smartyjones

this was brought up in a recent post but i wanted to pull it out to ask for advice. my son delays peeing - if it were up to him, he'd never go. we conquered a fear of the potty with 73 days of desensitization this summer - he used to not use the potty at all. he can now go at home, at relatives or friends and a public potty with his portable potty seat with a parent present. he does not go at school - he's currently only there 1/2 day, has just started staying for lunch and will try to move him into full day. i'm not so concerned he'll have an accident - he can hold in for 8-12 hours. but my concern is he'll become troublesome, more like a 3 year old who's learning and antsy when he has to go. i can't look at it as he does have the option to go, he can just choose it b/c i believe for him, he sees it as not really an option - it's as if any other person were really in a place w/o a bathroom to use. we have times he pees worked into our routine and for the most part, it works well - morning, home from school, before dinner, before bed. if he refuses those times, when/if he becomes troublesome, we focus on the behavior rather than going - such as you're sitting with me for 10 minutes b/c you were throwing books around the playroom. that was a suggestion from psych b/c if i tried to make him go, it would become a battle. we seemed to have it in a good system now. it was the antsy behavior that would drive me crazy and now if that occurs, i focus on the behavior, not the fact that it would be fixed if he would just pee. i think this is an example of something that developed b/c of pandas irrational fear and has morphed into a phobia and a pattern. we never did discover the root of the potty phobia at home, he just got over it by doing the steps. however, we are working on a desensitization program at school. when i pick him up, we go into the potty and work on one step a day. one day, i pick, the next he does. such as counting to 10 while standing in the bathroom, putting the seat on and touching it while counting to 20. he's been very resitant to sitting, even with clothes. i know we conquered this before but it was 73 days! the psych thinks we should be able to do this in 30 days. does anyone have any ideas? i told the psych that i get a bit frustrated b/c i don't know how to draw the connections for him b/c they don't work - if you don't feel good b/c you have to pee, go pee! if you don't want to get in trouble b/c you're acting up b/c you have to pee, go pee! if you don't want to have an accident at school, go pee! she said, no b/c it's illogical - so he can't see those logical connections. he just has to do it enough times that he's comfortable and that becomes his habit. any suggestions b/c i'm feeling like he's never going to use the potty at school. thanks!

wow - can you come live in my head so i'd be as organized and methodical? this is awesome, i'm going to now construct somethng like this for us. Thank you!

Michael - so sorry to hear - i have to think this is going to lead you in a good direction, though!

my thoughts are a bit jumbled so i apologize if i don't make sense. and please don't be offended. i think i distinguish an "exacerbation" as being a big blip in an otherwise healing road. i think i'd put that healing road at about 90% pre-pandas or more (of course, the pre-pandas qualification gets hard to quantify, esp if it's been a lot of time). if you don't really think you've reached somewhere around that and you feel you should be seeing some result, i might question if it's an exacerbation or not healing. of course, the million dollar question is always - is it exacerbation or saw-tooth healing! and as someone pointed out recently, healing takes time - so it is so difficult to determine. my son first returned to 100% within about 3 days of a 30-day course of keflex. a bit - maybe a week or so - after the 30 days, he regressed. he went back on another 30-days of keflex and did see improvement but not as dramatic. i don't think i consider this an "exacerbation" - i consider it still the beginning of healing. after that 30-days, he was in a wierd limbo state of not terribly troubling but really not good. he kind of just hung out in that state - not too bad but not really improving. if he had downturned then and didn't improve much with abx, i still don't think i'd call it exacerbation, i'd think he wasn't on a good healing path. about 6 weeks after the 2nd keflex we began our current homeopathic protocol which is similar in theory to long term abx. i really felt i saw slow, small improvements inching along. after about 12 weeks, we changed the remedies a little. around this time, he got the flu. many behaviors returned - general obnoxiousness, separation anxiety, repeating words, demanding, potty talk, tantrums. i consider this an exacerbation b/c it was a dramatic, marked difference in his general demeanor. he was negative on a culture, we used ibuprofen and some homeopathy, returned to his previous protocol. thankfully, it wasn't too severe and he is pulling out of it. it began early/mid Nov and is pretty much over - so about 6-8ish weeks. i say it wasn't too severe b/c although difficult, it wasn't a stoppage of our lives. he had trouble going to school one or two days but made it and was okay, whereas last year he refused to go the last 6 weeks of the year. he was obnoxious at a playdate but he could go. one of the biggest things i notice in rating him is a level of reasonableness that is present or absent. through the fall, he was steadily improving in wild freak-outs and although would still get unreasonably upset, he was getting better with being present vs. whacked out.

