smartyjones

sorry harpazo - i'm not exactly sure what you mean by 'this behavior'. we've talked about 'flipping the switch' with my son. there certainly have been times when that's what it's been like - flipping a switch on and off the behavior exactly like turning a light on or off. he's doing fairly well and just yesterday at his t-ball game, he was happily running and fooling around in the dugout (which i hate) but totally interacting and enjoying the other kids and the game. i said to my mom - it could just as easily be turning that switch to last year's soccer when he refused to play and sat in my lap with 'there's a reason but i don't want to tell you' and was withdrawn and didn't speak to anyone. that's just an example b/c i said it yesterday. he also would be wild with tantrum and irrational and then have the cutest, sweetest smile and hug that melts your heart ready to happily read a book or play a game.

tapiash - i read your post earlier today and then was reading cure unknown about lyme. i just thought i'd pass on this passage to you. . . "by the fall, having just started seventh grade, Amy's health plummeted dramatically. Like Seth, she developed dysautonomia (a disfunction of the autonomic nervous system), but also a temor, balance and gait problems, and what appeared to be Raynaud's syndrome, in which the tiny blood vessels in the fingers and toes constrict in response to cold and the lips turn blue." it's just in the beginning of the book, but i assume the child they're talking about has lyme. not sure what it's about but i thought it was interesting i don't know about raynauds and then saw it twice in about 6 hours. good luck.

aspartame and splenda may also be in abx!! when my son was first presenting symptoms, we went to a naturopath who did a food igg test on him. he was highly reactive to over 15 foods - all dairy, most grains. we immediately took him off those foods. that was about 15 months ago. unfortunately, we also started a month of keflex at close to the same time. he had a return to 100% prepandas in about 3 days of the keflex. i've always credited the keflex, not the diet changes. we also consulted two traditional allergists. they put no weight in that type of test. yes, they agree his immune system is producing antibodies against those foods but "so what" - direct quote - it's not creating any symptoms. really? common sense dictates to me that if i'm concerned his immune system is acting screwy, i don't want to further engage it. after he was off those foods, i realized he'd been limiting milk. a week or so into it, he said, "i don't want to eat anything i'm allergic to." on some level, i think at age 4, he realized something was going on. that said, i don't believe the diet changes have made any significant differences for him in his behavior. he's had good times with this restricted eating and exacerbations. he does have a 'healthy' friend at school whose mother just told me she cut out food dyes b/c she thought her daughter was overly sensitive and emotional and she has seen a positive result. there's an MD in baltimore that has a great quote on his website - something like he can't cite any scientific evidence that gluten and casein can cause behavioral problems but has hundreds of parents who swear there is a difference from their children not eating them. i keep him on this diet b/c i believe his immune system is not reacting properly and am trying to not further engage autoimmune reactions- not b/c i see any measurable difference in behavior due to the food restrictions. someone posted an article on this forum that proposed an idea that an enzyme necessary for the digestion of gluten and dairy also binds with strep in the gut. i think it could certainly be a possibility. i don't buy high fructose corn syrup and hydrogenated oils but I don't restrict them from eating them at other's houses, sports snacks etc.

norcalmom - please keep us posted on the results of your assessment - i'd be very interested to know!! our psych has suggested something similar but told us to wait until he's solidly in his 6th year and the middle of first grade to get the best assessment. hilarious about the ca-ca chromatic -- sounds so much like my son - when in a phase, turns so much into poop related -- it is annoying but also fascinating. there is something different about it that is not just 'normal' boy talk. incredibly interesting concept of what came first. lately, i tend to think the former - that there's something going on in their brains - inflammation, 'inappropriate' synapse, enzyme reaction - the same that causes the problems, also creates the giftendess. my son has always had exceptiona spatial/visual discrimination - working on puzzles/patterns far beyond his age, immediately seeing patterns. he always seemed to have that, not that it came out when his pandas symptoms surfaced. when he was in crisis, it was so intense, i don't seem to remember him doing much that was exceptional. i know he had strep at 22 months and believe he never kicked that infection. were the exceptional qualities the other side of the sword that surfaced at 4.5 years old? i feel medically he's doing 'okay'. not in crisis, not totally healthy. i do feel while still bright, he's doesn't seem to have that same ability that would make people's (not just us as his parents) jaws drop when they saw his mind work. did he simply arrive at a mental developmental stage earlier than his age and now it has balanced out? is his brain now quieting and healing and functioning more 'normally'? so fascinating but i guess we'll never know for sure.

