smartyjones

hi kari. sorry to hear you are having trouble again. we are in a similar boat. we are currently trying to slowly move my son into full day. 2 weeks before Christmas, he started staying for lunch. this week, we added the extras of music and spanish and he is staying until 1:15. he is more of an all-or-nothing personality - both related and unrelated to pandas, i think - so it's better for me not to be there. the first day of the change, he resists with crying, yelling etc. but then gets used to it and is okay. by the third day, he's okay b/c this has become the 'new normal.' one thing that was helpful over the summer - b/c he refused the last 6 weeks of school in the spring - and i was very anxious about what would happen this year - we happened on a book at the library called Brave Ben. it's really cute about a scared kid who doesn't want to be scared and calls the magic tree for help. we wrote our own story based on it. and i must say, it's quite a masterpiece. i found some great pics on the internet - interestingly, he didn't want any pics that were real people and he was sure to remind me it was about someone else, not him. the first day, we talked about the story as we were walking in - the dragon coming up as we got out of the car, the spider trying to wrap him up as we walked through the gate. this kept him off the panic. when we've had trouble these past few weeks, i've again talked about the dragon as i've dragged him out of the car or the witch as we walk in the door. he does squeak out a smile in spite of himself. i think it helps b/c it has some function of switching his track of mind where we haven't yet found the thing that is going to do that, in more of a traditional CBT or ERP way. i do believe these types of things are helpful as coping mechanisms while the real culprit is medical but that we need some things to get us through while healing is happening or in the midst of an exacerbation. good luck, Kathy

reneegavin - all before her first known active strep! the strep that i believe got the ball rolling for my son was when he was 22 months old. the only reason he was tested was b/c my older son was positive on a rapid the day before and younger, pandas son threw up the next day. that was his only symptom. otherwise, it would have been assumed he had some viral or some something and no one would have tested him for strep. it could have progressed and gotten worse and then been discovered but maybe not. his clear pandas symptoms didn't appear until about 2.5 years later. my older son's only symptom was an acne-like whitehead rash on his face. other than that, he was fine. the dr. was actually shocked the rapid came back positive - she didn't think it was strep but just tested him to rule it out. the symptoms you describe may not be pandas but i wouldn't be so quick to rule it out. and i definitely do not believe the carrier state is "benign". i have not been able to have a dr. give me a coherent, sensible explanation of that - i don't believe they understand it themselves. our current ped is the most honest and just kind of shakes his head and says, 'yes, it's a very difficult concept.'

we are working to get my son full-day at school by adding small increments of time. with each step, he very much resists at first b/c it is "different from what I usually do" but adjusts fairly well in a short period of time - 2-3 days. he had that bad episode of cognitive inflexibility last week and a couple other things on the weekend, although not extreme. i do think he's still recovering from an exacerbation -- but improving, not downsliding. this week, he was to start going to music on monday after lunch. we then decided that he should stay until that same time each day rather than starting over next monday. i gave him ibuprofen in the am b/c i thought i have seen good results with that in the past with an exacerbation. was thinking i'd kind of pull out everything i could in the arsenal to help this work. monday was difficult as to be expected but he did okay. fought going in the am - upset in the car, yelling & kicking in the room but settled fairly quickly after i left. he didn't really participate in the class but was not fighting or troublesome. tuesday, he verbally resisted, I carried him into school but just put him down and he stayed w/o a fight - although this plan is not really his choice. he do participate in class, probably not to full but still involved, was very excited about the kid he sat next to at lunch and all their plans about a fort. today, went to school totally fine. i don't know the role ibuprofen plays in this -- could be helpful, could be doing nothing. those who use it, can you tell me if you do constantly, periodically or your schedule with it. how do you decide when/if/how? thanks.

thanks for that referral to the ocd chicago website. so what does your son do about it if he does that with a math quiz or some other situation that he's in lock-down?

sounds like you know what it is and are getting treatment so i have nothing to add to that except to reassure you that my son did have whacked behavior like what you are describing. one weekend that was the worst, we were in the grocery store and he was totally out of control - grabbing, running, laughing. i took him out and he was very upset that he wasn't in there to check out with his brother and father. we had a rational conversation about being calm and using nice manners. we got to the car and he flew over the seat and began honking the horn like a madman and laughing. as far as the teasing - i saw it once written, 'seems to deliberately annoy' and that's what he would do - kind of in a challenging way to me. good luck with the treatment. i didn't know about ibuprofen then but it may work for you.

