smartyjones

phasmid -- i believe yes, my son exhibited a form of coprolalia. he was 4 1/2 at onset and that is mostly when it was. one thing i am unsure about is with coprolalia -- do they say things they have never heard? i had once heard that. my son did not come up with things he had never heard. but i believe he was using the worst words he knew at the time. had he known others, i think he would have used them. once he stood on the porch searching his mind for something -- when i write that, it sounds like just a mad kid - but it wasn't, it was different. he was very hyper in a shoe store and was running around yelling "butt, butt, poop". dh carried him out with the unpaid for shoes on. now, it's comical - at the time, i was simply in awe of what was happening in our lives. i think this was just before we even heard of pandas. it did not seem like he did it as a tic, it was more in a hyper wild state. he really didn't have tics. at the time, i said he had none. now that i know better, he had some things that could probably be classified as such. one time for about 2 minutes, he had rapid eye blinking. other times, it's been things that would be hard to decipher if they're tics or mindless habits.

buster -- so how do titers that take a long time to fall come into it? my ds did have high titers with initial episode. 20 mths later, his ASO was much lower and anti-DNase B almost nothing. however, if this was the first time taking titers, one would believe ASO to be elevated -- and thus, believe he had a recent infection. 6 mths prior to that titer test he had a negative culture. of course, we know he has a screwy reaction to strep so perhaps that throws everything anyway. i do actually believe he has a stealth, hard to eradicate infection -- but, according to traditional medicine, he tests neg with a culture and has falling titers -- so according to present understanding of titers, this would show past infection that he's gotten over, right? the assumption is that strep is no longer a problem in and of itself, right? my older son, had high titers -- higher Anti-DNaseB -- so the assumption is the infection was longer ago -- i actually think 3 mths prior to titers. i guess the question is -- is there really any way to know when the infection was and if it has actually cleared? we can't really use titers to show clearing of infection, can we?

hi Kara. i know it is so disheartening when a child has been doing well and begins to backslide! you're asking the question, so my answer is yes, i would suggest checking for other infections, if she is not doing well or is backsliding. have you ever tested for other infections or just worked with strep? my ds had clear strep indicators -- high titers and positive culture. then, 100% remission on keflex. when off the abx, he backslide. when we investigated further, he did have other infections. i do think it can be "just" pandas with an "S" but when kids are not healing, it can be wothwhile to check. at the OCD conference, i was struck that almost all the drs said they were aware it was not only strep causing the troubles.

i am surprised to see such a small portion of the pandas ellipse solely in the OCD category. do you only have OCD and not other symptoms like ADHD and asperger-like behaviors, etc because you are doing a diagram of "literature supported evidence"?

for us too, many of ds's issues fall under the realm of sensory. i recently found the book When Labels Don't Fit very helpful. it had some specific techniques to implement that we found very helpful. just in our situation, not saying this is yours, last spring, we thought ds was doing quite well. he had had an exacerbation in the fall that seemed to take a long while to get out of. but, after the holidays, into the spring, we believed him to be doing rather well. we discovered at our spring conference, that was really not the case in school -- and i thought i was in quite good contact with the teacher. eariler in the year, i had found an integerative MD that i wanted to go to. dh wasn't so eager - $$ - and we thought things were good. after that conference, we did go to that dr and found a couple other infections, as well as strep still being a problem. just my opinion, from how i read the symptoms you list, i'd say those are pandas symptoms. it may be that he isn't displaying this as often as previously or only in stressed situations. have you spoken with the dr who prescribed the abx?

not sure if this would help . . . i seem to remember some time ago, there was discussion about a weighed vest that was helpful for some kids. it was like a jean jacket vest and had weights. i have no OT background so i can't remember the theory. would something like that be helpful. i think some found success in putting on the jacket when trouble was brewing. anyone?

