smartyjones

i just found this website that seems helpful -- i like he way they lay out 'symptom' and then the appropriate accomodation. it's a website for bipolar -- which is tranient as well, so symtpoms are listed as "student may. . . " and then the appropriate accomodation. seems reasonable for what may come up but not saying it's to be done if it's not an issue at the time. http://www.jbrf.org/edu_forums/issues.html

hi cobbie. i think i've thought before our dss have similar issues -- but i think mine is younger -- 7. we have school avoidance issues also. first, i don't think he's playing you -- i don't think it's that simple -- too bad it's not. i don't think a 6th grade boy wants to be bawling and sobbing in front of the school! second, i do believe the principal and your dh may get compliance. the truth is likely somewhere in the middle. can you use the principal and your husband and you to work a plan that is in the middle -- your understanding of the hold the anxiety has on your son and their hard line? for my ds, crossing the threshold of the door holds so much power. the first week was troublesome. the 2nd, i walked in with him -- i got a 'contact adrenaline rush' from walking next to him. 5 feet from the door until 5 feet inside it, i could feel the intensity. when in the class, he's fine and participates much. middle of the 3rd (last week), i felt a drop in that adrenaline. this week, he's dropping my hand soon after the door. do you work ERP plans with your son? i've found much help from anxietybc.com.

so interesting that the intensive FL is less expensive than on-going treatment in your state!! do you continue contact with FL? no, we don't fully know where the issue lies. we have hopefully found a good psych to be able to help us. your thoughts are helpful and i certainly appreciate them. was your dd afraid she'd vomit at school and you couldn't help her? how did you uncover that as the issue?

very bizarre on the same day! i can't help with your question b/c we are in the same basic place. certainly not to sway you from anything you feel you need to do healthwise... just sharing thoughts from our past month. this is ds's 4th week in school and it's been troublesome getting through the door, but once in class, he's great. i've been thinking a lot about stress as a trigger. considering a bit of stress for ds, he's done quite well -- we moved the friday before school began on wednesday, an earthquake during the 1.5 hours this school phobic child was in the building for meet your teacher day, a hurricane and 4 day power outage and beginning a new school. after the first week, ds's face was broken out around his mouth, he was slipping into some obstenant refusals, he was protecting his palms after washing hands before eating, he was asking about expiration dates. i'm sure there's others i can't recall right now. i was starting to panic that he's not really as healthy as we've been thinking he is. now -- 4th week -- he's back to himself. still trouble getting through the door and i come back for lunch -- but he's back to his general self at home and i think the things we were seeing that are red flags have dissipated. i tend to think it's more than just a 'normal' stress reaction. i think it's a bit of a mini-exacerbation due to stress -- whether that's due to permeability due to BBB, increase in troublesome blood chemicals or what, i don't know. so -- your ds's remission may be slipping or it could be slipping due to the stress of back to school -- ?? good luck.

