smartyjones

up until our recent school troubles, i had said ds7 was healthier than he'd been in 3 years since sudden onset. we finally found a needle in the haystack psychologist who gets it and has had great suggestions for anxiety that ds was showing very good progress with. recent stress has thrown him into an exacerbation that i do question if he's really been as healthy as i think all along . . .or if it is simply exacerbation or what -- not so much the subject of this post. at any rate, we basically have a muddled mess of separation anxiety and general anxiety (that has reasonable unresolved problems at the base if we are able to get to the base, which i usually am -- other people are not so much) and overreactions that may be one or all of : a) possible pandas symptoms ; a)- what may be learned behaviors and/or missed development b/c onset was age 4.5, he is now 7 = pretty key developmental time for coping skills and c) what may be personality issues regardless of illness. i am now trying to learn about neurofeedback as a treatment for anxiety. it would be something in addition to the work we do with psych with creative solutions, problem solving. i seem to remember some discussion in the past -- not really so positive. i am not seeking this as a real treatment for pandas generally -- but more so in treatment for 'pandas fallout' of helping to learn and/or relearn coping skills. thanks.

raven and dove -- have you checked out pandasnetwork.org. as stated, 'This illness covers several areas of medicine: Psychiatry, Neurology, Immunology, Pediatrics, Infectious Disease and Rheumatology' we do not see dr k, but i believe he is a pediatrician, not a neurologist -- some of his patients can chime in . interestingly, my dh and i were just talking today about a conversation i had here once with dr t that i was disappointed that when symptoms present, everyone thinks psych and no one goes the neurology route. dr t told me their certification board is actually the American Board of Psychiatry and Neurology. in our experience, the practical care is not so intertwined. someone more eloquent than me can explain, but it's that the brain function and the nervous system drive the behavior that is seen as symptoms. that function is impaired due to the autoimmunity -- so it's all a complicated web.

very interesting thread -- this topic is often discussed but i wonder if we could somehow pin this. do we have somewhere here or on pandasnetwork that discusses these experiences of jag, mom, tpotter, dcmom - and others? is there any published literature on psych meds with pandas? we discovered this was pandas early on -- only due to one savvy behavioral therapist. otherwise, i think we would have definitely been lost in other diagnoses and treatments. we've had recent trouble at school and from those with no proper ability to diagnose trying to slap on labels that aren't correct just b/c they don't know and understand pandas - or actually anxiety for that matter. certainly with underlying expectations that medication is the answer. good luck with your decisions, kiera.

raven and dove -- it doesn't appear you need another to chime in .... but that is what i am going to do. i agree April seems very far away. just our experience, when we realized it was pandas for ds7, about 3-4 months after 'sudden onset' he got on the right abx and saw 100% remission in about 3 days. he was on abx for 30 days, off for about 30 days and then began to backslide. he went back on abx, but not at the same treatment dose at first and not to the same great results. if i had to do it all over again. . . i would keep him on abx until we had a good handle on what was happening - or at least a good enough handle as we could get. i have one ds7 who has diagnosed pandas -- pretty classic presentation and severe enough to make people think, 'what is this". i also have ds9, who last year presented symptoms, had high titers but mild enough to be explained by many others theories from those not 'in the know'. he is doing well now - but i'm quite sure would have gotten worse with inappropriate explanations for what was causing the symptoms.

dan -- i have no answer to your question -- just that we have experienced similar. ds7 - at onset -- complained of intense eye pain for a few days -- dr suggested ocular migraines. he was 4 and it was nov/dec - so likely he did have runny/stuffy nose but i can't remember. in feb, after switching drs -- a sinus CT showed all 6 cavities infected. main symptoms were pandas onset. just this week, i took ds9 in b/c he's been doing throat clearing for a few weeks -- i was concerned could be tic. early this week, he complained of being stuffy at night, throat hurting in am, and stomach hurting. so - yes symptoms but i think he's been having trouble for a few weeks with throat clearing as main symptom. dr said had a ton of post-nasal drip and is treating for sinus infection. is your dd on abx?