would LOVE to meet! i live in Annapolis, but grew up a little bit north of Bethesda so I know it well. although downtown has changed a bit since i was in high school but i can still find my way around! (like when my son asked me if they had baths when i was little!) wednesday would be better for me.

i just reviewed a post from dec about steroids as treatment. with some responses lately, it seems many people have seen great results from adding a burst as an additional treatment - not as a test for effectiveness of IVIG -but to kind of kick it up a notch from a plateau or exacerbation. if you have any thoughts you haven't posted in a while about steroids as treatment or any updates if you've done it, i'd appreciate it. i'm trying to think of the positives - kayanne, vickie, dcmom, tmom, mati's mom - right? mdmom, your's was positive also, right? buster, worried dad - did you ever do steroids as treatment? please post negative experiences as well. am i right that the theory is similar to ibuprofen but stronger - reducing swelling of the basal ganglia and/or close the BBB? is there anything else it's supposed to do? thanks!

excellent idea Mom - happy to see these stories and excited to hear more. if i could ask, could people be sure to write what they believe the success is attributed to. thanks.

we did a food igg test when we were first trying to discover what was going on. i think it was for close to 100 foods. he was off the chart reactive to over 15 foods - all dairy, both egg white and yolk and most grains. i've posted about this and sorry but i don't know how to link a post. you can search under my name and see if you can find it. basically, we took him off those foods at the same time he went on keflex for a month. even at the time, i thought the improvements were due to keflex. he's been not eating those for almost a year. he had a backslide when got off the abx and an exacerbation with the flu - both while on this diet. bottom line, i keep him on this diet not b/c i see an measurable changes in him from it -- i do it as another measure to try to help 'calm' his immune system b/c i think it's not functioning correctly. i think it's just another piece of the puzzle. he's always been a bit small (of course after 9 lbs, 3 oz birth - now he decides he wants to be a 10-20%ile person!) during troubling time, he was getting really scrawny - he was falling off the chart at this time so i was very concerned about what would happen if he ate this way. i kept track of what he was eating and a few days counted calories for both my boys - very tedious! he gained something like 4 lbs in 6 weeks - at the time he was only about 32 lbs so it was considerable! he's still on the thin side but looks quite healthy and seems to be growing better this past year than he had in the 2 prior. we consulted 2 traditional allergists who do not believe in that test(one directly for the test, one for general pandas- he's an allergist/immunologist at hopkins) - they agree his immune system produces antibodies against those foods, they just don't care. he's not showing any outward signs of a problem from it. "so what" - direct quote. i liked the hopkins dr and asked what about the theory that his immune system is spending time doing this, couldn't that cause him problems that may not be seen but in the future. he was very respectful and said there is a school of thought that says exactly that but there's no science to prove it. i think - if you can't tell me why kids develop diabetes and other chronic diseases, or have extensive info on pandas and what's happening with my child -- it can be a viable theory. it's surprising that it's not as tragic as you may think - there's a girl in his class that eats similarly b/c her mom is a naturopathic nutritionist. he eats a lot of meat. he doesn't eat fruit or veggies, if he did, i think it's be a breeze. let me know if you have questions or need to suggestions -- we make really good pancakes, muffins, cakes. we eat rice and potatoes and rice pasta at dinner. however, we do still miss good bread with dinner!

meg's mom - i do so appreciate all your long posts and good advice! here's where i get hung up - he's not an active participant so the fear thermometer has to be done by me unbeknownst to him - at least that how we did the potty desensitization and what we're doing with the school potty. he can do a step a day but will not participate in any preplanning. i have a chart that i write the step on after he's done it, it's a type of fear thermometer with 10 spots(you could use it for fears from 1-10, but he won't - we just write on it), when it's complete - we have a basket of wrapped small $1 store things. he is very happy to get one. however, this is an added bonus to something he is willing to do already - it would never be a motivating tool. nothing matters as much as what he wants to avoid. early on in the potty training, i jumped ship from rewards, etc b/c it was only serving to drag me further into it seeking out what 'it' was going to be that was going to make him act. i truly believe when his mind is set to avoid, he'd sit in a burning house rather than do whatever it was. i do appreciate what you say about what we see being the tip of the iceberg. you've given a lot of good info and i plan to go over it in better detail as well as get the worry hill book. from another post you wrote, i would say he has avoidance as the compulsion. now - how do you resist the compulsion if the compulsion is avoidance and he's not a willing participant. i seem to understand how you would work to resist not washing your hands for 30 seconds - i can't seem to wrap my head around how you resist avoiding doing something other than to just do it and therein lies the whole issue. thanks!