my ds is quite a bit younger - 7- so this may not be for you, but my 9 year old seems to enjoy it also. we recently moved and somehow, ds7 developed an aversion to the CALM he has had daily for over a year now that's it's served in the new house. he drinks it with only a little water, so it is rather strong. the magnesium keeps things 'flowing' which seems to help us all flow much better, so he NEEDS it! somehow, he decided it tasted, 'teeeeerrrrrriiiiilbe'. this is new, so we'll see how long the novelty lasts. i started the worst face contest. he's now eagerly drinking it (a shot glass less than an ounce) to be able to try to top his worst face he's made previously. could be many versions of this -- can you go outside and scream louder than yesterday how terrible this is? i do agree with dcmom in theory. in practice, we've seen ourselves draw lines in the sand and then been stuck when he crosses or doesn't cross (sorry -- i'm confusing my idioms) and we're caught with our pants down b/c there's no logical way to fight the intense anxiety and avoidance and we'd all suffer terribly. we've had to be crafty with what is acceptable, non-acceptable and non-negotiable. ds's main mechanism is avoidance and sometimes it's too strong to cross so we have to have contigency plans that yes -- maybe this end result is non-negoiable, but we'll work together to develop plans that help us reach it. i'll try to explain a little -- ds has school issues. this yr, went fine the first day, then tantrum the next two.(more complicated than that but. . .). if we had just stood with non-negotiable, 'you have to go to school', he'd likely now be being reviewed for 'emotional distrubed status' for special placement b/c he couldn't cross the threshold of the school and they wouldn't know what to do with him. i believe the avoidance and anxiety would not have been conquered. 'flooding' just doesn't work with him -- there's only so long school personnel can spend with him yelling and screaming. we have been working a plan that i walk with him and stay smaller times each day. today, i left after morning announcements. hopefully, end of week, will be just walking to classroom. so -- the non-negoitable is 'you will be in this school buidling for the school day'; the negotiable is 'i can walk with you and stay some time.' if necessary, he knows it could be all day in the end of a blank hallway -- but, he will be in the school building. yes, this is intensive for me too -- the main reason i have not gone back to work in 2 yrs; but, if the non-negotiable was going to school without a fight or by himself, i'm 100% sure he'd now be being referred for a special placement. the kicker being that he's actually healthier than he's been in 3 years and doing quite well in general with stress of moving and beginning school pulling out issues to intensity. we've started with a psych that i'm trying hard not to be too excited that we've found a needle in a haystack, but with plans to help transfer that responsibility to ds to manage his anxiety but at this point, he cannot. so the end goal is he can respond with a strict non-negotiable but now it just would have us all stuck. topaz -- are you working CBT plans or ERP plans? perhaps ERP may be more beneficial -- ????

tpotter -- i hope your plans work out and you get the help from the IVIG. certainly sounds like you have a lot on your plate now, if you find some extra time and wondering what to do (Ha!!), i'd love to hear more about your thoughts on the IVIG and the asperger behaviors -- the actual observations and your beliefs about what/how they were brought about! was there a regression in that social awareness or is it still lasting? fascinating! good luck!

worried dad -- please do post about how that goes. i am interested in ramping down stories. thanks.

hey julia -- are you using the pollen air filter? what do you think of that?

after a year of homeschooling due to impending move that didn't impend so fast -- we are finally back in school -- yeah for all!! not totally smooth sailing as i've posted lately, but going quite well -- anyway, along a different vein . . . the school has posted today how wonderful it is that they are offering the flu mist to students during school. it's not until the end of oct, but i want to be prepared. . . please share experiences, thoughts. i am definitely NOT having it for either ds but, could they be okay in school that day ? - (with DO NOT VACCINATE tatooed on their forehead) -- is it too much potential exposure?; is it enough to keep them out of school for that one day or should it be longer? of course, our major school issue is school phobia, so keeping him out a day is not without issues, but that's what i'm thinking. . . thanks!

arial -- you've done a lot of OCD work, yes? has hoarding been one of your ds's issues? we've certainly had our share of potty issues -- ds developed extreme potty phoba when we tried to potty train at age 3. he got the message to not go in his pants but didn't want to use the potty. what a quandry, huh? his solution was to just not go. for like 10 hours or more. of course, then he'd have an extreme flood. we put him back in pull ups. during the couple of weeks' time he was holding, he threw up and i took him to dr. she said his throat looked 'strep-like' but the culture was negative. this was 1.5 yrs before 'sudden onset', 1 yr after known strep infection. interesting, huh? our potty troubles continued, even included peeing on a towel on the bathroom floor instead of the potty. he conquered it with desensitization from a program on anxietybc.com. 73 days, mind you, of baby steps -- underwear on on towel, towel on potty, etc -- comically until the towel was a little sliver. so, we desensitized the issue in an ERP manner and got him to a functioning level. . . but never really addressed what fueled the problem. he was young and i don't really even know if he consciencously knew the root cause. it did not seem contamination related. i now wonder if it was a form of hoarding behavior b/c may have included 'letting go' of the pee down the potty. ds does not generally have hoarding issues. i've seen a very few, isolated incidents that could be termed hoarding but that were not even really impairing to function, just to make me wonder b/c of what i've learned about OCD. ds didn't care to keep the towels or anything, but it seemed a better solution than the potty. i wonder if your ds could be doing something similar -- in that peeing in the house is keeping him from losing it down the potty -- ??? i agree about wanting to keep him out of pull-ups -- which we termed "kid pants" to help with self-esteem when he needed them. i wonder if you could offer an old towel on the floor of the bathroom --- ?? yes, LOTS of laundry. . . but may help with random areas around the house and keeps the issue in the bathroom -- ??