FWIW -- we are working on a similar thought -- kind of a downgrading to where it may still be present in the body but not present the trouble that we see. pandas16 -- can you refer me to the article you mention about toxoplasma? thanks

we have used a homeopathic treatment for hhv-6. it has seemed to show good results -- although not with lab tests -- basicallly with clinical appearance of improvement. i'm still very interested in the propolis air treatment you are using -- ??

oh fcfexer -- you always seem to provide me with a good laugh!! thank you!!

granted -- i've had a margherita -- well, truth be told, 1 1/2 margheritas b/c ds accidentally knocked over my half-drunk first one -- but. . . . ds7 is pulling out of what i believe is stress-induced exacerbation due to horrible situation at school with 504 accomodations not being in place resulting in fight or flight and terrible guidance counselor who thinks ds is 'manipulative' escalating the situation but. . . i am sure without proper pandas diagnosis, he would be asperger label -- although has never properly fit even in exacerbation but where most symptoms seems, so likely asperger or PDD- nos. . . as he is pulling out of exacerbation, he has interesting insights into his thoughts and behaviors. . . i find this so sad that there is no one to report this to or to talk with him to gain insights into these minds and the thoughts on their own behaviors.

thanks so much for replies!! we went with 200mg, 3/x day, 6-7 hours. we did for 5 days. did see results in decrease in asperger-like behaviors, increase in attention and cooperation, and manners (interesting lack of manners and great difficulty in please and thank you during exacerbation) spoke to ped who agrees it's hard to determine dosage when using for this purpose. her thoughts for pain of broken limb -- at full dosage 3-4x day, she is comfortable with 7 days, 7-10 days is gray area, over 10, she is not comfortable with. she thought weaning after day 5 was good idea for us. i now want to move to 2x/day. was thinking it should be am and 8 hours later to have effects in wake time. would 10-12 hours be better to keep levels more steady? i want to do 2x/day for a few days and then move to 1x in am. thanks for thoughts!! if anyone wants to share what they do but worried about giving me advice on what to do -- i'd sure love to hear anecdotal motrin stories and plans!!!

peg -- i don't know if this will help -- ds7 just had a terrible stressful few days at school. he's not there now -- he wasn't so much affected at the time in a PTSD manner, although i was. a few days later, he was very wound up and getting a bit out of control. our pscyh discussed that for an anxious kid when all is out of control --esp adults -- he will certainly spin off. we started very deliberate, exact, clear delineation of rules, behaviors etc to rein him in. we also were seeing a bit of the asperger-like symptoms that ds has displayed in the past with onset and exacerbation. my theory is stress and breach of BBB. (i believe if we didn't know pandas, he'd have asperger label even though even in exacerbation, he doesn't fully fit). we started intense motrin -- yesterday was day 5 and now we are lowering. the past few days, i have noticed a bit of a spacey, trance like times -- not for terribly long nor terribly often. it's been rainy and many leaves falling from trees that are kind of hypnotizing to me too -- but i have noticed him staring off at times. i was wondering if it was an effect of the mortin -- either making him tired or contributing to this trance-like times. keep me posted if you discover anything from drs or have theories yourself.

kim -- i tried to send you a PM but you box is full.

what exactly is it that steroids do to curb an exacerbation? is it anti-inflammatory? is it like high-powered motrin? thanks.

are you familiar with Ross Greene who wrote The Explosive Child and Lost at School? he also has a website with a lot of info. google it to find it. it may provide you with some help. good luck.