faith - i do believe it can come from fairly short-term abx use. my son was on abx for 30 days each last feb and may. i noticed the stains sometime in the summer - after he was off the abx. it came off at the dentist with a normal cleaning - a little more scrubbing from them but no special treatments - that appt was probably sept. the hygenist said she didn't think it would come from usual dose of abx of 10 days or so but definitely believed over a month could do it.

this is the thing i just can't get about OCD - does it have to be tied to other thougths of calamity or can it just be that he wanted that order and it's not fulfilled and that's that without anything else? so what to do about it? push it so that things are out of order and he has to deal with it to get over it? if it had been some other situation, i would have done things differently -- one other time he didn't want to go to someone's house for XYZ reason, i can't remember. i said fine, you can stay in the car if you want, you've got books, you can read, we planned on going and we're going. by the time we got there, he'd decided he did in fact want to go and it was all okay. however, this was my friend and her 2 year old - so neither would care if he obnoxiously threw a fit that he didn't want to be there. today, this other kid loves my son and would be so upset if he heard him say he didn't want to come to his house so i couldn't just push on. generally, what's the answer? continue with the plan that is out of order?

good thoughts - i'll have that discussion tomorrow and see if we can turn something positive out of it! what would 'just right' OCD be to you - like having papers lined up correctly? since you've dealt much with OCD w/o the pandas element - do you believe it have to be tied to a web of thoughts and consequences or can it just be b/c that's the way it's supposed to be?

yes, i do feel for him that it wasn't what he had in mind for the next playdate with this kid. it's just so extreme and so non-bending - not even entertaining the thought of bending. yes, thank you - maybe we can conquer something similar and that can be a reminder. thanks!

[quote name='ajcire' date='Jan 8 2010, 09:49 PM' post='51173' With my son it is that cut and dry....if he tells me he will do something after a certain demand is met, he will do it. It's as if nothing ever happened and he's fine... It's beyond him being a brat and just wanting to get his own way though. He truly can't get himself together until it's done. I never thought of it as ocd with him but more as an inflexibility but I don't know. ajcire - sounds very similar! so what do you do about it? this one, i can cut him some slack b/c we did plan in Dec that the friend would come here, he was excited about it b/c this kid has never been here and that plan got messed up. so i see his disappointment - but it's so extreme to refuse to go until that plan has been satisfied. how do you deal with these situations?

thanks Karen. i appreciate your long post but still had a couple questions. she had excellent control and never had an accident--I've often wondered if her control was somehow related to the OCD. --yes - bladder of steel -- most people don't believe me that he can go 12 hours. today, it was 11 hours when he started becoming troublesome. Her reluctance to go the to bathroom was probably the very last PANDAS symptom to go. It got to a point, where we had to just tell her that she was not to have an accident, and she could go when she wanted to. But it was still a conversation that went something like this: "I think maybe I have to go poo, but I don't want to." "It's okay if you don't want to go right now, just don't have an accident." Usually she would start to cry if we tell her she has to try to go, but she would be happy when we tell her she can wait. -- how old was she at this time? did you just let her go on no matter how long it had been? Sadly, I know that many of you are dealing with a chronic case, and have to do all that is possible to help your children cope in the outside world. Please, Please don't take this the wrong way because it is not intended to be critical at all (just trying to interject a different line of thinking)...it is just that if you are confident that your son won't have an accident at school, then right now, is this a battle you have to fight..or can it be put off a little while to maybe a point where your son is a little more healed? -- i do feel we are at a bit of a cross-roads b/c he is doing well in school and he should have been full-day a year ago. he is doing really well in school and they'd like to see him with his peers. the psych does feel that since he's doing well now, we should push b/c she doesn't want the gap between him and his peers to increase. she's looking at that we could get him into this now and have him with his peers vs. not pushing and having him lag behind which with his phobic-tendencies could create more troubles and things to fear as that gap grows (or has the potential to grow over the next year). i do agree and i think he's never going to decide he wants to use that potty at school on his own. so i do think there are elements of helping him to cope in the world involved. the plan is to try to get him to use the potty but to move ahead with him transitioning to full-day. i just feel bad b/c i know if he does feel like he has to go, he won't have an option there. my 8 year old doesn't use the potty at school often but i know that if he has to, he will. pandas son will be like if i was in an office bldg all day that didn't have a bathroom and i know how unhappy i'd be. We now try to gently ask her why (or what was she thinking about) as it pertains to her PANDAS behaviors, and when asked about not wanting to go to the potty, she said she doesn't even know why she didn't want to go--I wasn't about to ask if it was because of germs. When we discuss it we try our best to get her interpretation, and not plant ideas into her head. --we just had a cognitive inflexibility issue today that is more of a random nature. the potty is lower level but more constant. i posted about that asking if people thought it was something to work on with other means - CBT, ERP - and the consensus seems to be that those are not really so helpful and it's part of the medical issue. do you believe from your experience, that these potty issues are the same - mostly treated with the medical treatment? can you just quickly remind me of what your daughter's treatment was and what you're doing currently? thanks!

