smartyjones

i'm with you on your rant, norcalmom! my son doesn't technically have a pandas diagnosis b/c he's never had an ocd diagnosis. lucky for us, an astute behavioral therapist listened, observed and pulled up pandas. low and behold, high titers, active strep and 100% remission with abx. no one else we were seeking help from was on her wavelength. so far, it hasn't been an issue - but if i need school intervention in the future, will my ped write that diagnosis? i think . . . but am not sure. the criteria for study and diagnosis should be different!

hi jstone. my ds had a known strep infection at 22 months. pandas symtoms manifested about 2.5 years later. now, i am not sure if he ever kicked that infection - his only symptom was vomiting and the only reason he was tested for strep was b/c his older brother had a positive rapid the day before. older brother, then 4 yo had only one symptom also - white-head like pimples broke out on his face. one morning, he had many pimples that looked like teenage acne. during the day, they went down but never totally away. the next day, he woke up with them again. by the time we went to the dr around noon, they were down. she didn't think it was strep but tested anyway - positive rapid. he had nothing else - acting and feeling totally fine.

last night at a pool party, a 9 yo friend of my kids, got yanked from the pool b/c he smacked another kid with a plastic gun upside the head. my son later told me it was b/c they were playing some game and this kid was on a float and the other kid was moving a flap off the raft to expose his water gun. later when telling dh, i said i thought the accused seemed stunned when he was yelled at and yanked out. that got me thinking if this was a display of anger or an inappropriate fight or flight. this kid does seem to have kind of a controlled anger. i think he has some focus issues. he has at times argued with me when there seems no need to argue - kind of a quick reaction to defensiveness, not over the line and inappropriate, just strange to jump to argue. at a recent school event in a maypole dance, his rope broke and he was upset and panicked about what to do - but was able to roll with it, whereas my pandas ds would have been totally thrown and most likely couldn't finish the activity. he also is one of the more sweet kids i know. just a sweet heart, aware and concerned about others. he participates in organized sports and does quite well. extremely nice and involved parents. he looks strong and healthy - whereas my ds at onset had dark eye circles, a mouth rash and was dipping below 5%ile. i don't believe he's ever had a break where he just couldn't function - like my ds where you definitely know somethin' just ain't right. this last night got me thinking could this be fight or flight that seems disguised as a bad temper? of course, i see it everywhere. dh was peeved last weekend b/c i was diagnosing a friend of a friend at a dinner party - (btw, 3 of 4 kids have classic behavioral symptoms, 2 have chronic strep and one child has kidney trouble related to strep. the friend was concerned and interested in what i had to say.) i readily admit i think infections must be the root of so much trouble. yet, some kids may just have anger issues or ODD, yes? i guess i can agree but knowing what we all know. . . so, just from this, any opinions on this kid? do i, and how do i say somthing to the mom?

i've just started giving melatonin to my older, 8, non-pandas son b/c he was having a hard time getting to sleep. he's 8 and 71 lbs - .5 sublingual will put him to sleep in 1/2 hour.

so EAmom - i'm curious for your thoughts - do you think strep is at the root of all, starts the ball rolling and then other infections/exposures can enact the same response b/c of a screwy immune functioning? so, pandas becomes pitands. or could some pandas be not fully diagnosed pitands? i guess it comes down to the chicken or the egg and i don't know if it really matters but it is something my brain runs circles around. for my son, we've discovered some other infections so . . . was his body already overloaded and strep hit, causing an overflow and pandas symptoms? or did he have strep (known infection 2.5 years before symptoms, maybe never kicked it) and wasn't able to properly fight the other infections and then the overflow with symptoms? like i said, i guess it doesn't matter -- either way comes down to riding of these infections and keeping close eye on symptoms of return. i think there's no way to know except going back in time but just something i wonder. as if i don't have enough to think about . . .

kimballot - wow, really good info - thanks. can i ask you a few more questions? one of my ds,6, major issues is an inapporpriate fight or flight reaction. we've gotten into a good system if i am there, mainly based on the explosive child, of calming the situation and finding a solution. problem being -- i'm not always with him. his psych recommended a neuropsych eval to determine if/where processing disorders may lie. she suggested we wait until he is solidly into his 6th year and 1/2 way through 1st grade -- timing to be approx Dec 2010. a few months ago, i did read the out of sync child. i found it very interesting and saw him there somewhat but the more i read, the more i didn't see him. perhaps this is b/c it's pandas induced and so varies with severity and with his physical state of health - ? . so he may exhibit some sensory issues but not always in the same manner. i don't know. his school has unfortunately faded this spring with support and understanding. i believe his teacher has grown tired of him and just sees him as a pain in the a**. i think she has trouble that he is inconsistent -- sometimes a model student, other times, unfocused and bothersome to others (that's classic sensory, isn't it? -- the inconsistency?) obviously, i am not in the classroom so i don't feel i have a good handle on his behavior there. it's a private school so there's not much other help there. next year he will be in public with more resources. he's had a communication assessment and academic assessment through the public school system which he tested very highly on, so they don't see any issues. he's not in their system so they don't have an understanding of his behavior in the classroom to have recommendations on that. our current plan for next year is to obviously work closely with informing the new school and teacher of past issues, pandas etc. but really - they have to see him in a classroom to determine behavior. then we will have the neuropsych testing around dec. he does have inappropriate reactions when he gets hurt but not so much other stiuations, other than random incidents of cognitive inflexibility. his other big issue seems to be not being able to do what the teacher seems to think he should be doing. i am hesitant to do something like an OT eval b/c i don't find his issues to be constant so i don't know what they'd see if not observing a long-term situation like in a classroom. do you have any other suggestions or advice for me? thanks so much!