ds had 'sudden onset' 3 years ago. of course, it's been up and down since then. last 6 mths have been very successful and i've said many times,he is now healthier than he's been in 3 years. we had success with motrin in the past. had really stopped prophylactically for big events last june --- didn't seem to really need/not so helpful. we've had extremely stressful school situation -- not really good accomodations in place from 504 resulting in extreme fight or flight reaction and subsequent school anxiety and arguments (his) with school personnel, with attitude that it's all about compliance and he just needs to comply or have heavy negative consequences. last weekend, he seemed to be spinning out of control. we were giving motrin 1x/day. psych discussed how for an anxious kid, big troublesome out of control situation sends him spinning. our dr believes he's healthy -- not spinning from new infecton. i have seen good results from motrin and from providing clear, direct boundaries and consequences. i do think there is involvement of permeability of BBB due to stress. i myself am in PTSD from this. he's on the cusp of of dosage at 48 lbs. i'd like to give less dosage, more often. anyone have any advice? i think 150 mg every 4 hours. we probably could do only 3x/day - 450 mg. even if we did a bedtime dosage, we're still not over 4x/day -600mg. if we go up to next level and do every 6 hours, we're at 200 mg x 3, also ~600 mg. what's more important -- mg or spaceage of time? thanks!

i don't really remember. i think it may have been something in a universtiy newsletter or something. i'm surprised i don't have it in my files.

i can't seem to find it. anyone know the one i mean? any links? thanks.

does anyone have links/articles/statements from professionals or in a study that likens PANDAS to rheumatic fever? thanks!

thanks. when i talk to people, i usually say there are about 6 docs in the country who know what's up. i guess i just found it so disheartening to actually hear her say about 10. i was just thinking if it was an actual quote i could use it to help the school understand where things stand with this. thanks.

T.mom -- i appreciate your experience and thoughts. i may have an impossible question but am curious of your thoughts. perhpas,l, if possible, in an objective way of general thougths on treatment and in personal retrospect way as if your dds had not had such an extreme exacerbation after being 'gone' -- or is it not even possible for you to imagine that? so, do you think that if one is certain it is pans, ivig or pex is a necessity, it's just a question of when (sort of my impression of dr's k's thinking -- we are not a patient of his, i think that through e-mail coorespondence and personal conversation at ocdf conference last year?) or do you think if one is holding well without ivig or pex, they can trust the seeming clinical state of health? or is it all back to the black hole conundrum we all live in of not enough research and long term follow up?

thanks norcal mom for the great info!! i checked out some of the slides from the link on pandasnetwork.org. do you know if there is any slide or any direct quote from Swedo about '10 good pandas docs"? So the slide is an basicall used to state that we are all in the chasm as far as pandas? thanks!

thanks much. peglem -- insights from a teacher's point of view are definitely interesting. nancy -- always so helpful to have your thoughts and experience. one thing i'm confused about is that i hear claims that schools don't want to do IEP because of the expense, but i thought if they had IEP, there was federal funding for it -- ?? are there negatives to having a IEP?