sorry to say mom - my son's been dairy-free for about 15 months and we don't really do cheese. i think he knew he was having trouble with dairy b/c once we got the test results back, i realized i had been putting his milk glass back in the refrigerator and then dumping it. go figure - not so smart of a mom, huh? i myself am a bit leery of soy - i used to eat a bit of it but then was having thyroid trouble and do have to say i have some belief in the 'dark side of soy'. so we really didn't try many soy analogs but rather chose to forgo cheese. he does like the ian's frozen pizza that has soy cheese. i used to work at a heathly food store that had tastings and i think all the cheese subs all quite bad tasting. (although that was when i ate the 'real' thing so perspectives change). so delicious is expanding their line of coconut milk products and i think they're quite good although expensive. my son likes the yogurt. i like the kefir but can't get him to have more than a sip. we also make a bread spread from coconut oil, honey and cinnamon that is really good. so we don't really do cheese subs but rather are cheese-less. i do have to say i miss parmesan on dinner meals!

interesting! especially about the vitilago. does anyone have info about the opposite - excess pigmentation spots like age spots? i've recently noticed a couple on my son's neck near his ear and one just inside his hairline. i keep checking them. . . then i think they're fading. . . then i think they're not. i myself seem to have an increase in age spots that my dr just kind of shrugged off but i think it must mean something.

first, dcmom - i actually think you SHOULD pat yourself on the back. i find in your posts you are an EXTREMELY patient mom. it's one of the things i think about - 'i should be more patient like dcmom' b/c i am not very patient in general and especially when annoying behaviors start. i know from your posts you are extremely dedicated to your girls and to getting them well. the fact that you're asking for advice on how to proceed now is testimony to that. so, take a moment to feel pride in your attitude, preserverance and love for your girls! second, you won't go back to your old life, so much has changed. you're now enjoying holland and holland is beautiful, right? this is not a path any of us would have ever chosen but it's one we've been placed on. i really do believe that there are reasons and outcomes, that perhaps will never be known to you, of how you're experiences will somehow touch other's lives for the better.

mom - remind me -- you had pandas as a child, see much controlled with fish oil, high epa? you didn't believe your children's symptoms were "that bad"? is that correct?

i think that it is that there are some type of symptoms of sinus trouble but as with so much with pandas, they are not 'typical' symptoms. here's what i mean: my son had a strange eye ache that would come on suddenly for a few days with no other symptoms in spring of '08. no other cold/sinus symptoms. the ped found nothing and suggested could be occular migraines. suggested that if it persisted for a few more days, see opthamologist. it went away. at this time, i myself had a sinus infection. fast forward approx 6 mths to fall '08 - ds begins with pandas behaviors. has high titers and + culture. in feb '09, we switched peds. new ped believes based on symptoms, very high titers and exam - redness and bothered nostrils, not necessarily indicating 'infection' - to further investigate sinus infection with CT. CT shows all 6 sinus cavities infected. he didn't have abnormal symptoms other than what you'd think 'normal' for a 4.5 year old through the winter. i think here the ped was a bit 'fishing with a yacht' -- for him, it was an experienced hunch that paid off with an infection. i guess what you're saying, faith, is that there was 'something' that made the ped think sinus infection? is that your question - why look for a sinus infection without any inkling of 'something'? based on titers and CT, ped thinks he may have had infection for quite some time - possibly back 6 mths to eye ache issue. also thought he could be experiencing headaches but maybe not expressing it or maybe not knowing what it was if it was low-level chronic (because of young age). ds denied any headaches. his issue at this time was behavior. he'd have runny noses but he was 4 1/2, so not out of the ordinary; no compaints of sinus pressure/headaches/any other difficulty. i'm not sure where the answers lie - do we need to be doing full batteries of tests on everyone - like dr. t said 'fishing with a yacht'. but where do we draw the line of picking up what is the trouble with a particular kid?