oh SF mom - 'not too complicated' - you give me too much credit! i'm trying to understand what you're trying to get across lately but my head is starting to spin. you're saying you believe pandas is caused by a particular strain of strep? what to do about it? thanks.

hi dcmom - glad to hear Julia is doing well. sad to hear about your other daughter - hopefully, won't be too extreme. what did you decide to do about your holiday dilemma?

p.mom - just curious, i don't seem to understand your take on this - is it that you are relieved as to a plausible answer as to why their igg could drop? are you expressing concern about the abx having the effect of dropping the igg? or are you just stating a possible relationship without a judgement of good or bad?

vickie - do your other two have any pandas symptoms?

i don't know if there will ever be a way to know, but i'm interested in the recent question raised to dr. T's post (maybe by EAmom) - if there are children who may have been category 1 but weren't 'caught' in time and had lowering of titers and negative cultures. we were 'lucky' in that pandas was proposed to us fairly early in symptom onset - approx 2 months. he had both high titers and positive culture. had that one person not suggested it, we would have tried to treat him behaviorally for years! then what would the results been when we tested titers and culture? looking back, there are specific situations and personality elements that were probably pandas related but all very manageable -- by us as parents 'knowing him', never needed to seek outside help even on consultation level. only in hindsight does it seem to relate.

in light of a recent flu-induced exacerbation with negative rapid and culture, i had already been wondering how much i can trust that culture. so where does this leave us relative to dr. T's recent post cautioning "Strep STILL HAS TO BE AGGRESSSIVELY ELIMINATED once immune cool-down completed" - if one has shown high titers, can that be an accurate test to ensure strep is eliminated if those titers are falling? - can we go off behavior? HOW are we sure strep is eliminated?

i'm so happy to hear you had a good experience at the drs office! interesting about the staph - you had mentioned you were thinking staph - why was that? did the dr say why he was thinking staph as opposed to strep or something else? i thought impetigo was strep? does it matter or just that it is a bacterial infection? so strange too that i had just looked up stye and read about staph and then thought the rash my boys have may not be strep as i had been thinking b/c it wasn't responding so well to the strep abx. it's done much better since last night and the neosporin - maybe b/c wasn't the right abx for it?

isabel - i was putting the same homeopathic drops that we are using for pandas son on the rash - pleo sanum sans strep. i think it's doing well for him taking it internally but i don't know that i can recommend it for the rash b/c it doesn't seem to be kicking it. if i'm adamant about putting it on often, it seems to help - but it's not getting rid of it. my older son seems to be getting a stye. i was reading about that and that said it's often caused by staph. maybe the mouth rash is staph too? that's why i tried neosporin last night. that seems to be helping - i'll keep you posted. i think i'd leave it alone too before the dr sees it. i have a friend who is a big advocate of oil of oregano - what do you use it for? can you get your kids to take it? i've heard it's a bit brutal but i'm interested in it.

