smartyjones

with the example of saving sammy when they tried to reduce the abx dose and he had symptoms . . . does anyone have knowledge/experience with this? how have those who have reached Beth Maloney done so - just saving sammy website? we are working with a homeopathic protocol that is similar in theory to long-term abx. we are about 3 weeks into tapering from the ramp up and moving to a maintenance rememdy. even though we're not doing traditional abx, i'd totally appreciate to hear opinions from those who are/have done on this. about 3 weeks ago while still on full dose, we saw some behaviors reminiscent of last fall first pandas episode - also dark eye circles, some finger flicking(never seen before - not too troublesome but noticeable). really troublesome behaviors only lasted about 1.5-2 days and weren't constant - i didn't know what to make of it - could be part of recovery or beginning of exacerbation. during this time, he also seemed to have improvement in rational reasoning capacities. after this short time, back to present self which is 93%ish prepandas self with maybe added rationality, finger flick remained. we had previously planned to begin taper at this time - b/c he was back to self, i did it - now not sure if i should have waited. a few days later - begin tapering - mostly same self with some shirt chewing and a slight mouth rash that has historically been very bad with pandas exacerbation, starting not wanting hair washed, finger flick when agitated. this past weekend - 2.5 weeks into taper - finger flicking gone, still chewing shirt, face rash clear, mostly cooperative. past 2 days - looks/acts tired, eyes circles dark, seems more needy/whiney, whines about brother at breakfast table before him, everyone must stop eating dinner until he's ready, "you're so mean", teacher said he had trouble choosing what to do today. i'm not sure what to think - is it expected adjustment b/c change in treatment? could it have been viral or other exacerbation a few weeks ago and still effects? was it too soon to taper and should go back to full dose? what about positive weekend? it's so hard not to panic and to try to think rationally about what to do. dr doesn't panic and thinks could be all part of treatment but doesn't know too much about pandas specifically - more RF. those on high dose abx, how are you planning to reduce? are you trying to get to 100% no symptoms before reducing? thanks! Kathy

i have a friends who's 3 children and herself are lyme positive. the oldest boy has symptoms - the other's didn't but she had them tested when he started having trouble. there is an organization - i think it's LIA - lyme in autism. there is a theory that some autism have roots in the mother have undiagnosed lyme during pregnancy. it's truly baffling that we don't generally rule out physical causes when something is wrong mentally!

my son totally does this. i read in an ocd book this summer, "there's either yes or no and neither will suffice". i remember on the today show, Sammy told a story about when he wrote 'help' - he worded it very interestingly, something like 'once when someone was working with me and i just wasn't able to accept their help' - it so hit me b/c it's so like my son - just not able to accept help. a few weeks ago we had an interesting situation. he was not in exacerbation at the time so that makes a difference too. he didn't come up for dinner after many calls/going to get him. he came upstairs and freaked out that we were all eating. i took him in the other room and after much yelling/crying i remember megsmom wrote something about piling pillows on top. i asked him if he'd like that and he said - no, i'd like to go lie in my bed. i went with him and he calmed down and in about 5 min was able to discuss that he was so sad we'd said grace without him. it's hard but i think so important to get them out of the groove they're stuck in when nothing works. sometimes we're able to go back when not in the heat of the moment and ask him what he'd like for us to do. then when it comes up again, i say 'remember when you said you'd like me to do X or you'd like to do X'. works sometimes, sometimes not. this is something i struggle with b/c it's so *** frustrating to be a part of and to try to extricate yourself from.

peglem - i know it's really difficult right now - but this could be a silver lining. i've been talking a lot with our insurance co(cigna) b/c it's open enrollment and i want to make the right decisions. in our current policy, nothing of latimer would be covered for us - however, they offered up to me that if i can't find appropriate treatment w/i 25 miles, i'd likely get the dr covered in network. it may be a good thing that drs are telling you she is the only one to help b/c then the insur may be more likely to cover her as innetwork b/c they can't offer you treatment in network. of course, it wouldn't be her entire bill but may make it more reasonable for you. i used to work in sales - i think the best approach is to be really nice, tell them your frustrated - you're just trying to get treatment for your child - and ask for them to tell you what you should do to get help from them. i usually find if i approach someone asking for help and advice they're more likely to help. I'd use their name and say something like, "XXX, i'm hoping you can help me b/c i'm extrememly frustrated. i'm trying to get treatment for my sick child and i seem to be reaching dead ends." think about it - they deal with people argueing and yelling at them all day - if you're nice and truly asking for advice, they'll notice. good luck!

