smartyjones

i know i am a broken record, it's just that we have found much help with the technique in many situations -- i need to go back and focus more on it. i love the repeating technique from the book the Explosive Child. in that book, it is used to calm an explosion and find out info about what is happening in the child's mind. we have used it to glean more info about what may be happening in ds7's thoughts even not in explosive situations. so, you could use it after you state a few facts about the classmate. you repeat what your son has said, either just straight or with a 'really?' or 'hmm' or 'why?' or ' you think?' , etc and see if he can lead you into understanding what he is thinking and how it is affecting him. it's takes patience and practice b/c the natural human inclination is to rush in with what you want to say and how you want to comfort and avoid any trouble he may be getting into, like triggering what you know to be ocd thoughts. good luck.

hi tico - i read your other post also. he is 9. if not that his younger brother has diagnosed pandas -- i now call pitand, multiple causes or mcis, multiple chronic infection syndrome -- his syptoms could easily have been written off as a phase, albeit troublesome but just an extreme phase or seen as having roots in that we are trying to move and homeschooling, so there is some upheaval there. his separation anxiety has been in the form of not being able to be by himself, such as on a level of the house by himself. my younger son presented with extreme separation anxiety from me and school phobia. now, he has issues with separating mainly focused on his brother.

i know you asked for long-term success and this is our short term success i posted on the lyme board so just thought i'd share here. . . this is 2nd child with troubles, ds7 was diagnosed 2.5 years ago; ds9 had troubles in the fall, not severe but that made us think something was up - i remarked to dh, 'are we just waiting for him to fall apart before we bring him to dr?' i guess we were b/c about a week after i said that, he had more troubles. we see an integrative MD who treats with homeopathy. just wanted to share and say thanks. . . ds9 just ended a great baseball season for him tonight. he pitched the last 2 innings and kept the lead -- allowing only 2 runs, getting a few strike outs and pulling off a good defensive play. he had troublesome pandas symptoms in the fall -- getting up to pee at night, separation anxiety, 'bad thoughts' at night, knee and ankle pain, often stomach pains, high strep titers. late dec, diagnosed with strep, all TBI (well, the major ones discussed here), a few other viruses. did well initially with treatment. tanked in feb/march due to what i now think was mostly a bad reaction to a probiotic. this was the same time baseball practice started and he was having poor attention and cooperation, intense reactions to slight injuries, anxiety at coaches correcting him, poor endurance and shortness of breath with exertion. we weren't sure he was going to be able to play the season at all -- he loves baseball and this would have been very sad. this year is a step up into more serious play, but coach was helpful and supportive . ds said he wanted to be a part of the team as bat boy, which he did for first game. then spent a month or so in the outfield and last on batting line up. as his health was improving, he faced one game that 3 big fears occurred - getting hit with a pitch, had to steal a base, and faced a former teammate who is a great pitcher. last 6 weeks or so have been great -- he's back to being an aggressive player and stepped up to try pitching with great results. thanks to all for help and support when he (and I) were struggling in the spring! still having some trouble with overreactions and dissappointments but hopeful we're on the right track.

i am extremely confident that if not for a very savvy behavioral therapist, my ds7 would have been put into the asperger camp. he wouldn't technically qualify for the diagnosis but had behaviors that would have pushed him down that road. i usually say 'asperger-like' behaviors. good luck in finding answers with the DAN.

just wanted to share and say thanks. . . ds9 just ended a great baseball season for him tonight. he pitched the last 2 innings and kept the lead -- allowing only 2 runs, getting a few strike outs and pulling off a good defensive play. he had troublesome pandas symptoms in the fall -- getting up to pee at night, separation anxiety, 'bad thoughts' at night, knee and ankle pain, often stomach pains, high strep titers. late dec, diagnosed with strep, all TBI (well, the major ones discussed here), a few other viruses. did well initially with treatment. tanked in feb/march due to what i now think was mostly a bad reaction to a probiotic. this was the same time baseball practice started and he was having poor attention and cooperation, intense reactions to slight injuries, anxiety at coaches correcting him, poor endurance and shortness of breath with exertion. we weren't sure he was going to be able to play the season at all -- he loves baseball and this would have been very sad. this year is a step up into more serious play, but coach was helpful and supportive . ds said he wanted to be a part of the team as bat boy, which he did for first game. then spent a month or so in the outfield and last on batting line up. as his health was improving, he faced one game that 3 big fears occurred - getting hit with a pitch, had to steal a base, and faced a former teammate who is a great pitcher. last 6 weeks or so have been great -- he's back to being an aggressive player and stepped up to try pitching with great results. thanks to all for help and support when he (and I) were struggling in the spring! still having some trouble with overreactions and dissappointments but hopeful we're on the right track.