thanks for the input. so he ended the day not so good with 2 other incidents - i've started a rating system like Buster mentioned in a recent post. his day was 22, throughout the last week or so would be around 10. his recent exacerbation, probably high 20s/30s - as was Sept. initial episode months would probably be 40s/50s or higher. thanks again, Buster, for that system - i think it's going to make it easier and more objective. could i ask - you're daughter seems to be doing quite well - do you rate her near 0 or is she still with issues that you rate? for him, an incident like this comes along every 2/3 months. i looked back and last was mid Oct. however, we do have the ever-present lower level potty delay. again, seems no connection of thoughts as to why. the psych has cautioned me about probing to find causes and injecting thoughts that he may not even have. do you have any thoughts about how you 'carefully pick' to find the cause without giving him ideas that he didn't even have? i asked tonight about the friend's house and he said yes, he'd be happy to go there the next time -- after he comes here. i really do think it's that cut and dried - it's just the way it is. his plan was that the friend came here the next time and we were doing something different. does this fall into 'just right' OCD even if it doesn't have a connection to thoughts? does it matter what it's termed? am i understanding that the general consensus is that this isn't something that can be worked out with other methods but is a part of the general healing of pandas? there's nothing to do but medical healing?

i am curious what those who are more experts in OCD would have to say about random episodes of cognitive inflexibility. i believe this to be related to pandas but not an 'active' symptom. my son is doing well pulling out of a recent exacerbation i believe triggered by the flu. however, he has some incidents of cognitive inflexibility. i think this is like a 'hold-over' that needs to be worked on rather than an overt symptom to be helped medically. obviously, it's an example that he's not 100% but i think it's something that would come over time with future healing and could be helped with other interventions. there doesn't appear to be a complicated web of thoughts related to these. example - today he was supposed to go to a good buddy's house for a playdate. last time, my son went to this kid's house. he had wanted the friend to come to our house. the date before Christmas fell through. i hadn't gotten it together plan something else and the friend wanted my son to come over. it worked better to go there, so we planned that. last night, my son was complaining that he had wanted his friend to come to our house, then said he didn't want to go, then said he wanted me to go with him. today when it was time to go, he refused. yelled, kicked, couldn't get off that it was supposed to be the friend coming to our house. ultimately, we cancelled. he took not going over going because to him, it was supposed to be the friend coming over to our house. if it was only us, i would have made him go and knew that he'd get into once we were there. however, i didn't want to expose this other kid to my son yelling and screaming that he didn't want to be at his house. i don't think it's an incident of just being bratty or wanting his own way -- it's more a deep seated thought that the friend was supposed to come to our house next and he couldn't get off it. any thoughts? thanks.

i have wondered about a possible link also. when i got my sons medical records, there was a note that i had called concerned he was having a reaction to the chicken pox vaccine. i was surprised to see that b/c i didn't recall that. neither me nor my husband had any recollection of that. it couldn't have been much if we didn't remember, but it does make me wonder b/c others have suggested a link.

vickie - so how did you deal with the fact that the goals were not his? how did you get him to participate when he had no desire, thought or motivation to change? i've been able to do some things with my son just by making them part of the routine but i do get hung up on the fact that the goals are really not his so he has no motivation to work toward them. the potty has really been our main issue as far as this is concerned. he now goes at home, not at school. if he doesn't want to do it, no 'thing' or priviledge matters. i could go on and on about all the rewards that were left by the wayside when trying to potty train. nothing is as big as not doing it. i agree there has to be something but it's impossible for us to figure out. the only way i've been successful is by getting it into the routine. like now, we do a 'step' in the potty at school when i pick him up. i get worried that we're never getting to the end goal - he'll participate with the step but only so far. thanks

thanks so much for replies. . . this is something so strange that you can't have an appreciation for unless you live it so i'm so happy to hear of other's living it - although, sorry that you are! for 2 years, well-meaning people and even professionals just wanted to discuss power struggle with me and could not comprehend that it was not a power struggle! so happy for the comraderie - albeit strange comraderie, but i'm still happy for it!