my son also had bad nights and horrible mornings. at night, he was very wound-up obnoxious. mornings were as you all describe. i too, believe it is part of pandas. although my son is gluten-free, casein-free, i am not a huge food allergy (as in intolerance, not hives, wheezing) advocate. however, the big advocates peg difficult mornings as food allergy symptoms. i believe the strep to be the root cause of my son's troubles and believe we saw improvements based on abx not avoiding foods. i think his food issues are secondary to the strep but presently keep him off these foods as an added means to help his system heal without added assaults from unneccessary antibodies. an integrative dr in baltimore that i was referred to (i think from dr. k's office but not fully sure) has a great website with info - he sees many autistic patients. he has something about a gf/cf diet and says he has no science to back up it makes a different but has countless stories from parents who believe it makes a huge difference. i just mention it as something to consider b/c even small improvements may be helpful.

lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing. of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all? solely my opinion, if you see some improvements but slow - that could be that healing takes time. if you don't see anything, it may be time to ramp up abx or change treatments. my son started with symptoms Oct/Nov last year. we discovered strep Dec/Jan. he was on a 5day course of azith - all symptoms intensified with a vengenance. Feb he was on 35 day course keflex - within 3 days he was 100% back to normal. May - a few weeks off abx, relapse - again keflex - improvements but not totally. still not 100% but seems to be s-l-o-w-l-y inching near 95%.

yes, yes T. mom - such good advice! last winter/spring, my son was on 35 days of keflex that brought him back 100%. a few weeks off, he relapsed and again was on 30 days of keflex. i saw what i thought was only slight improvements but not near the 100%. only in the fall and while reviewing notes - which unfortunately, i seem to have a saw-tooth pattern myself in keeping - did i realize that he did actually show great improvement on that 2nd course of abx. separation anxiety and school phobia have been two of his biggest issues. the first abx, all behaviors resolved - back to pre-pandas self. the second, we were never able to get him back to school before it was out for summer. now, i realize this was a major reason i didn't think the abx were as effective. i was surprised when reading notes, how much improvement he actually made but just wasn't able to overcome school which i was giving all weight to. now i believe he had anxiety and phobia due to pandas which became anxiety/phobia habits that we couldn't break but the abx did actually do good work. and i only realize that due to notes.

i seem to remember someone mentioning they did a live blood test but was waiting for results. . . but now i can't find where i read that. did i dream it? what i may have seen was actually a reply by faith (? maybe) to someone else who had done that. does anyone know what i'm talking about? would you mind letting me know what came of that? very interested! thanks!

okay stupid question - but i'm wondering. . . when i explain pandas i liken it to rheumatic fever which of course, gets nods, shocked looks, understanding sighs. even though i know most people - including me a year ago - don't really know what that means just that they've heard it's some bad illness. why don't we all just have rheumatic fever diagnosis to make treatment, insurance, etc easier? is it b/c we're beholden to the doctors to give it? does it take hard core kidney and heart damage to get that diagnosis?

vickie - can you elaborate on what you mean about the separation anxiety and ocd tasks? thanks!

i think the under 2 no strep thing is ridiculous! my son has + rapid at 22 months. my older son - then 4 -had whitehead pimples on his face in the morning for 2 days. they dissipated some during the day. otherwise, no symptoms. they rapid tested and it was + for strep. they didn't want to test younger that same day b/c 'so unlikely he'd get strep.' the next morning, he threw up. + rapid. at the time, i thought he was allergic to penicillin, so they put him on zithromax 5 days. now i'm not sure if this was the initial strep incident. a year later, he was having severe potty phobia when we potty trained. the dr rapid and cultured him b/c she thought his throat looked like strep. they were both neg. now i think it's definitly related and maybe he never really kicked that initial strep infection at 22 months but hallmark pandas symptoms didn't surface for 2.5 years later with another infection. did you tell the dr he's been exposed to someone with positive strep? i think the only reason they tested my son was b/c his brother was there the day before. what is that theory anyway? is it that the immune system is too immature to mount a defense so there isn't a concern about RF or SC so they don't worry that they have strep if under 2? could it be that pandas is a result of an early strep infection and that's what gets the ball rolling?