i just have to shake my head in sad disagreement with you. funny -- we're the 'lucky' ones, huh?

dcmom -- if you can think back to last year, did you know the vomiting was an issue -- or did you just see it as school anxiety? did you see it as a separation anxiety or did you know there was a deeper root at that time? sounds like FL was very helpful for you -- so glad to hear it!

Yes, yes, yes! That's the one! Thank you! And thanks to all you who went looking to help! so sorry -- i was actually on vaca -- can you believe it? can always count on momwithocdson!! isn't that site fabulous!! i have also contacted them via e-mail and they were very responsive and helpful!!

in the past, we have seen success with ibuprofen. i used to refer to it as "magic motrin". we also used to use it occassionally prophylactally -- like before trick or treating or a big party and thought we saw good results. as ds has improved medically, we've seen less success. we last gave it early summer before a party but still saw some behaviors along the realm of our current quest of discerning what is still pandas behaviors vs. what is here due to impaired development due to pandas vs. ds's general personality or issues. at that time, we thought ibuprofen was not really helpful. silver lining being ds was healthier. we've had many changes recently and i've been thinking of the role of stress and inflammation of the BBB in pandas. one of ds's major issues was school phobia. with the start of school, we dosed ibuprofen. ds did fine first day, next two went kicking and screamng, we are now doing a ERP-like plan that i walk him to his classroom and stay in the hall at lessening times. he's working with it but with some resistance. i'm torn -- he's had trouble even with ibuprofen . . . so, is it really doing nothing. . . or would it have actually been worse without it?? my mom, a former nurse, is of the mind that it can't really hurt short-term, so keep giving it. we're only dosing in the a.m. so i don't think we're overdoing it but am aware i don't want to use it unneccessarily. i know some were looking for an anti-inflammatory -- has anyone found a good alternative? thanks!

oops -- sorry -- the line is 'seems more than all the courage. . . " this is a line from an indigo girls song, 'the wood song' that still brings tears to my eyes b/c it seemed to fit about 12 yrs ago when i was having some professional challenges. i'm reminded of it this week as i have worked to get my school phobic pandas 7 year old back into school. in the past 2 weeks, we have moved -- (1.5 weeks after dh had emergency appendectomy); ds was in the school building for 'meet your teacher day' when the east coast earthquake hit (i know, are you kidding me?!), he went to school the first day okay but scared, likely under shell shock; the next two days went kicking and screaming. then, we had a hurricane with 4 day power outage. how's that for keeping pandas stress levels low? oh yeah -- he's lost his 2 front teeth this week. the school has been fabulous so far and have now allowed me to walk with him to his class and sit outside the class. remember, in the beginning of the summer, i was wondering when i'd have time for novels? i've got it now!! we're working on an ERP-like plan to edge off the separation anxiety. he's doing well, with me outside the classroom for the am yesterday, then lunch with me, then class by himself. today, i split the time between outside the classroom and in the lobby, then lunch. as we approach the school entrance, his clutch intensifies on my hand and i can feel his entire body tense. this continues until about 10 feet into the building and then relaxes. it's an intense mental and physical reaction i don't believe he has any control over. i do believe it is literally all the courage he can possibly muster to get through that door. . . but he's doing it!! i'm sure there will be more challenges to face, but i'm encouraged we've got some framework to guide us -- mainly from anxietybc. com and of course, all of you!! we've got a new name of a new therapist who is highly recommended -- i've been so disappointed/disgusted with the psych arena -- but i'm trying to be positive.