prior to my strep, lyme, chronic infection education. . . i had heard of the 'herx-like' reaction due to die off of treatment for yeast, not other infections. in alternative medicine, it can be an often occurrence and is usually referred to as a 'healing crisis' or an 'aggravation'. so, yes, i believe the experience of symptoms worsening before bettering can be due to many treatments and many pathogens. in our experience with ds7, he experienced his most obvious 'herx' due to the addition of an anti-viral. he had severe OCD contamination concerning food and handwashing. this had not been symptoms previously. looking back, there were signs of this during the first week; extreme during the 2nd and part of 3rd week; began gradual melting away after that. ds9 had improvement with treatment without aggravation. after about 6 weeks, i added a new high level probiotic. after 2-3 weeks, he had new, very troublesome symptoms. they improved about 2 weekss after i discontinued the probiotic -- which he was on about 6 weeks. the dr also believes this probiotic was troublesome for him. just from my experience -- and not at all substantiated except for my kids -- i'd say a prolonged worsening with no improvement may not be herx. i also think i've heard of most herx reactions being rather quick in showing up. i'd think you'd have to see some improvement on some level, or improvements in some areas and worsening in some areas after a rather short time -- like within 1-2 weeks. we were in very close touch with dr for ds7 b/c obviously very worried that this was eating refusal and was only on dr recommended meds. i wasn't so much for ds9 b/c i didn't dream it was the probiotic, which i added -- had discussed probiotic with dr but not specific brand. i now kick myself we didn't discuss that in depth with dr.

what is your dr suggesting to do? i am definitely concerned that viruses may be an important part of the PITAND/MCIS puzzle. i believe there is a member who may have switched to the lyme board who had a daughter that was on antivirals for hhv-6. you may want to post there to see if you can get an answer if you don't get much here.

yes - we could not find an alternative and it is very frustrating. luckily, we were only using motrin occasionally. ds was/is on homeopathy and when i asked dr about other options that could be fast-acting as a sub for motrin, he didn't really have suggestions, other than being patient on long-term action of what we were using. i wonder if boswellia could be helpful. my mom used to take that for back pain.

i'm happy you have found some things you may find helpful. just to mention. . . i quickly looked up the ibouactin b/c i thought it would likely contain white willow bark -- it does -- which is an ingredient i believe is what aspirin is "based on" --( using terms loosely on a sunday morning) and may have some silimar properties. admittedly, i haven't done the due diligence but i avoid white willow for my son, (also, i avoid herbs for ds but we use homeopathy) -- you may want to check that carefully when deciding to give that to a child.

i know not the main question in this thread, but. . . how about those that are just outside of the umbrella of ASD -- how many of those also have underlying infections just not creating symptoms 'troublesome' enough to warrant a diagnosis -- or having ADHD or behavioral issues. ds wouldn't have qualified for asperger diagnosis but had 'asperger-like' symptoms. if not for a very savvy behavioral therapist who thought behaviors sounded like OCD, and trusted my statements of sudden change, (others blew it off as i was unaware until it reached breaking point) --although myself and all other professionals consulted did not pick up on this -- and suggested checking titers -- we would have tried to treat ds behaviorally for years.

i certainly hope it won't get into food issues for her. just in case, bed bath and beyond has a chopstick like plastic thing that is a combination of a large clothespin and chopsticks -- very easy to use and may be acceptable to her if she needs something to help eat. we found them after my son had food contamination issues and got them just in case but now they use them for fun. please keep me informed about the appt. i'll be very interested to hear how it goes. good luck.