so sorry you are here but you will find much info, support and help here. when i first read these posts, i found it difficult and depressing b/c i just didn't want to be on this road. however, there is so much info and help, practical and emotional, you can get from these other parents it's invaluable! i would add to check our webpediatrics.com information on pandas. ~Kathy

i am trying to understand the definition of a tic. i had believed my son did not have any tics with his two pandas episodes. during one, i saw eye blinking one time for about 5 seconds. this was all he did close to a general layperson defintion of a tic. one of his obnoxious behaviors was kicking the back of my seat in the car. i've read kicking can be a tic. as i've learned more about tics, i realize he did for a short time, do a finger thing that he touched each finger to his thumb repeatedly. in the past two weeks, he has been occasionally flicking his finger - first finger flick against his thumb - sometimes to the air, sometimes to an object, sometimes to his face. i read in kurlan's handbook of tourettes syndrome and related tic and behavioral disorders - a complex motor tic is an abrupt, distinct, coordinated pattern of sequential movements. it may appear purposeful, as if performing a volutary motor act but it serves no purpose, save the relief of an unpleasant sensation. it lists - touching nose, touching other people, smelling objects, spitting, neck-cracking, rubbing, jumping. one of his strangest behaviors was touching strangers. how do you discern what is a tic versus what may be strange but normal 5 year-old behavior? and then what is obnoxious pandas behavior versus tic pandas behavior? or does it matter to differenciate? do we need to get into if this is just a motor action versus a compulsion related to obsessive thoughts? can i rest on the criteria that this is something i notice but it doesn't impact or alter functioning? thanks!

erica240 - i'd ask you to think about how much you like and are confident in that dr's office. i don't know why they would do the ASO if you have confirmed strep - sounds like a perfunctory, CYA move to me - but even that doesn't make sense. i believe it to be the first step in discovering if there's been a undetected strep infection. my son had no typical strep symptoms so for him it was helpful is seeing that he had indeed had strep recently. i know some have trouble with titers but for us it was helpful. 2 of our labs rate ASO over 150 as raised and one is over 200. our initial test was only ASO. subsequent ones have included anti-dnase-b also. i think if you do blood strep titers again, you should do both. also - you should get a copy of that lab work. a behavioral therapist suggested pandas to me and told us to have ASO checked. he'd had no signs of strep. when it came back as 898, ped did a throat culture that was positive. this was all early in my knowledge of pandas and i was shocked to have evidence of + strep. we'd been in the ped office at least 3 times that fall - ear ache, behavior, mouth rash - they were just looking at me, shrugging their shoulders and ushering me out as crazy mom. i now believe they did the culture as CYA b/c he'd been in that office so often and then had high titers. they then threw him on a perfunctory 5 day course of azith saying they were concerned he could get chorea. i knew from my research that he'd most likely had strep for at least a few weeks(i believe much longer) and that the short course of abx would likely not protect him from RF or SC b/c we were already over that window. i left that office when we went back for the follow-up - which was silly in the first place b/c he'd had no signs of strep so i don't know what they were planning to look at to follow up - they said we didn't need to worry - yes the strep was gone (b/c of 5 days of azith) and "you'll find the strep and the behaviors are not related." i was mad at myself for a long time b/c there had been many signs even before that fall that i needed to find a new ped. i just wasn't sure where to go and that somewhere else would be better. we did find a ped that is much, much better. he's still not sure what to do about pandas but he gives me credit for having a clue and agrees somethings not right.

I myself on and off have floaters. I also have migraine headaches with aura - zig zag lines/sun spots/other neurologic distrubances. I recently perused a book in the library called "The Migraine Brain". It looked interesting but I haven't had a migraine in 6 months and it was right next to Against Medical Advice so I had to go with pandas obsession and choose AMA. (Side note - I definitely think that kid had undiagnosed pandas.) It discussed how the migraine brain is different than the normal brain (whatever that is) in a neurological sense. Perhaps there is a subset "PANDAS brain" - ? Or the pandas brain is similar to the migraine brain. We are not Dr. L patients but hasn't her primary focus been headaches? Maybe that's why she gets pandas when others don't? About 6 months prior to pandas behaviors, for about a week my son would complain of intermittent eye pain that would come on suddenly. The dr didn't find anything wrong and suggested to investigate occular migraines if it continued. A few days after that dr visit, he didn't complain anymore. I find this interesting b/c I believe I have a nephew who has undiagnosed pandas in addition to my 5 yo pandas son. I believe it's all got to be related.