mom - fabulous learning vicariously through you -- thanks!

those using bentonite clay. . . are you using it to relieve stomach distress or are you using it to clear possible digestive issues that result in other troubles? my son does not seemingly have digestive distress but i do know how much that system relates to immunity. i will discuss with our dr at next appt but was curious what motivated you to use it. thanks.

yes - sometimes it is difficult to rejoice in the small glimpses of hope but they are there. my son has been in a private school but we've gotten evals from the public system and he will be in public next year. we are moving (hopefully w/i same county). i've been checking out schools in neighborhoods we like. last week, i met with a principal. i was questioning guidance counselor availability and how they would handle problems. she said she was not familiar with pandas but when i explained, her face brightened with recognition b/c she had a boy last year who had intense anxiety and they later discovered he'd also had strep. as tough as this fight is, i just still think about where we'd be if we were trying to handle it behaviorally and didn't know anything about the multiple infections he has. . . and the many kids that are in that situation.

i've posted recently about our now troubled relationship with ds,5, teacher. at some point this spring, after being helpful, she became frustrated with him. i think it stems from that she wants him to act like an almost 6 year old in keeping with his academic abilities. she's ignoring the fact that he is presenting like a 4.5 year old. i have repeatedly stated we don't really care what he is learning, just that he has a level of functioning in that environment. it's a mixed-age class, so there's 3-6 yo in the class with varied activities. i think she's just made things tough on herself. yesterday when i picked him up, he was sitting in a chair b/c he couldn't decide what to do. he said he didn't like 'hard' work like writing and math. had she been properly communicating with me, i could let her know this is classic pandas and perhaps he should do cutting or something else, even though she believes it beneath him. i wrote her an e-mail to discuss b/c i'm not sure how much time he is sitting in the dunce chair through out the school day. needless to say, we just need to finish these two weeks and be done. i daily question if there is the proper attitude for him to be there. today, she called b/c he fell on the playground and was unreasonably upset. he was "raging" and "destroying the office". my husband went to get him, mainly b/c it's clearly not a place for him if he's upset. he had basically calmed by the time dh got there. so - granted he was crying and repeating "i need to go home" and kicking a wooden desk in the office, and out of control for school but . . . lady - that ain't nothin', if you want raging and destroying, i can show ya ragin' and destroyin'!

i think it's pandas - my son does it with other things -- you can't remember you not supposed to write on the wall? you forgot hitting your brother isn't acceptable?

i know i'm an annoying broken record, but have you tried explosive child repeating in situations like that? at that time, you are not trying to teach better manners, etc - you are just trying to get through the blow up with everyone intact. so she whining and begging, you - "you don't like it?", "you want something else?" "please can you have something", "you need something different" -- just flatly repeat what she's saying to see if you can get to a point that you can get some movement without the blow up.

oh suzan - i know you posted in seriousness but i have laughed so hard at these posts -- from the peeing to the ex-chef with toothpick sandwiches! thanks for such good fun! unfortunately, i have nothing good to say. i do think it's related to pandas. i, too, am tired of cooking for my family. last night i wanted broccoli and rice, but what would everyone else eat?

interesting norcalmom - do you think he was low on those minerals b/c he was sweating so much or do you think his sweating was connected to low values of those? my older non-pandas son is a sweaty kid and i have questioned if his zinc is correct b/c he's a very picky eater. what test did you do that included those minerals?

betty - my son had a completely non-reactive western blot in june '09. i didn't feel he seemed on a good healing path in jan '10 after we had done much work for strep and he was culturing neg for strep. i asked one of our dr's if we should re-investigate lyme. he referred us to another dr who thought simply based on his symptoms, he very well could have lyme. he does something called auricular medicine and with his testing, my son tested positive for lyme. he has not really had tics (only some slight things that only in retrospect were possibly tics), completely behavioral symptoms. please keep us posted on the results!

llm - curious for your thougths - how would you ensure you've cleared the infection? a certain time-frame of abx? a negative strep culture? that's something i'm troubled by - in dec, my son was in exacerbation and testing negative on strep culture. i was troubled if that was enough to prove he didn't have strep. is that a definite thought that it's inflammation of the basal ganglia? it seems so to me for my son b/c he has a very positive reaction to motrin so it seems a plausible connection. i thought buster had said it wasn't so much inflammation but rather inappropriate chemical reactions. (i certainly could have misunderstood) or could it be that inflammation inhibits correct brain chemical connections. thanks.