i'd have to say i second what ozimum has said. my son has pandas, no tics. when we were first investigating causes for his behaviors, we saw a naturopath who ordered a food IGG test. it came back highly reactive to many foods -- all dairy, most grains, eggs, peanut. we immediately eliminated those foods. i have to say it is overwhelming, but can be done. i have not seen results that i can pull back to the food issues. he has had exacerbations of behaviors and good times while eating a restricted diet. my thoughts now are that his immune system is screwy and i don't want to add to it with the foods. i think that he was overloaded with infections and just couldn't process those foods -- which many think are difficult for most of us anyway. we are working to clear the infections and i hope to reintroduce foods when the infections are cleared. yes, for a person with celiac, they must be super-vigilant -- one bite of pasta can cause problems. in that case, a person with celiac would probably need clean utensils, etc. we have not been so vigilant. i also have to say that while not impossible (and actually, after a rather short time, it becomes fairly easy) it is quite an undertaking. i most likely would not have done it if i had not seen that test results with so many off-the-chart results. it's not that it's hard to find foods, it's just that it is so different from the way most people eat. my ds doesn't eat fruits and veggies. if you ate fruits, veggies,, it's much easier. we did the cold turkey approach and i think it seems easier than trying to do it slowly. we consulted a traditional allergist who all but laughed at the result saying an IGG test means nothing. however, he certainly couldn't give me any good cause for my sons issues, so his opinion didn't carry much weight with me. i also know of a dr who works with autistic kids who says he cannot cite any studies that give results of GF/CF yielding results, yet he has a boatload of parents who swear by it. another thing to think . . . is there any connection to tics and any particular food? i have a friend whose kid acted wild only at certain times. they realized it was when she had a day off or he went to his grandmother's. those days, he ate waffles with syrup that had high fructose corn syrup. they eliminated HFCS and corn and saw the troublesome behaviors resolve.

thenmama -- i cannot say that i am saying this is your answer, i will only tell you of our experience. when ds first exhibited pandas symptoms, we were seeking help from many avenues. he had some improvement from a naturopath with treatments aimed at healing gut. we then got the high ASO and positive culture results. our useless ped at the time, threw him on a 5 day course of azith. it was horrible. many symptoms that had some resolution returned with a vengenance. he would follow me all over, whining about the problem of the moment; separation anxiety stepped up; he was anxious, impulsive, very whiny, unhappy and couldn't settle on doing anything. at the time, i thought it was a reaction to the azith (still could be the reason). i was so happy to get him off that. we finished the 5 days. he improved when off the med. we saw a new ped a few weeks later and he put him on 30 days keflex. a sinus CT showed all cavities infected. he had 100% remission in about 3 days of keflex. unfortunately, that didn't last. due to not complete resolution of symtpoms, we looked for other infections, and found them, including lyme. there's no way to now know what that reaction to azith was. could have been a herx due to lyme. could have been a bad reaction to azith. could have been a just unknown. i do know it would be extremely unlikely for me to ever have him on azith again.

we don't have dry hands due to washing but due to cold and being outside without gloves. i've used vitamin E oil with success. this year, they've let me put it on. i've done it also after falling asleep. it's a bit oily but not too bad. for when asleep, the advantage is you don't really have to rub it in, you can just put it on quickly. but, if hands are really dry, it can sting when it first goes on.

hey - thanks for posting. . . we have it's not the stork and i very much like it. been meaning to get the next one and haven't gotten around to it -- thanks for reminding me. my kids are younger but we read it together much and they have gone through phases of very much reading it on their own when it's just been on the bookshelf with all the other books. older son is getting shy and was even shy when we were talking about life cycles of animals. . . so i was definitely planning on having the next step book sitting around b/c he's getting to not want to talk/hear about it. (from us anyway) don't think he'll be reading that with us. i think dcmom has it right. . . i remember when they were much younger similar feelings about talking about death. . . i didn't even tell them one of the goldfish had died until the neighbor boy noticed it. i then tried to bring it up casually -- leaves dying in the fall, flowers dying, squirrels dying - the circle of life. the more i did it just in passing, the easier it got. have to start it about sex too. thanks for the prod!