[ Atrocious behavior, constant anger, vocalizations, silly noises, facial stuff, going from silly to angry and back whenever his brain is idle I feel quite sure you've followed this path if you're with Dr. Bock, but thought I'd add it just in case not. . . my son's presenting symptoms were mostly commonly described yeast symptoms. some of what you describe could be yeast related. Without technical facts, I feel there's a big relationship with the strep and yeast - not due to antibiotic use - my son hadn't been on abx for 2.5 years when symptoms presented. there was a study on here recently that mentioned an enzyme in the gut that is instrumental in digesting gluten and casein that binds with the strep if strep is present. I definintely feel there is something going on with the strep in the gut inflamming yeast. My son has made some really good improvements, but I see some of the yeast-type behaviors returning in the past week or so - like shirt chewing. I was recently reading some old info from Jacquelyn McCandeless on this forum and she recommended AquaFlora. We are not going to use that b/c we are with a ND who wants to try a similar product that isn't as strong. i know it is so frustrating to feel you're grasping at straws for something to work and i apologize for throwing another one in the mix, but just thought it might be something to consider. . . Kathy

wow - the devil that you know vs. the devil that you don't - such a struggle, my heart breaks for him. have you checked out anxietybc.com? my son is quite a bit younger but i have found the info there very good - more helpful than most of the professionals we have seen. they have also been very responsive when i asked specific questions. they have a parenting section - i've worked with the section for younger kids but i believe they have info for working with older kids too. good luck!

not sure how to help but to say - have you fullly investigated the abx allergy? i was told by drs office that we needed to avoid penicillins. when i got his past records b/c of pandas, i see his first rash reaction was at 17 months to omnicef(which is a cefalosporin) and he was switched to augmentin. 6 months later, i forgot this allergy (i know - bad mom) - he was put on amoxicillin and got hives on his face and then switched to zithromax. last Jan, at 4.5 was put on 5 days of azithromycin b/c postive throat culture after high titers. this was horrible - exacerbation of all pandas behaviors. a month later(and different ped) was put on 30 days of keflex - 100% pre-pandas. i believe they chose azith and keflex b/c i said he's had a reaction to penicillins. now - it's safe to say he's had rash reactions to some abx but it is not what initial ped office told me to be wary of. i would say, if you haven't, get copies of drs and pharm records to be sure you know what exact abx the reactions have been. maybe you're more aware than me, but i was very surprised when, 3 years later, i saw the initial reaction was to omnicef.

with the talk of the BBB opening or closing - is all that's going on with a strep invasion and resulting faulty antibodies what opens it or do we need to consider there's something else faulty in the body that allows it to open? thanks.

my son's symptoms first appeared just about a year ago at age 4, 4 mths. i feel i do have a fairly good handle on what has been pandas-related and what is his personality (of course, still hard to judge b/c this young is such development age). first issue of knowing when it's gone - end of summer, into sept, we rated him at 90% pre-pandas. now i believe i see that inch closer to 93-95%. i rate this according to: tempered response to an upset rather than an over-the-top fight or flight freak-out ability to calm down in a reasonable time - 5 min or under versus 15, 20, 30-minutes of not being able to let it go capacity to reason and see cause and effect ability to stick to agreed up limits - shutting of the tv after one show; if he continues doing something he's not supposed to or hasn't done what he's supposed to, with a reminder, he says, 'oh yeah, right' and does it rather than an argument capacity to find a solution or work with someone else helping find a solution or at least entertain there is a solution this last one is huge for him. a few weeks ago, he wanted an umbrella to go out in the rain to protect his book. I said i couldn't find b/c we were late and just a quick run to the car. he then just made a thoughtful face and put the book under his coat. last week, i forgot it was his snack day at school. huge b/c he's gluten, egg and dairy-free so his day is the only one he gets to eat what every one else does. we had discussed making his pumpkin muffins in these cute jack-o-latern molds we have. i remembered 5 min before leaving. he was sad and said he wanted us to bring no snack but he moved right along with getting ready, getting to the car. i told the teacher not to mention anything to him. he ate the chips and salsa i did bring. in the car on the way home, he said he'd like to make the muffins today at home b/c he didn't get to bring them. we happily made muffins. issue over. I believe these are strides he's made from a medical basis of treating pandas, not from behavioral help. That said, i think behavior help is very important. i am quite jaded of the psychological profession and disgusted at the lack of help/incompetence we've encountered. someone posted on here recently they walked out of an office in the first few minutes - i think you've got to be willing to do that if you feel it's just not jiving. we wasted all summer with a loser psych who was touted as the answer for us. after the first visit, my husband and i just looked at each other and said, "he just doesn't get it." we just didn't know where else to turn - he was supposed to be the 'one'. i have found help from anxietybc.com with behavior suggestions. they have a really good parenting section. i also post on here ad nauseum about the explosive child by ross greene. he says you have to treat behavior issues like any other delay. even up until the last few weeks and these changes - while 'out of exacerbation' he seemed to have the frustration mgmt and problem solving skills of a 3 year old, not a 5 year old. i think it's helpful to treat them as such rather than expecting them to be age-appropriate in that area. just as you wouldn't expect a kid with a reading delay to read at age level. so yes, i would suggest treating him in those life mgmt skills as a 20 month old if that is what he displays. we have now found a helpful psych. she doesn't do CBT if we need that in the future, but her insights are helpful. my son does a potty delay thing and argues when i tell him to go. if we don't prompt him, he won't go - i mean 12 hrs won't go - then i have an kid with a full bladder being obnoxious. we were making it worse by tying the behavior to the potty. she suggested ignoring the potty and dealing with the behavior just as we would if we thought it wasn't related to the potty. i was 2 steps ahead and needed to be only 1. now it seems so simple but i couldn't see it. it's only been about a week but seems to be working. so i think the outside objective viewpoint can be very helpful. it just seems to take a lot to make sure that viewpoint is also in line with your lifestyle and your parenting beliefs.