our new dr - medical, who sees many patients with lyme and kids with adhd symptoms - has a child behavior questionairre for new patients. one of the items is "destroys things with feet". my son does this - like constantly puts his feet in the game box top and if any item is on the floor, he slides around on it. it drives me crazy. i do find a correlation with exacerbation. i've forgotten to ask specifically about that question so i don't know what he's looking for or what that item tells him. i'll have to be sure at next appt to ask. i think there may have been something about scribbling with crayons and writing on inappropriate surfaces, which my son also does, seemingly when less healthy.

i know i keep asking the same questions about ocd - it's just so darned confusing. i appreciate everyone's patience who keeps answering! my son,5, is doing 'okay' - generally a 5/6 on buster's scale, composed of a couple of small issues. he does continue to have random situations of cognitive inflexibility probably once/month or 6 weeks. tonight he had an issue with something he was supposed to do. he negotiatied to come out to do it in 3 minutes. when the time came, he resisted. then spiraled from there. finally, through much mostly explosive child techniques of repeating, he said he wanted to do 2 minutes because 2 is even and 3 is odd, although he initially agreed to 3. when i repeated and questioned this, he himself seemed confused as to why it mattered. then when fully calmed, he wanted to again negotiate the same way, came out with 3 and did it fine. when i asked him if he has troubles with numbers being odd or even, he said not usually, just tonight. i really don't think he has a 'web of thoughts', it's more something just doesn't sit right and then he can have issues. this falls into 'just right' ocd, yes? how do we work on that b/c it's impossible to know what and when will not just sit right in his mind? much later, i discussed with him if he again had trouble with odd or even, to tell me that that is the problem. although, i'm not sure he even knew when he initially resisted what was the problem - it's more a fight or flight immediate reaction. if it comes up again, and he does tell me, can i allow to change it once and then be aware for a pattern? or do i not at all allow an odd/even to rule behavior? thanks for your thoughts!

so - do you think, in addition or instead of (1), could it be another big infection such as lyme that is involved instead of and/or with of a genetic predisposition? buster - if i may ask your personal thoughts - do you believe it's a particular strain of strep or any strain can cause the reaction? so we have a perfect storm set of circumstances that really doesn't appear to be so rare!

pacificmama - curious for your thoughts. when my son had the bad reaction with azith, i knew of a herx but believed it to be flu or cold-like symptoms. do you know what is typical with neurological/behavioral symptoms of lyme or is it mainly described with physical symptoms?

kay - very interesting. do you have any thoughts on why that happened like that?

rowens - we did not do the cunningham test. i would love to have those numbers and to support the research but for us, it's a hit to our budget. the factor i used was 'what am i going to do with the results'. at the time and now, it wouldn't change how we are treating him. we may need it in the future if we change course. one of our drs told me early on that early in her career, she ran lots of tests and it was great to have all the info. however, now she only runs things that will determine how she treats. that being said, recently we went to a new dr on the referral of a current dr. he diagnosed my son with lyme and toxoplama gondii infection which we are now treating for. how would we have ever known otherwise? it is certainly a conundrum to know what to test for and when to stop.

i do certainly agree with what others are saying about being honest. . . i also think there is the chance to be too honest and get into answering things they are not really asking or thinking about. like this story... a boy ran into his house and asked him mom where he came from. the mom, knowing this was coming soon, sits down and goes into much explanation b/c he's of the right age to really know the facts. often during the talk, the kid has funny looks on his face. at the end, she asks if he has any questions. he says, "that's great, mom. but the new family down the street came from philadelphia, where did i come from?" my son, 5, is really not so interested. he is gluten-free, dairy-free and takes medicine and goes to many drs, so obviously he knows his body is acting a bit funny and we're working to get him healthier. other than that, he's really not interested. his main issue seems to be inappropriate reactions or behaviors that he doesn't see as troublesome. so i realize that makes a difference in discussing it also. my older son is 8 so he does have more interest and can handle more info but i do try to be aware of when he's tuning out and has gotten what he needs. i think like most of life's 'big talks' with kids, it's easier to have small often talks rather than 'the one big discussion'.

santi - we did had a terrible experience with azith. the fact that your son was on it recently without such trouble does make me question if it is actually the azith or other factors. my son was on it for original strep (which i believe may have never cleared) when he was 22 mths with no problems. 2.5 years later, pandas behaviors surfaced. he had high titers and + culture. ped put him on 5 days of azith. it was terrible. previous behaviors that had waned came back with a vengenance. once off, he went back to before azith. just previous to that, we had consulted a naturopath who was doing some gut work - possibly why behaviors had waned? he wasn't really showing gut trouble other than pandas symptoms and igg test for many foods. about a month later, new ped put him on 30 days keflex and nystatin b/c i said i was questioning if yeast was involved. he was 100% pre-pandas in about 3 days. i always credit the keflex. could the nystatin have also played a big role? our ped did nystatin b/c i asked about it, his normal protocol is just abx. however, he did share with me that abx rip up his stomach and he has a protocol he personally uses if he must do abx of rotating diflucan and nystatin. i don't really know the differences in abx - could it be that azith amplifies yeast trouble more than other abx?

oh faith - you make me laugh!