totally - my son does this too - he usually has something close enough to the word so i can know what's he saying. it's so odd to me that there are so many behaviors that are similar between kids!

remember the john travolta movie that he sudden has outrageous intellect and motivation. then they discover he has a tumor that is causing differences in his brain. i've wondered about this b/c isn't it such a small, small percentage of our brains that we actually use? i don't know that i've seen anyone report a 'back to normal' from giftedness when they're kids are healthier.

i think you should try to enjoy him while still analyzing - but not over analyzing. it's so hard when they're young to decipher what's pandas inappropriate and what's simply young child appropriate. before my son went to school, at age 2.5-3.5 or so, he did this speaking in rhymes thing. i can't fully remember it. we thought it was amusing, certainly didn't hurt anything and i think thought it was a example of how bright he was that he could rhyme on his own at such a young age. now, i believe it was a low-level pandas symptoms. he didn't have debilitating symptoms for another 1.5-2 years. i think he had other tell-tale signs that can only be recoginzed in retrospect. they were really not troublesome but it's only in looking back that i see. . . i think as long as you know he's pandas and you are seeking help, you're covered. this is only me, and i tend to be an overanalyzer and paranoid so very possible over the top - i may wonder if he's really over the infection if he's still got that behavior lingering, esp if he's lost it before on abx. however, so many people attest that their kids had lingering symptoms that then went away to just possibly time for healing. beer at ccd - hilarious!

my son is switching from private to public next year and we have been working with the Childfind office. they've evaluated for an IEP but at this time, he doesn't test in their special needs realm - so a legal plan is a bit more nebulous. of course, they haven't seen him day-to-day in the classroom. they are not at this time writing a 504. i can't remember what they called it and have much info packed away as we've had painters and carpet done in the past few days so can't find it. it's something like an 'intervention plan'. it is something written from the childfind office and will use much help from the school guidance counselor, but doesn't carry the legal weight of a 504. it's the first step to see if we can all work together. i'm not sure of the exact players for next year so it will depend on how cooperative, understanding and helpful everyone is but at this time, i am hopeful that it will be helpful. there are items similar to what kimballot wrote and an overriding notice that what may at first seem defiance is really something deeper and he will need understanding and accomodations. i had read, i think in one of tamar chansky's books, of an idea of a colored card to hand the teacher if he has to go to the bathroom or needs other help rather than having to raise his hand. he doesn't like to single himself out in a group so we'll see how that goes to notify a teacher that he needs help.

pixies daddy - i'm not trying to suggest this is also your situation, just telling you ours. i believed my son to be clear-cut strep induced pandas -- pretty classic behaviors - ODD, intense upset, inattentive behaviors (no tics), high titers, positive culture, 100% remittance with first abx - ~ march '09. after some time off the abx, he relapsed. he has continued basically in a state of non-crisis but not necessarily healthy with about a 8 week exacerbation with the flu in nov. i now believe he is more accurately pitands, with many infections at the root of the trouble. we had a western blot last june that was totally non-reactive. he has no lyme symptoms that are not also cross-over pandas symptoms. we recently have gone to a new dr (referral from our current dr b/c i suggested investigating lyme again or to see why he didn't appear to be getting healthy). the new dr believes him to have lyme, toxoplasma gondii and cytomegalovirus. we're 4 weeks into treatment for these issues. he had a ramp up about day 7 - which could be due to the new meds. he's back to his general baseline with probable less inappropriate upsets - he has an upset within 'normal' reaction and is getting over it rather quickly - less than 5 min. is this due to the treatment? it does seem to have occurred in the past few weeks, but i don't know. i did discuss this testing issue with dr. t and he said that although you can always do more testing, it may show nothing helpful and can be expensive. - which i do see makes sense. had we not seen this particular dr, we most likely wouldn't have tested for those issues. leaves us in quite a quandry! most lyme experts believe lyme makes it very hard for the body to kick other infections such as strep. have you considered there may be other infection(s) that are resulting in this trouble with strep? good luck.