i heartily agree -- we all kind of consider ourselves experts. . . but i certainly think momwithOCDson ranks high above us in her learnedness. unfortunate for us now b/c it will be ignorance in hindsight, like a leading OB dr long ago stating dr's didn't need to wash their hands even after autopsies to exam pregnant women b/c "dr's are gentlemen and gentlemen have clean hands"

i'm in!! has he/will he read saving sammy? i guess we were 'lucky' in the sense that ds's behavior was so out of whack with sudden onset - there was no way anyone could be a part of that and not be floored with the outrageousness and absolute necessity to know it was terribly wrong. it does sound like he's in denial and you say he's never been to an appt or dealt with the the kids in exacerbation. it seems he has the attitude of those on the 'outside' who just can't understand until they've lived it. my sister recently took my boys for ice cream and ds had a panic attack when he felt the other boys left him. after 3 years and multiple stories, "oh, wow, he does really overreact" b/c she was the responsible adult. really??!! sometimes it's just not something you can understand it you don't deal first hand. i think the book gave dh a different perspective -- perhaps b/c sammy was older than our ds at onset - or maybe b/c it is a step away from our personal experience ? i don't know -- i just think it was helpful for him in understanding the illness.

i have found much help from the book,The Explosive Child. i see the value not so much as the book may really intend, but more for me, in tools to deal with an explosion or inappropriate behavior and tools to help keep a situatiion from escalating. what i mean by that, is not really having the expectation that the techniques will have a change in your childs behavior -- although we have had some success in discussing things after the issue or inappropriateness -- but that's not really even the pandas issue -- ds does know it's inappropirate when discussed later -- he just doesn't have the correct control at the time. there are tools to help with this discussion -- i think it's always good to get extra tools. for me, the value is on the parent having tools to manage their own reaction to the behavior and not get dragged into it. that sounds a little like i'm obsolving the child and i don't mean that, it's just that the behavior is so out of control anyway. . . you can check out some info if you do a google, but the basic is repeating what she has said without adding additional comments. .. "it's time to brush teeth"; her - "i'm not brushing my teeth"; you - "you're not brushing your teeth?!" stop and do not add any commentary or anything other than what she has said. probably not during the the worst of the worst, but during some impassable times, it helped ds realize he was unreasonable and gave him a way to change his mind and ideas where arguing, explaining, etc only served to solidify his obstinance. good luck!

please forgive if not really what you mean. . . but. . . i wonder how the BBB fits in - ? could it be that something like allergies weaken the BBB and then the antibodies that are always circulating are able to interact with the brain and cause the symptoms - ? i once read something that the content of the blood was a factor in weakening the blood brain barrier. so perhaps it can handle one type of antibody but folds when there are muliple - ? i haven't heard much talk lately as to the role of the BBB in everything.

karen i also see my ds's dr. he is an integrative MD who does a type of energetic testing. i began getting migraines headaches with aura as a young teenager that lasted until i was about 18. they came back after having my first son. i've always had trouble linking triggers -- sometimes seems hormonal, sometimes wine, sometimes lack of food -- but then it seems disproved. dr believed very likely TBI related. i began homeopathic treatment. after about 4 mths ( also around the time i took bentonite clay), i began having more intense and more frequent incapacitaing migraines. then i got a small bartonella rash on my upper leg that lasted just a short time. unfortunately, the headaches continued in earnest - often and intense. then it mellowed to be about every 5 weeks, i have 1-2 weeks of headaches and the intensity decreased. now it's been about 14 weeks with no headache. yikes -- don't want to jinx myself. so -- yes, from my experience, i'd say headaches very possibly related to bartonella.

there are others here more qualified and informed than i to answer, but my understanding has always been that the pediatric refers to pediatric onset. generally, homeopathy is very much about balance -- pretty much the perfect word for it. but as far as life long treatment - i see it as it is a life long challange to keep the body in balance - really for everyone, whether they experience symptoms or not. i had experience and success with homeopathy before pandas, both for myself and my boys -- more things like colds, sinus infection. when we first consulted our current dr, that was one of the things i was most interested in is that they work with the goal being to use remedies to encourage the body to balance itself so that it will be in a state of health to not need the remedy. but you may need to go back to those remedies or others at various times, just as you may take cough medicine or abx for whatever challenge your body encounters. but for us, there is a definite goal of balancing the body and getting off the remedies. our dr works with a type of energetic testing. in the beginning, you see him every 8 weeks. as you get healthier, you wean that off. i think even when he gives ds7 an all okay, i'll have him go back at 3mth intervals and likely 6 mth check ups. i still feel we'll probably have to always keep a close eye on him.