my pandas ds, now 6, had sudden onset pandas 2 years ago. clear strep indicators. 100% remission with keflex that didn't last. we later (this past spring) discovered multilple infections, including lyme, no co-infections. my "non-pandas" ds, 8, does extremely well in school, has many friends, other parents and teachers love him, plays sports, has many interests. he also has some issues that really only a pandas/pitands mom would pick up on. sometimes has inappropriately disappointed reactions; extremely poor sportsmanship(beyond normal 8 yr old); can shut down with adults; is an extremely picky eater; sweats a lot; can be indignant at times. other people seeing these would not really think is that different from a normal 8 yr old being moody or pushing limits. he tires very easily with sprints but can play a sustained game. he occasionally complains of ankle hurting or legs hurting, back hurting or legs being tired -- he also plays much sports -- street hockey, biking, football, baseball, so fairly explainable. 6 months prior to pandas son onset, ds8, had a few days that he couldn't walk due to knee pain. he limped or was carried at school. prior weekend, he had played first baseball game of the season and had fallen off a small porch. dr found nothing in general exam. at the time, i had a sinus infection, ds 6 complained of eye pain. 6 mths later, ds6 sudden onset pandas, with ASO 898. may be related, maybe not -- we'll never know. the past few months, ds8 has had strange symptoms. won't go on a different level of the house by himself. talk of concern about baseball cards being stolen -- needs a metal safe box for them in case someone breaks in. having "bad thoughts" when falling asleep -- won't divulge much but says sometimes is trains crashing. sometimes wakes to pee although never used to even after drinking much water at bedtime. has had stomach complaints - often after eating. we went to integrative MD yesterday who is treating ds6 and myself. he uses a sort of form of muscle testing. diagnosed ds with strep, (which i knew b/c he has eleveated ASO and anti-dNase ), lyme, all co-infections -- yes, babesia, bartonella, erchlicia; CMV and dengue virus (which he said there have been some outbreaks in Florida recently). of course, only treatment will tell if the issues we see him will resolve. i wanted to share b/c here's a kid that on the surface looks absolutely great with only a few small issues that can easily be explained (i mean before definite troublesome symtptoms of last couple of months -- although those could be explained as well with just normal transition of almost 9 year old realizing things to be afraid of) yet, he's carrying a lot of infections. i do believe that there are many viruses/bacteria that reside in our systems that may/may not be the culprits. perhaps it's only one or two that cause the symptoms that we see. i think often someone may be affected by a virus/bacteria that is only generally thought to be a problem in the extreme - such as dengue virus or west nile virus - but have it as a low grade infection that doesn't cause the extreme sickness associated with that agent, but they are still affected nonethelss. i'm becoming more and more convinced that many problems we see exhibited in kids are very possibly due to infections.

rocktop - i know this is not the solution you are looking for. . . have you read The Explosive Child? it's good to hear you have a pandas dr b/c it does sound that is what you need. i'm sorry to hear of her trouble. i don't recommend the explosive child for you to work on her behavior b/c i know how that is with a pandas child. . . i recommend it to give you some coping techniques that can help you when she is in a rage so that you are not a slave to it and you can have some element of control with where and how you want your reactions to be. the book is written in a manner of getting control and changing the child's behavior but that is not how i see it with a pandas child -- i see it as more a way to give a worn out parent some options. . . that's what it was for me. by using the repeating technique it enables me to be involved with my son when he is out of control without being dragged into it all.

ds is doing fairly well. at dr visit, about a month ago, switched a few remedies and have seen good results. he was having much sensory stuff -- swinging doors, sliding on boxes and cloths on floor, swinging pillows, napkins like lassos, constant movement and much striking brother and concern about fairness with brother. i've seen much improvement and the change is the remedy so i have to think it's due to that. about 10 days before Christmas, nonpandas brother had bad stomach virus -- hit bad. about 5 days before Christmas, pandas son gets it but slightly -- only a day or two, only felt bad before diarrhea, otherwise, didn't even seem sick. not run down, nothing. Christmas was a dream!! i am not complaining! he was sweet, focused, lovely to be around. normally, the internal and external excitement would have him bouncing off the walls -- quite literally. dh and i were marveling at how this med change was working! a month ago, things would definitely been different. next day, i woke up and remembered last year (feb b/c i posted about it) he had a stomach virus and we saw fabulous improvement in behavior. i find this so bizarre. on that post, people mentioned they see such with fevers. others suggested could be food triggers that are not being eaten. ds didn't have these -- he's already on a quite restricted diet. of course, his eating was off, but not really too much. no fever. no other symptom but diarrhea. yesterday, he seemed back to normal -- which is still good but some noticeable things. rather jumpy at grandma's house at dinner, loud - some normal symptoms for him. today, some upsets with brother. i don't think it was just that Christmas was a happy day with lots to do. we've had plenty of happy days with lots to do that have been disasterous. i do think he's doing well on current meds but think that day was somehow due to previous diarrhea. i can't get over how bizarre this is. any thoughts?

