adept in doing that -- or aren't spending enough time to do it -- it's hard in a 45/60 min appt. ds now has an adult (teaching student) that meets him at the front door to walk to class. we'd lean on this in the am as one of his 'people to help problem solve'. so, when ds would throw up the issues, i'd say, 'that's a good thing to talk to mr. x about'. ds also had others set up as his problem solvers, so we could problem-solve at home that he could discuss that with one of them. he needed this b/c he was worried of these things -- sounds like your son -- if you could set up someone/somewhere he could go when he felt things getting out of control and that he would swear or throw. it may be that he never will, but knowning that he has an action to do if it does can be helpful in working the 'what if' of anxiety. my ds is still young, 3rd grade, and has missed much of the formative aspect of norms and rules of the past few years of school so this is helpful b/c he's kind of emotionally/socially a 1st grader in a 3rd grade world, so there are some accomodations to allow him to catch up. he's responding really well with that and increasing in independence. after thanksgiving break, he was refusing to go -- made it into the lobby but no further - wanted to stay home and read christmas book like he had on the weekend, yada, yada, yada. principal got involved and was excellent -- agreeing, 'yes, i didn't want to get out of bed and come today either - and look, here we are and here is where we belong today.' it was rough, but after i left, she said he breathed of sigh of resignation and went down to class. the last few days of this break, we heard, 'i'm not going back to school.' i said since i knew it was hard to return after a fun break, we had pancakes in the am - he got one sticker on his challenge chart for cooperating at home and one for going into school with nice manners. this is now motivational to him -- in the past,he was too involved and/or too in exacerbation for that to work. the clincher was an extra 10 minutes to play the new lego batman wii. yeah, it's a lot of bribes but it is very difficult for him to do and one psych framed it to me that it was a reward for practicing something difficult. he jumped out of the car and ran into school. the focus was on the extra time, not the anxiety of what he couldn't do. for us, we needed the helpful staff of the school to be on board and work intensively with us at times. we didn't have that last year and it was disastrous. that proactive intervention has made all the difference this year. without it, we may have had to do something like USF. i imagine there ds would have uncovered fears such as trouble with writing, getting in trouble, not having his concern understood by teachers that may have helped shuttle him into class like dcmom's dd. so - we reached a similar end, b/c he encountered those as the day went on - but would not have been able to without the supportive staff of the school. no way that would have happened with just me and our private psychs (even though i think they are good). and last year's debacle was partly due to that the school yielded to my expertise and i ended up in the school acting as his aide which wasn't helping his independence or ability to see he could handle what came up there. have your read Ross Greene's book Lost at School. it's kind of a sequel to Explosive Child and deals specifically with school. i've found it very helpful. for us, this is kind of the long version of success. i'm encouraged and hopeful we are all doing well. if we relapsed(not in pandas, but in school refusal) and weren't seeing progress with the school team, i think i'd seriously consider USF.

SFmom -- would it be your opinion that a person with gestational lyme would never test positive via an antibody test? thanks.

i agree with tpotter that the separation anxiety is a big symptom!!! we now see an integrative MD -- my ds10 was having some breathing trouble with basketball -- his symptoms 2 years ago included breathing issues -- conventional medicine would have had him on an inhaler for the rest of his life for exercise-induced asthma -- integrative MD believed him to have tic borne illness -- treated him -- breathing issues improved. this summer, he showed signs of myco. seemed to have improved. integratvie doc believes this is a symptom --myco is not gone and is still trobulesome for him. he said, "people don't have symptoms for no reason". great quote!! treating now -- 2 weeks now -- he ran around the outer college basketball stadium the other night 2 times and only had heavy breathing i would expect after that excertion. quite different from weeks earlier. years ago, with ds8's onset, ped told me of a story where a beautiful, capable, going places 18 year old girl fell apart when she went to college -- had to drop out after a year b/c was a mess. all thought psych issues that she couldn't handle it. many docs couldn't find a medical reason. he suggested running ASO -- it was high. they then discovered she had had dental work the summer before college. they left some cotton in her gums and it was strep infected. they removed it, treated infection and she was back to her prior self. that's my traditional med ped who was involved in that story!! just my advice -- i would not back off the symptoms your child is showing or that high ASO!

maybe this will give you a chuckle. i remember posting it a few years ago b/c one day it popped into my head that this was the house in which i was living! http://www.youtube.com/watch?v=iddPZEYUfsQ

i agree with the others that i think things this severe may often have a biochemical/infectious cause. so, discovering that is extremely important. however, you also need some coping mechanisms. my ds carries an anxiety diagnosis, not OCD. except in exacebation, it really is anxiety without a lot of OCD background such as rituals, reasons, etc. but i really believe anxiety/OCD to be on the same spectrum -- at various times, one can fall in many different places on that line as to the cause. for ds, when healthier, he usually just has anxious fear. when not as healthy, he has 'just right' OCD issues. when in bad exacerbation, he's had extreme contamination food issues. so -- what i am trying to say, is your daughter's screaming could be due to something that is extremely real and terrifying to her at that immediate moment. later, when calm, it could even (and sounds like it is) baffling to even her. so - you need some techniques to get through those moments. you could try to search this forum from the past for some posts and advice from the poster 'megs mom'. she's not her so much anymore but offered some stunning gems of help. for my ds, one time we were able to uncover that his utter uncooperation and defiance over leaving the backyard baseball game at the argeed upon time was not due to defiance but instead due to the fact that at that time, he was on second base and if he left without coming home, he'd be stuck on second all night and just couldn't allow that to happen -- he had to finish the base running. - a just right, need to finsih issue. for us - that could have easily turned into a screaming battle. it's possible your daughter is experiencing something like that that makes perfect scary sense to her at the time but she is not able to communicate it and ask for help finding a solution. have you read The Explosive Child? i've found it a great help -- not so much in changing the behavior of the child but in giving coping techniques to the parent. the repeating can help you from getting dragged into the screaming mess and may help to get to stoping the screaming and getting to the problem and finding solutions. you can find some info at the website 'lives in the balance.com'. Good luck. i know it sounds unbelievable at this time, but once you find some coping and get to the root of the infection/biochemistry -- this will fade in your memory like potting training troubles do.