ds is actually doing quite well, is definitely healthier than at any point in the past 3 years. has severe separation anxiety with school; at first, was general anxiety with a new place, activiites; now i see, with much advice from dcmom, that it's actually severe anxiety with uncertainty and with difficult tasks and about his own reactions to things, his inability to properly communicate and problem solve. he's recently developed trouble with spelling tests. we did a 504 with lists an intense impairment in communication. in the past 3 weeks, NO accomodations had been enacted for communication-- although we had discussed use of special card, etc. classroom teacher changed some things with writing and idea generation that seemed successful. things were going quite well. Monday morning, he was agitated about the upcoming spelling test. worked through some great problem solving, although didn't have a good solution when we left for school. also, brother was out sick that day, causing anxiety. he got into class fairly okay. we have no 'point person' to tell of troubles. i've been meeting him for lunch on decreasing basis. at lunch, he didn't mention test. left me, went on to class -- remembered test and had extreme fight or flight reaction in the hallway. i expected trouble so i was in lobby, unbeknownst to him. school personnel very upset with this behavior -- running away, tearing a billboard. he couldn't make it back to class and sat with me in a room for rest of day. next day, -- out due to flumist in school. next day in school -- went for morning okay. agitated at lunch b/c we had discussed possibility of losing a home privilege when doesn't follow rules at school. he discussed he didnt' want to lose privileges. couldn't make it down to class. was calmer b/c i was there, but couldn't so much work through problem-solving b/c already agitated. at end of day, told me was concerned b/c has trouble with 'seatwork'. that night, discussed options,etc. he had some great ideas. next morning -- i have NO ONE to share this with. had e-mailed and received a bit of a terse reply from prinicpal that that much info in e-mail on 'day of need' is inappropriate. luckily, school psych available and i disuss that if he does not have appropriate outlet for communication inpairment concerning this task, there's going to be a problem. they institute a 'red card' to put on his desk if he needs extra help or there is trouble with the activitiy; and rating for if he thinks it's a good solution. worked beautifully!! the accomodation that SHOULD have been in place from the 504 and likely would have helped to avoid all this. i have other ideas from anxietybc.com and from our private psych, but no person to share with. . . but classroom teacher, who is interested and helpful, but also has 23 other kids. issue for me is that communication impairment is in 504 but in the past 3 weeks there's been no accomodation and school has no one that would be available as a point person for me to even give a heads up to except classroom teacher who is too busy. we had a problem with spelling 2 weeks ago that b/c i was in the school was handled well. school wants me out of there -- as do i -- but we don't have the right goal. it's like they think we are weaning him off of needing me to him being an independent average 2nd grader. he still has the 2 major impairments documented in the 504 that need to be addressed. classroom teacher has done some great work. we've done some great work in ERP like plans getting him used to school -- this week in the cafeteria -- but with me in the school -- i've expressed to school that it has switched from i am comfort of mom but i am now comfort of problem solver and communicator -- disabiities defined in the 504. there is no one in the role of this except the classroom teacher. but, obviously, because ds has communication impairment -- has trouble alerting her to potential problems. do ALL the accomodations of the 504 fall to the classroom teacher? should i think we need to go for an IEP? i have a pediatrician letter stating pandas and psych letter stating anxiety-NOS. thanks. luckily i have appt next week with educational advocate that works for ARC. odd serendipitous meeting a few weeks ago!

i do not have experience with imitrex -- however, i do have experience with severe migraines with aura. and let me tell you, if i were non-verbal, i'd be screamng and thrashing and bamming too! my understanding is that imitrex is usually used for migraines -- did the dr discuss why she chose that med? it may be interesting for you to research migraines, it may give you some clues into things that your daughter may experience in a neurological sense. there does seem to be connections with migraines -- i don't know if it's just that migraines are a neurological issue and we're in the realm of neurology so there's similar pathways and effects or if 'migraine' is simply another label that is assigned to a set of symptoms, or its commonly co-morbid. for me, the effects of the migraine are usually short term. however, i have had prodromal type with some level of symtpoms for days. i wonder if your daughter's neurology has her in some type of perpetual migraine-like situation? with various migraines, i've had extreme head pain; bizarre inappropriate concern about safety (during a blizzard and the news was urging people to have their outside vents cleared, during a migraine at this time, i was very worried); shimmery triangles in my field of vision; blocked vision like sun blindness; difficulting saying what i am thinking (the actual words); words not seeming correct -- like 'seahorse' to name a seahorse; extreme irritablity preceding a migraine; intense hunger preceding a migraine; numbness or heaviness in limbs; inability to properly move limbs due to numbness like foot falling asleep; intense tiredness. do you remember a year or so ago, there was a newcaster who had a sudden migraine on air and began speaking jibberish? i'm glad to hear you found something that may help and i hope it does continue to.

i seem to remember some discussion of possible ill effects of supplementing vitamin D ??? obviously, in select individuals, many studies etc for the general population. anyone have any such experience? i kind of/sort of remember a discussion a while ago. at the time, thinking ds7 was having more troubles when i was giving him that but it was long ago -- at least a year or two -- so could have been many things. 2 weeks ago, i attended a talk with a DAN and asked her thoughts about flu mist everywhere. she suggested vitamin D is good for everyone for staying healthy in flu season. i thought 'oh yeah' and began drops again with both boys. last thurs, likely a week-ish after hit or miss vitamin D, ds9 is doing a throat clearing/grunting thing that i think is a tic. no history of tics; he's been doing great for many months. this past weekend, i wondered about a vitamin D link. anyone have thoughts? thanks.