not as long term therapy for him, but as short-term coping for you. . . could you make deals with him? such as, "i'll turn off the TV this time and next time you do it, agreed?" i don't know what specifics you are talking about but this worked for us with ds. . . "i'll stand next to you in the bathroom this time and next time, i'll stand one step out" then it would be two, then three, etc. after the initial set up, i would only tell him the step we were doing at the time. he was not willing to discuss or listen to anything more than the one step and if he wasn't willing to do it, i'd reduce it or do what we'd done before. working the tiny baby steps seemed helpful to give me some element of control rather than being a slave to what he was screaming about and although sometimes, the progress was ridiculously slow, i felt better that we had some sort of a plan rather than everything being out of control.

oh tantrums -- so sorry to hear it! hopefully tomorrow will go much better. perhaps you could leave a note for him from santa my mom always sends my kids a short note the week before christmas from santa. this year, 6 and 8 (i can't believe the 8 yr old still believes altho being flat out told by a friend last year) they were so happy and relieved when they received the note. 6 yr old pandas (not exacerbation) said he was really thinking he was on the naughty list and was very happy to hear he'd be getting things. i was really surprised b/c we don't really push that. he then said he believes each person has their own naughty and nice list and whichever list of yours is ahead at that moment determines it -- so he certainly had a long naughty list, but it only takes a little more nice to be ahead. now for me, this is all pretty funny b/c he's not in exacerbation. the only things that would really get him on the naughty list are pandas related -- inappropriate reactions and striking brother, ODD. it was interesting to hear how he sees it. naughty isn't something we really teach -- we talk about using good and bad manners and treating people how you want to be treated - not reallly being good or bad. i was really surprised at their reaction to that note. i don't know -- just wanted to share so maybe it can spur an idea for you. i love the repeating technique from the explosvie child. he - "i'm not on the nice list". . . you - "you're not?!, really? hmm, i would have thought you were" he - "santa's not going to bring me anything." you - "he's not?!" for my son, it stops a lot b/c there's nothing to argue with and he realizes it doesn't make sense or just drops it. reassurance would keep it going. good luck. merry christmas!

LLM -- such a good, good point about being on your child's team. unfortunately, this is not something we always suceeded at but looking back, i can clearly see how our reactions/interactions helped him dig his heels in or helped loosen them. also, when things went south at school, i think this was a main contributing factor. teacher got increasing frustrated with him but i believe this is mainly why it spiraled -- she set up an opposing camp and wanted him to comply. what she got was a wall of non-interaction. anxietybc.com has some good worksheets -- thermometers like have been mentioned. we did not use them in the traditional way b/c ds was not cooperative. we used it as "steps" and i determined each baby step. i have been told it's more effective if the child is participating in determining the steps. i do believe this but - if you can't get that participation, you're dead in the water and need to start somewhere. he did not want to talk about/hear etc OCD, thoughts, etc. - it was not reassuring to him but the opposite. but he could work on one small baby step if i said it was the 'step of the day'. he loved Brave Ben about a boy who's afraid of everything and goes to seek help and courage from magic tree. we wrote a fabulous version about him going to school when that was a big problem. he made sure all was about another kid - not him. we got pictures from the web and he made them all cartoons -- none could be real life -- i think that seemed too real. also - ds had to work up to rewards. for him, attention placed on things - even good things - is a scary trigger to just retreat. sometimes, a quiet congratulations and high five is plenty, move on and don't discuss too much. i know this is rather different than most kids and something professionals (not so skilled OCD or ERP - we've had trouble finding help in the professional arena) have not really believed me about - but - i wanted to throw it out there in case others were not finding success with reward systems. we have used reward systems and he's been excited about it but - for him, it's an added bonus, not at all a motivating tool.