i've shared the end of the article b/c i found it inspiring - it's about the guy who was recently on american idol At a recent public appearance, Koterba met a mother and her young daughter with Tourette's. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. "No," Koterba told the girl. "You're going to have a great life. An amazing life. A creative, beautiful, wonderful life."

i don't really know much about this - it's just been suggested to us for the future(when ds is more into 6th year and 1st grade) by our psych whom i do think is helpful. i do overwhelmingly think the physical health is the real issue - but then there is trying to discover ways to help with day-to-day functioning. have you had neuropsychological testing? can your school get off the 'behavioral' aspect and dig deeper? there have been some past posts on here - unfortunately, i don't think they indicated it was so helpful. it's something i'll be looking into in the next 6-12 months. my son has had a few incidents in the classroom that on first surface appear to be defiance but with some other factors, the psych does believe there are indicators that he's having trouble processing information. she's interested in finding out what is happening with his processing b/c she likens it to repeatedly having a child with a hearing disability take an auditory test - it just doesn't work, no matter how hard you try or wish the child would 'just cooperate'. a friend had this testing for her child last year and discovered that she was 'normal' in two types of processing and extremely high in another. this is seen as a disability b/c it's hard to integrate it all together. it's plausible to me that my son may be having trouble with this b/c he always (since age 2 or 3) had an amazing 'puzzle mind'. i think that if all of us have processing skills that add up to 100% and someone has one outrageously high, it probably stands to reason they'd be low in others. i do feel for you that the principal has such an unfortunate attitude!

just wanted to weight in on CST. . . my son had been having CST for about 6 months -- we are recently taking a break b/c we went to another dr (at the referral of our CST therapist - incidentally trained by Upledger Institute) b/c i wasn't feeling ds seemed to be on enough of a healing path and thought we should again investigate lyme. the other dr has found some other infectious agents, including lyme, that are troubling. while we've taken a break from CST b/c there's only so much $ to go around - i think i found it helpful but don't have direct examples. our dr was fabulous - he was initially trained as a PT, later as a ND and in CST. he's very knowledgable and helpful. very low ego and really has main interest in helping his patients get well. (i know all practioners should have this as primary objective, but seems more in some and less in others). from the little i know, when i recommend it to people, i do mention that i'd feel most comfortable with someone trained by Upledger. i don't know what direct results from CST -- there was one day after a treatment that when i picked up my son from school, as i looked at him from a distance in the line, i had this strange sense that his general being around his face and eyes seemed clear. it didn't seem blocked to me before but just that day seemed clear. i'm not sure what that was about but think it does seem to have significance. i'm planning in the future to have him do more CST. my older son had a strange situation as a baby where he occasionally had a bulging fontanel - we had CT scan, neurologist and neurosurgeon eval found nothing, no other problems. it's something that still bothers me. i plan to have him have CST also.