i do think that is a valid concept and probably two sides of the same coin. My son had "sudden onset" at 4 years, 4 months with extreme separation anxiety resulting in extreme school refusal. It's a Montessori pre-school ages 18 mths - 6th grade. it's been around for 25 years. they had never encountered such a thing. this was coupled with obnoxious and other troubling behaviors. obviously, sending us for help. however, 3 months prior, he had an isolated incident of extreme cognitive inflexiblity and separation anxiety. we were on vacation, at a wedding - so many ways to 'justify' it. he'd had strep at 22 month, 2.5 years prior to 'sudden onset'. in the following 2 years, i usually termed him as "more tempermental than your average kid' and with a "defiant streak". not that we couldn't handle or was troublesome to stop or even change our daily life. when potty training at age 3, he developed extreme potty phobia -that was the main troublesome issue and obviously very odd. i now believe all of this to be pandas related, however, at the time, it was all within the realm of 'normal' 3 and 4-year old behavior. i do agree with the 'tough nut to crack' theory - from the other side. even though i believe he's been affected by PANDAS for quite some time, we were relatively lucky in discovering it when things exploded and i believe he's responded well to treatments. i think he falls into dr. T's category 1 and did see immediate improvement with abx - although backslid when got off abx. not sure this will be helpful but . . .we are following a different treatment path than most but if anyone is interested - and this is something i don't really understand - i believe it's an equivalent to "intercellular" but they term it a 'cell wall deficient' microbe (i think it's microbe, but i know it's cell wall deficient). point being that what is troublesome is not recognizable by the white blood cells so they cannot eliminate them from the body - they just hang out and continue to cause trouble.

we've not seen dr. L but something that has helped me recently with drs visit - especially the psychologist -- i've typed out in outline form what i want her to know and what i want to know from her. i've given her a copy - she's looked it over as we've talked and drawn out what she thinks is most important to focus on. she can get a good idea in 5 minutes why i'm there where previously i would have spent the whole time going off on tangents, stories, etc and not been able to get to everything. it's a good idea too to actually check off with a pen your points on your paper so you're sure you've gotten to them. good luck.

oh mom - hilarious! i guess i didn't make it clear - he prefers to sit. a year or so ago, my sister tried to get her son to interest him in peeing on trees, rocks, etc - most boys dream - no go. thanks for the ideas - i don't actually think he has contamination issues with it, though. that's part of what's so frustrating is that there's no logical flow, even in an OCD illogical sense. i really don't think he has any reasons - it's just a block. of course, i realize there's got to be something, somewhere, somehow but i don't think it's even close to a conscious issue for him. it's just not what he does - he doesn't use the potty at school. it was how it was at home too before - it just wasn't what he did. once we did the small steps, it somehow morphed into what he did and then it was okay. he doesn't really seem to have this intense block with other issues, the potty is the one. (of course, during pandas episode that wasn't so) i question if he actually has OCD or specific phobia. i see that it could be a form of OCD and if it is specific phobia, the treatment is still basically the same, but how do you work with it when the person doesn't really have the flow of thoughts and the goals are not his own?

in thinking over my son's recent exacerbation, i think i realize something strange. he seemed to have almost neat little packages of behaviors for short periods of time. i believe it was caused by a virus not helped by that we changed his treatment regime. initially, i thought he had never had tics. i now realize he could have had some minor ones when pandas first surfaced, about a year ago. he'd been doing really well, most troublesome behaviors subsided but i wouldn't say 100%, getting close to 95%. about 8 weeks ago, the first thing i noticed, was some mild finger movements and a flicking of his fingers against his face. this lasted a few days, probably not more than a week. then he had repeating words, silly rhyming, some impulsiveness, obnoxiousness. then he had resistance to a bath and hair wash. somewhere around this time, he had a short flu. more behaviors came after that, such as separation anxiety, obnoxiousness, potty talk but he was again fine with a bath, not really repeating words. my husband thought he had to have strep b/c of his behavior - he'd rate him close to initial trouble, culture was neg, i thought it was due to virus. around Christmas, the majority of the obnoxiousness were very slight, he began with inappropriate upsets. the past week or so, he has slight inappropriate reactions and upset, not really obnoxious behaviors. as i write this out, it sounds like what people talk about with turning back the pages but i think he was doing quite well and then had a downturn exacerbation not like when people begin a treatment and see turning back the pages but it has been kind of in these little packages. any thoughts?