as far as therapy type help -- i have found the most help from anxietybc.com. more so than from a behavioral therapist, psychologist and psychiatrist. there are suggestions on discussing it with her and charts and plans. i also e-mailed them with requests for help -- at the time, my son had severe school phobia -- and they were quite responsive.

okay -- i'm losing it! today i picked up ds9's The Strange Case of Origami Yoda -- kind of like a wimpy kid book. i read it and laughed and laughed out loud -- at 4th grade boy humor! don't think that's going to win me a Nook either! i'm putting The Help as my goal.

jenny -- are you familiar with dr. kenneth bock? you might like his book - the title is something like "the 4 As -- healing the new childhood epidemics - autism, allergies, ADHD and asthma". there is a forum member that i believe used to see him as a dr. i'm pretty sure this was the first book i read when ds was first diagnosed. i don't remember specifics but think it gives a good overview of the concept of those issues and other behaviors being related to toxins, infections, general overload, etc.

not sure if this will be helpful for you and is a little different than most -- but my ds was 4 and a half at onset and you said you were looking for similar age stories. at the time, we thought ds had an allergy to penicillin. he'd had a reaction twice to abx -- later i discovered it was actually one to a penicillin and one to a cephalexin. however, i don't know abx so much and get confused with the generations, etc. anyway, he had high titers and a positive culture. he was put on 5 days of azith and did horribly. all troublesome behaviors, some of which had gone, came back with a vengenance. we much later discovered lyme -- could have been a herx reaction or simply a reaction to azith, although he had been on it before w/o trouble. we switched peds and a month or so later, he was put on 30 days of keflex, without titer check or culture. sinus CT showed all 6 cavities infected. he had 100% remission in about 3 days. unfortunately, it didn't last. he relapsed about 30 days off abx. again, went back on but without such dramatic results. good luck.

my kids signed up for our library summer reading program. this year they are having an adult version. you rate books you've read and for each rating entry, you're entered into a drawing for a color Nook. i assume it's fiction books and not the rating of my usual reading list. could i possibly do an entertaining book ? right now, i've got jenny mccarthy and her dr, how to heal autism and i just picked up one i ordered on auditory processing disorder. could i actually read a fiction book?!

jenbug -- i see this is a few days old. how are things now? i can't remember from the list vickie recommended - but did you also check webpediatrics.com, dr k's site? it has some good info on it about what you are describing. it sounds very much like my son when he first presented symtpoms -- at age 4 and a half. perhpas it is the age when presenting -- i don't know -- but sounds very similar. beligerent is exactly the word. once he had to leave a grocey store for such outrageous behavior, sat on a bench with me crying and upset that dh and other son were still inside -- very remorseful and calm. they came out, we got into car, ds jumped over seats into driver seat, honking horn, jumping, yelling wildly like a crazed person. obsessively naughty - yes. doing things just to annoy. wild inappropriate dramatic over-reactions to things. screaming 'butt, butt, poop' in a shoe store -- he previously wasn't one to do a lot of butt talk. yelling, 'mama is a penis, mama is a penis" when i told him he couldn't do something. when i told people, they'd say, "he's just being a boy, right". NO! this wasn't his previous personality and you'd have to see it to get it, but it was infused with this wacked, 'wrong', type of energy. i very much think what you are describing sounds like pandas. i believe there is also an integrative dr in Denver who deals with multiple types of infections, if the pandas specialists seem out of reach for you. for us, ds had clear strep indicators. this kind of wild stuff calmed down when we went to a naturopath who was treating for gut dysbiosis. not all symptoms went away, but this beligerence did. he then had 100% remission after about 3 days when he got on the right abx. it didn't last as he relapsed after about 30 days off the abx. we later discovered multiple infections. good luck finding help!

nancy and vickie -- as always, thanks so much. i haven't had a chance to see the cunningham presentation yet. i have the one from dr. k's website of the drawing of a girl from 2006. it is also very illustrative of the difference. i thought the microscope was on dr. k's - maybe they took it off with an update or something. i'll see what i can get from the presentation. thanks. a big thanks also to trudy and jan! i had referred this tutor to the presentation previously. it's so very good to have that as a reference for other professionals. i can imagine it's daunting for a professional trying to help -- this guy said, "i've been trying to learn a little about pandas - but i'm discovering it seems hard to learn a little about pandas."