of course, all we hear and see is seen through our own colored glasses of our own experience - not saying this is yours but i will tell you of ours and see if anything resonates. 1 -- when ds was first in episode at age 4.5, he was dropping off the weight charts. he's always a slight child - small wrists, thin body -- after being 9,3 at birth - thank you very much. anyway -- he had active strep for who knows how long and tested on an IGG test for multiple food issues -- all dairy, gluten, eggs, a few other things. we got him on abx and took him off those foods -- his weight bounced back -- 4 lbs or something in 6 wks, which was more than 10% for him. i realized he had been refusing milk - i think he was feeling bad from it. i think these are physical causes relating to infection. 2 -- this past summer he had an intense herx-like reaction to an anti-viral and went into classic, textbook, contamination food refusal. luckily, it only lasted a short time with intense refusal for about 7 days. it was interesting b/c i think we saw in 2 weeks what usually may be 6-12 months. our dr thinks this may have been something that would have come along down the road w/o treatment. he slowly stopped eating if something wasn't right -- dh put a container of muffins on the floor of the car when we were going on a trip -- ds wouldn't eat those muffins b/c the container was on the floor. the next week, he asked about expiration dates. the next week or so, the intense hand washing and refusal -- he couldn't eat anything that had touched anything else -- anything -- plate, box, bag -- nothing. i now believe he had some thoughts that he would die if he ate that contaminated food -- more tragic, i think it may have been also wrapped up with a thought that he would deserve it. your ds could be losing the weight b/c of the infection's effect on his body. also possibly trouble with certain food like gluten or dairy as a secondary cause of the infections. he could also be restricting food in ways that you are not aware. i knew my son didn't eat those muffins on that trip (ironically to the OCD conference in July) but just thought he didn't want them. it was about 1-2 weeks later for the intense restriction that we were acutely aware of contamination issues. it was months later that he said something to let me know the muffin refusal was contamination related. is he in ERP for the OCD picky eating?

rnmom -- if you don't mind, i'm curious -- where and how big is the rash? is it the cat scratch stretch marks?

WHAT is the cause of tick borne illness rashes? specifically bartonella? is it the parasite near the skin -- bartonella is a parasite, right -- or is it bacteria? an immune system reaction? for both bartonella and lyme, the rash does not necessarily occur where the bite occurred, right? i totally understand a bite at the site of infection, even much later -- however, how could a bite on an arm result in a rash on a leg? does the size of the rash have any correlation to the strength of infection? thanks!

just curious -- have you done the cunningham now that she is symptom free?

i don't have insight into tics b/c my son doesn't tic. . . however, i have to think there is some relationship - - ds has times of being very loud -- i mean, his general volume, in a different way than just being a loud kid. i have to think it has a neurological basis. i do think there is some symptom of asperbergers that has to do with volume regulation. my ds has shown some symptoms of asperberger and i know others on this forum have said that.. i think if we didn't know pandas, my son's erroneous diagnosis would be low-level asperberger. he had a day recently of this loudness. he was generally cooperative that day and when we repeatedly asked him to turn it down, he did. although, short lived until we asked again. sorry - i don't have any tips.

NO forgiving -- just encouraging!!! Congratulations to him. I am proud of your son . . . but i also very much know much of his accomplishments on who is he and what he does he has to owe to a wonderful, wise mother!

mama knows best!! so glad to hear you've gotten an answer and i hope this will result in health for all! congratulations on following your intuition and pushing for answers!

thank you, thank you to my wise, wise forum friends!!

kara -- hope things go well for you at the visit. so -- your daughter has pandas and your son has no symptoms with those titers? sorry, not to make you worry about your son -- i've never gotten a good explanation from anyone i've asked (and my kids do show titer rise) -- it makes sense to me that if you were a carrier - and therefore, benign (although i don't believe there is such a thing), you would not have a rise in titers b/c the strep would be a non-harmful part of your bacterial make-up and your body would not need to fight against it. i am the last one that should be giving scientific opinions. . . but, i would think a rise in titers signifies the body is trying to fight something harmful.