hmmm -- just to confirm i understand -- are you saying the 'herx-like reaction' you had to TSO - which you now believe was a 'worse before better' reaction which has now resulted in positive remission was similar to worse you felt on probiotics and you now think rather than a neg reaction to certain probiotic strains, you could have been also experiencing a 'worse before better' reaction to the probiotic back then that possibly could have gotten better if you'd stuck it out? as usual, wishing for my crystal ball to see the future and how the past could have turned out with different actions!! i actually have a crystal ball my sister gave me -- maybe i should consult it!

stephanie2 - so glad to hear of your success!! thanks for taking the time for such in-depth update. tpotter -- we use homeopathy also but in a different manner than stephanie describes. we use more of a 'sequential approach' that we use the substances to address the infections as you would use abx. as with most things, there are different theories and different approaches. we have seen success with what we are doing. ds7 had multiple infections and while we found the strep connection relatively early, we didn't for the others. he was more severely and longer affected before we started this path. he's seen good results. after 1 yr, 4 mths we're basically at a point of teasing out what are still subtle symtpoms vs. what are effects of 3 yrs of young development affected vs. what is 'him'. the big test for him comes in just a few weeks when he goes back to school -- yikes!! when ds9 started symptoms, we knew what we were seeing, so he was treated earlier. he also had multiple infections but his symptoms were less severe and for shorter duration. . he's seen very good results -- back to normal baseline in about 6 mths -- probably would have been sooner but i had him on a probiotic that wasn't good for him specifically and was causing troubles.

hi darlene. i'll chime in agreement with LLMD and OCDmom, neuropsych testing had also been recommended to us by a pscyh. she was heading that he was having an expressive language problem and suggested we could find out some good info. luckily for us, she said she sees the best results from at least age 6.5 -- halfway into the first grade year. ds was a bit shy of that so it wasn't something we would have done immediately. we never had done it and now i am glad we didn't spend the $ for it. for us, sounds similar for you, pandas hit at a young age (4.5) so it is hard to flush out what may be subtle symptoms and what may be other issues. we've always known(even before pandas) ds has extremely high logic and reasoning -- i state he has a 'puzzle mind'. it could be interesting for this testing to tell us 'how much' that extremely high is -- but really what will that do for us - ? a while ago, i came upon the reasoning that for all of us 'normal' people - what if we all have a cumulative 100% of skills and it's just arranged differently, wouldn't it be reasonable that if a person has 60% in one area, others would be lower. we had previously just been amazed at his high skills, well, yes, it probably does come with some sort of a price -- perhaps balance of other skills. just kind of my thoughts in general, not specific to pandas difficulties. we have recently begun working with a tutor that has a special ed background and has trained with OTs. he did a type of eval on ds - for about an hour - which of course,showed extremely high logic and reasoning - not to the level of neuropsych but not to the expense either! he told me of another client that recently began that had stacks and stacks of tests and evals but the child is still having big problems. he(the tutor) was aghast at all this information but lack of help for the child! i think ocdmom is correct -- the value being in showing it to the school in a manner that speaks their language rather than having them just think it's overbearing mom making excuses or explaining behavior/issues. when this whole mess started for us, we consulted a naturopath, she said of testing that early in her practice, she ran a lot of tests. it's great to have all that info, but she now only runs tests that are going to influence the way she treats. i think that applies here too -- what are you really going to do with the results? then, add to that that the results may be based on symptoms that may change.

stephanie2 -- i can't so much compose a coherent post about this right now but wanted to say i'm right there with you!! how ridiculous, right? your child is doing well and you're still a wreck. or a different kind of wreck. it seems unbelievable. right now, i'm rather emotional b/c we are moving and it's generally stressful -- along with a glitch last week with buyers and dh had emerg appendectomy - but i'm emotional saying good-bye to this house where my boys were such sweet little babes. and feeling remorse the last 3 years have been tough. i have found help with upsets/outbursts of my own and panic and indifference with the remedy sepia. maybe check it out or discuss with the homeopath - ?