mom - very wise things to consider when doing testing and especially b/c it is quite a bit of money. i agree the testing issue is puzzling. not really in answer to your question but along the lines of testing. . . last year, when everything started with my son, we were seeking help from many different avenues. one of the dr's we consulted was a naturopath. she was very good and i liked her but we don't see her anymore, mainly b/c we differed in our thinking of what the "root cause" of the trouble was. she was thinking he had food allergy/intolerances (possibly celiac) that was throwing everything off (including his ability to fight the strep appropriately) and i was thinking the infections were the cause throwing everything else off. however, one thing i will always remember was what she told me when we first went about testing. she said early in her career, she tested a lot. now, it would be great to have such results and information for interest/research purposes but if it wasn't going to influence how she was going to treat, she didn't do it. that's the premise i've used in deciding not to do cunningham. i absolutely agree her work is important and helpful to most, but it wasn't going to change how we personally are treating at this time. i do think it's too bad my son is not included in her research numbers and i would have loved to see what his numbers were/are. however, i chose to spend our $ elsewhere. that's not to say we wouldn't do it in the future if we need to if it would influence how we are treating him. there was a post recently where i asked dr. t basically, where does it end - if i thought my son had clear strep issues, do i need to follow up on myco? his answer was that while you can always do more testing, it may not show helpful info and it can be extremely expensive. that said, i believed my son had clear strep issues, which he did, but we've gone to a new dr who saw him test positive for lyme and toxoplasma gondii. he'd had a non-reactive western blot and no one previously tested of toxoplasma.(there's been recent studies implicating it in mental illness). so - i think you're very wise in evaluating what you'd do with those results. keep me posted on what you decide.

michelle - i am usually on the pandas board but saw your post in the recent line. do you have any experience or interest with homeopathic medicine? my son has pandas and in exacerbation will display some similar behaviors. he's only 5, so more minor than what you describe b/c he just doesn't know but along the same lines. as i'm writing this i remember my husband carrying him out of a shoe store at age 4.5 with new, unpaid shoes on b/c he kept yelling "butt, butt, poop" repeatedly and would not stop. for him, there is an infection triggered issue. i'm not sure where it falls btwn strep, yeast or whatever else. when i found the remedy hyoscyamus, i was stunned - the description was like i had written out his troublesome behaviors. i do believe it has helped. pm me if you want any more info.

interesting marigold! i am usually over on the pandas board. with my older son, i had group b strep, abx and a horrible thrush issue - he didn't have trouble/ i had horrible trouble. i finally took diflucan -- it was that or stop nursing. with my younger - now pandas - i was not group b +, had no abx but started again with thrush with nursing. i took diflucan. i have wondered if there was some connection with his now trouble with pandas.

airial - up until about a month ago, i'd say i had an extremely similar position to you. i don't know if you read a post i had but i had a negative situation with this. i believe all involved didn't have bad intentions and it's okay now, but was just regretable. we had a horrible school conference and weren't sure if we should have my son continue for the year. this presented a conundrum b/c he had school phobia last year and seems to be enjoying school this year. i wanted to get some the most info i could and sent an e-mail to select parents in the class - both my friends and a few others who are aware of my son's situation probably b/c they've witnessed something and i explained - all people i trusted as part of my 'inner circle' to help my son. i asked what they may have witnessed themselves when in the class and what they may have heard from their children. it was helpful b/c overwhelmingly the info was similar to what we believe about him -- he does fairly well with other kids, the other kids like him and don't seem to notice oddities, he's sometimes overly silly, he's often withdrawn in certain situations (lunch, group activities), he is not one that the parents hear of often as troublesome (and there are a few of those). i think the bottom line is that yes, he can be challenging and i think the teacher is just tired of it. other parents expressed where they've had somewhat similar feedback from the teacher about their "healthy, normal kids" . we don't now feel it's an unhealthy situation for the next few months. anyway -- one of those people i included mentioned something to the teacher. she then solicited a few other parents to get a copy of my e-mail. someone did forward it to her. i'm not sure of the details of how/who all this happened. i was so very upset about this b/c i saw it as such a breech of trust. obvioulsy, if she didn't get it in the first place, i didn't send it to her and she should have asked me and the other person should have asked me as well. ultimately, it was me who included too many or the wrong people in this. i'm pretty much over it now and seeing that there's only a few more months of the school year. but - lesson learned! i need to be careful with whom and what i say about my son!

hi may. i'm sorry - i'm not one to be able to answer if you should stop or what you should do. i know when my son was at his worst, and can be if in exacerbation, he is very unwilling to do things he is completely capable of. what seemed to work for us was if i split the duties with him. "you put on your underwear and i'll help you with your pants" - "are you going to be the taker-offer or the putter-oner". "you put on your pants and i'll help with your shirt". those are all getting dressed, which was a big issue but we'd do it for other things, too. "I'll stand 5 steps from the bathroom while you're in there". when he'd want me to be in the bathroom with him. he usually responded fairly well and it made me feel better that i wasn't, as you say totally "his butler". good luck.