we have an appt with a tutor on thursday. ds has writing issues -- refusal for the past year - i think based on some trauma at school the year before when it was difficult and was a source of confilct with teacher. i am not sure where ds stands now with it b/c refusal is likely mixture of real trouble and memory of trouble. anyway, i had mentioned the microscope drawing to the tutor but now don't seem able to find it to bring a copy to show him. does anyone know where this is so i can show it? thanks!

my ds is also 7, just turned this weekend. i am a huge fan of the book The Explosive Child. we use the repeating technique often for various situations. it's helpful to keep in mind that whatever is happening during the 'rage' (and i use that rather loosely - not always a rage but the impulsiveness that you are talking about) - where there is really a lack of awareness and rationality so not so much of what you do or say is getting through. ds is in a healthier state now, but still has some issues with inappropriate reactiosn. i find it most helpful to adjust my expectations and treat him as i would a younger child- still there are things you don't allow, but you have lesser expectations of the child's abiltiy. i more step in to stop it b/c i think it's not so much a choice for him. there are certainly things that are not allowed -- hitting brother, throwing, rudeness - the other day he was working on a kinex roller coaster to fit pieces together - every time he clicked in piece, it clicked out another - you could plainly see it was incredibly frustrating. as the frustrating grew, he started with that it was dh fault, etc -- then onto dh 'is stupid' etc. i grabbed him up, took him in another room and made him sit with me saying that i understand he's frustrated but treating us like that is unacceptable. he is at a point that the interruption of activity, while he gets mad, is enough to stop the chain -- more on the level of a 4 or 5 year old. when he was less healthy - he was just out of control, and we'd have to step in like a 2 year old and it would go on for much longer. later we'll discuss it he is usually able to rationally know the situation. i'll then not allow whatever he's doing that's inappropriate but i won't add other punishments. another - he was at the hotel pool with his older cousin he likes to get him wound up. somehow, he ended up throwing towels in the pool. he would have thrown the whole pile b/c it was so funny. i grabbed him and sat with him to stop it. for him, once he's wound on something, i really do think he loses the abiltiy to stop and i have to jump in -- just like a 2 year old, not really a 7 yo misbehaving. so - for my ds, one of his major issues has always been inappropriate reactions. i feel on a rational level he understands what is appropriate, so i don't feel i need to have things to 'teach' him that. the problem is that he flips into the inappropriate. i also don't feel this is a 'learned' problem but a problem with brain interaction as a symptom. so i don't try to teach him anything - but rather i step in to avoid or stop it. i do discuss it later and depending, he may lose something - playing downstairs with brother for the day if he's hit him - but i try to keep it like i'd do for a much younger age.

have you seen this? http://www.townsendl...ildren0710.html i don't know much about this website - it was posted as a good source on the pandas forum, then the poster recanted -- i hadn't really checked it all out and don't know that it is/is not a reputable source. however, this is an article of a presentation from dr ann corson - so of course, may have writer's embellishment. it may be helpful to you as it discusses other infections so you're more prepared to discuss with the dr. issues that may be going on.