erica240 - i think you just answered your own question! I'd say you're saying you should go for it! esp if they're closing soon - that's a fairly long time to wait and regret. let me know how it turns out. can you say how long you feel he's been out of exacerbation? or is it not so much 'out of exacerbation' as a good couple of days?

yes - a very hard choice! i found out about the test somewhere around Aug. my son was doing quite well and we were gearing up for going back to school - that he was unable to go to the last 5 weeks last year. i thought i was better off spending my $ on our treatment. i have thought i would do it if he has another exacerbation. thank god - he has continue to improve! i didn't order the kit b/c i discussed the $ aspect with Kathy and decided to not have them send it out if i wasn't intending to send it back now. i think i now regret that - is the bigger expense the sending back? it's probably good to have it on hand. but - it would be very interesting to have seen those numbers. one good piece of advice i've gotten - when we saw our first naturopath, i was surprised she wasn't running more tests. she said early in her career, she ran all kinds of tests - the data is certainly interesting and it would be great to have all kinds of info on everyone. however now, she only runs tests that are going to impact how she is going to treat the person. good luck, Kathy

what is it about the kefir that you think is helpful? does it seal off the leaky gut? does it propogate healthy bacteria better than probiotics? do you not know but just seem to see a difference? how do you handle dosing? is it an all or nothing thing or is it still helpful to have just a little? i got the new coconut kefir by So Delicious - my son liked it b/c i said it was a new milkshake he's not allergic to but he's at best only going to drink about 4 oz/day. it's has a good taste but is a little sour. i can't imagine him drinking anything that is more sour. pmoreno - if you're reading - you told me once what you thought about that product and now i can't find it - can you tell me again - sorry!

Thanks PANDAS_Denmark - i found this quite interesting b/c it addresses my theory that for my son his food intolerances are/may be caused by strep in the gut. most of the behaviors he presented with were yeast-like. he tested with high titers and positive culture but no other typical strep symptoms. i definetly feel the two are related. perhaps i liked the article b/c i am reading it through 'my glasses'. aside from the autism, the child in the article's behavior is similar to my child. i agree it seems to be written from a naturopathic perspective and thus anti-abx. our first naturopathic dr wanted to justify him as a strep carrier and work to heal his gut. i wasn't comfortable not addressing the strep and trying to allow his system to take care of it. our current naturopath says this is common in the naturopathic world (focusing primarily on gut health) and thinks you need to attack both issues. does anyone know if this statement is a naturopathic view or commonly accepted in the modern medicine world? "microbial cross-talk with the cellular components of the gut-associated lymphoid tissue is now recognized to be the major determinant of the immune system function. (Macpherson & Harris, 2004) Thanks!

for those of you who have experienced the phenomena of 'turning back the pages' - how did you determine that this was part of the healing process and not the beginning of an exacerbation? i think i'm asking from a objective perspective and from a 'keep from totally freaking out' objective. thanks, Kathy