disclaimer - my son is not in exacerbation and in the past few weeks, has been handling disappointments, upsets and inflexibilties fairly well. i've written before that i find the technique from the explosive child of repeating back the concern very helpful. i don't so much believe it does anything to change his thoughts or even behavior, it's more that it helps me remain calm and involved with him but not engaged, so as to not escalate a problem. first, i realize i could have/should have let go of this and just had him pick his own clothes but once we got into it, i felt i had to hold my ground b/c he was being rude and yelling. and of course, it's almost 80 degrees but I got too wrapped up in the point of his attitude. so please overlook my poor parenting of being stuck on minor details. this morning, i said i wanted my boys to wear long pants b/c it was still kind of chilly in the am. they said they wanted to wear shorts. i said, it's chilly, i'd prefer you wear long pants. my older, non-pandas son put on his pants. younger, pandas - "NO! everybody's wearing shorts. I'M WEARING SHORTS!" -- on and on. we started to ignore this b/c we have to get on with life of getting ready -- i had a dr's appt plus painter coming to paint this morning. he usually doesn't so much care about what he wears. everyone got downstairs with him with no pants on and still many variations of "I'm wearing shorts! I have to wear shorts!" my husband tries to reason - "it's chilly. today can be the last day of jeans and then if it's warm tomorrow, you can wear shorts." met by "NO! NO! NO!" and more. then we remembered to repeat. my husband repeated back ds's words a few times. then ds found a quarter on a table, ran up to his room to put it in his piggybank and came downstairs with his jeans. a few minutes later, he asked where his jeans were. "by the stairs". he went and put them on. i think it's something in the repeating that validates his concern but doesn't engage with it and then he can switch tracks in his mind. of course, it doesn't always work as well as today but it's usually helpful on some level.

i've seen mention of kids who don't eat their lunch at school. my son (5, kindergarten) is in a mixed-age class where the "morning children" go home at 11:30 and the "full days" stay the day. based on age, he should have moved up to full day last Jan '09 but that was not possible. since dec, we've been working on slowly adding time to his day. he's still not eating his lunch at school. i don't believe there's a reason other than that it's too "different" from what he used to do. in general, this seems to be true for him rather than related to other thoughts. it's just a mountain he can't get over. he used to sit with the kids but not eat. he does tend to balk at certain group activites at school - i'm not sure if it's too much sensory or not clear expectations or something. they then gave him the choice to eat or to read. he happily picked reading and talks about that he reads at lunchtime with enthusiasm. with other things, he has responded well to systematic desensitization like you'd do for a phobia but i'm not there to do it with him, i think it would be detrimental for me to go into the class to do it, the teacher can't put the focus on him with all the other kids at a rather hectic time. he has progressed from first, needing to eat with me at home, to now eating in the car or eating by himself when he comes home. he doesn't seem outrageously hungry and i don't believe his behavior is different in the afternoon indicating he needs food. i just think it would be better to not go so long without eating and once he got over the hump, he'd enjoy eating with the kids. can those that have had the lunch issue share your stories and thoughts? thanks.

please excuse my poor scientific knowledge, but i think you'll get the gist. we know in pandas, there is an inappropriate response from the body to the strep bacteria. that then starts a cascade that somehow results in inappropriate function of the basal ganglia - yes? my understanding is that that is still not so well understood - whether it's an inflammation, interference and exactly what antibodies, enzymes etc are truly involved; opening of the BBB vs the presence of the problematic material. does anyone know what it is from lyme that results in the neurological issues? is it a similar malfunction of the immune system? does the bacteria itself attack the CNS? does the bacteria itself interact with the brain? is there a similar breach of the BBB with lyme? i guess it doesn't really matter for day to day management, but i was just thinking about it . . .