hmm -- i was going to respond that i don't think all that common - then i see lismom has responded. i'm not sure. i would have never dreamed it was the probiotic that was troublesome. i kind of thought, the more the better. i've since found out that is not the case of all people -- some chronic fatigue websites caution against taking probiotics 'willy nilly'. it was only due to a post on the pandas board that got me thinking. . . and then researching. do you know if the ART dr will test supplements you bring in? i'd say first, find that out. if it's only a couple weeks and you can test, i'm not sure if you should wait and test or try stopping - ?-- so many hard decisions in all this! my ds was doing well -- about 6 weeks into treatment, when we started -- it was 6 strains, 25 billion. he is not on abx so we are not in catch up game of trying to repopulate while killing off. in about 2 weeks, he starting having the troublesome symptoms. we went for a special visit with dr a couple weeks later, due to symptoms. infection healing looked on track -- we thought could just be morphing of symptoms. darn it -- i had probiotic in my purse to check but forgot -- at that time, didn't think had anything to do with it. there was a post about th-1 and th-2 reactions and probiotics that got me thinking. i wrote to the company and asked for info -- they suggested i try the d-lactate free formula. i started researching d-lactate acidosis -- usually only in kids with short bowel resection b/c can't properly digest the carbs and the probiotics. it's a bizaree turning sugar into acid in the GI tract. the universal feature is impaired mentat status - sleepiness, stupor, slurred speech, headache, hyperventilating -- usually requiring hospitalization. however, lesser symptoms are aggression, inabiilty to concentrate, agitation, carb craving, 'unhappy', irritablity -- exactly described ds! these were not his presenting symptoms that we initally sought help for. i took him off it. 10 days later, still the same. added s boulardii b/c thought that is different in the GI tract and may help. 2 days later, he was better than had been in about 5 weeks. a few days later, he tanked. took him off s. boulardii. took about another week or so and then saw improvement. i've found conflicting info about what strains promote lactic acid -- usually a good thing to inhibit the growth of pathogens and stabilize flora. some say l. plantaruim and l. salivarius promote much. ours had both those. others say l. acidophilos -- which ds has taken without a problem, but at half the dose of troublesome formula. d lactate free probiotics seems to be an issue discussed in the autism community. i've also read lacto GG, which is culturelle, can successfully treat d-lactic acidosis. i didn't try this b/c i was concerned about throwing more worse after bad and creating more troubles. i wasn't sure if would show as bad with ART if is a complicated reaction but dr tested and said, "i don't know what's in that, but it's not good for him at all.' he has previously okayed things i've brought in so i don't think he just wants to promote his recommendations only. hopefully, you'll find some answers in a few weeks. oddly, ds has always been an avid reader. during this time, all he wanted to do was read -- probably read a year's worth of books in 2 months. is there anything she can find engaging for a few weeks before you get to the dr?

nancy -- such a beautiful post! as tears pop from my eyes, i realize how we all cry together in our trials that allows us to also cry together in our rejoicing! i'm so happy to hear of his success and that you will close the middle school chapter on a high note! enjoy the celebration!

laure -- sorry to hear things are rough. i have no insight into your question of ivig but wanted to comment on ART. we see a dr that does a kind of a form of ART and have had good success with ds6 and ds9. ds6 was more complicated and first son to show pandas symptoms. we were treating with abx and had longer illness before seeking help from integrative MD, who diagnosed muliple infections. after a little over a year of treatment, he is doing well, working on last infection. we'll reevaluate when cleared of infections -- not currently 100% but almost -- unsure if remaining issues are part of his personality - innate or "learned' after 2+ years of illness - or other effects such as auditory processing, again, innate or illness induced - ?. but, have seen good results with this path. ds9 has seen quicker results. had a few things i questioned b/c of younger son's diagnosis -- ie. extremely poor sportsmanship. last fall, saw big downturn, some classic pandas symptoms. integrative dr diagnosed multiple infections - strep, all TBI. he saw quick results with treatment. took a big downturn after i started a high level probiotic. improved when off that. through testing, dr said that probioitic was very bad for him, he registered much irritation with it. since off it, he's steadily improving. also, just found a new or newly uncovered virus -- more improvement when treating aggressively for that in last few weeks. i question the role of viruses in all this. i believe ann corson has some good info about virus involvement. i mention that b/c you mention no herx and no responce to quitting abx. i think the relationship btwn the bacteria and viruses is complex. our dr talks of the 'alpha dog' concept (this is all my interpretation) that you may have many pathogens but one is presenting stronger and if you rid of that, another may gain strength and cause trouble. our theory is to rid or at least downgrade all the troublesome infections. lately, i have wondered if some of ivig success may be doing that b/c some of the infections are ones that are common but don't cause such extreme problems for the general public but for some people they are extremely troublesome. good luck. i just wanted to share our story of a form of ART that has seemingly been a good path for us.

would you mind a PM to me as well? we don't see him but he was recommended to us a while ago and i like to keep up with info -- esp local. thanks!