oh isabel - what i have to say is not so good - good in the sense that no, i don't think you're crazy, not so good in the sense that i think it's all related. but then again, i think everything is related - in each individual child and for those related to pandas kids. just what to do about it?! my son had a horrible mouth rash last year with first episode. dr's just brushed it off as chapped lips - it spread all outside his mouth and a bit up to his nose when he didn't have a runny nose. i don't know why they didn't think it looked like herpes or impetigo - i've seen some pics on the internet of both that it seems like but no dr was concerned - it wasn't so much like creeping crude of those but still a bad rash. the ND believed it to be related to gut issues. it did resolve some with supplements but seemed helped most by abx. if you want, i can pm you a pic to compare. drs just thought coincidental, i know it's related but don't know how or why. my non-pandas son(almost 8) shows ever so slight pandas symptoms - mainly what we used to refer to him acting like a 13-year old premenstrual girl occasionally if disappointed or something doesn't go his way. other odd things like that he is extremely not adult-oriented, although fine with peers (i've seen others mention similar), has fine handwriting(although has come slowly with perfectionist tendencies) but doesn't like some fine motor skills activities such as tying shoes, folding papers. around thanksgiving, pandas son,5, had flu and pandas exacerbation. son 7, had one tooth fall out thanksgiving night, another within the next week. he started showing some strange behavior - not listening, more emotional, headstrong. all of this is manageable and wouldn't really raise any flags as out of the realm of normal kid mood or phase except that his brother is pandas. we gave him the same homeopathic pandas son is on for about a week and he seemed to improve. there does really seem to be some dental connection for a lot of kids. they both currently have a mouth rash. it does seem to worsen when we've been out in the cold. i was putting the same homeopathic med on it and it was seeming to help but couldn't kick it. just last night, i tried neosporin and it seemed to help. we'll see if that can clear it. i do think it's hard b/c once you know, you see pandas everywhere in other kids, etc. however, i think most of us are in-tune in a good way and what you're seeing in your daughter probably has some merit. just try to not freak out about it (easier said than done, i know) and check out what you need to. here's to a healthy 2010!

faith - my son is quite a bit younger(5) - presents with obnoxious behaviors - if you didn't know, you'd just think he was a hellion, not that anything was medically wrong with him except an extremely bad attitude and bad manners. we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild i could have written this myself! that exact behavior is something he does that is indicative of an exacerbation. otherwise, he is quite a nice boy, not aggressive. so strange, b/c with his exacerbation last spring after he got off first treatment with keflex, we were at a party and he was running over the little kids with a bike! i've seen that enough with him that i consider that one of our red flags of pandas behavior. off on a wild note - there was a post recently about someone who gave her daughter tamiflu 5 months after she thought she'd had the flu and saw good results with pandas behaviors. my son had the flu about a month ago and had an exacerbation. he'd been doing pretty well but remaining potty talk that's part of pandas exacerbations with him. i had given him oscillococcium for the flu and gave it to him again based on that post. so bizarre - could have just been coincidental - he stopped the potty talk. how'd you treat his sickness? was it flu?

*my son had positive rapid strep at 22 months - only symptom vomiting, tested b/c his brother was positive the day before. *approx 2 years later, he complained of sudden eye aches around the same time i was having sinus headaches. dr found nothing, suggested occular migraines, recommended eye dr if continued, went away a few days later. *a few months later, isolated intense separation anxiety incident. a few months later, full blown pandas behaviors. *2 months later, high titers, positive throat culture. we were with a very poor ped who wanted to write him off as a strep carrier after 5 horrible days of azith. *1 month later, switched ped - new dr suspected sinus infection. CT confirmed all 6 cavities infected. dr thought he very well could have had sinus infection back to eye aches approx 6 months prior. he did not have any typical symptoms - possibly some 'normal' colds, runny nose - nothing to note. i asked if he could have never kicked initial strep 2.5 years prior - no way to know but i believe that's probably the case, or it was in a latent state that then was reenacted and seemed to be hiding in sinuses. could it be that strep is like herpes in that it resides in the body until kicked back up?

i don't know about inositol so thank you for posting b/c i'll check it out now. as far as your question, i now stay away from herbal products for that reason - i don't feel i can trust what they will do for his immune system. i do still, however, use vitamin and homeopathic remedies. i'm not sure i can adequately explain but i feel the supplements and homeopathy will either help or do nothing or i'll be able to stop them if i see something adverse but i don't have that confidence in the herbal items. he takes probiotics, kids calm, DHA, vitamin d, a couple homeopathic remedies and homeopathy when sick. a friend of mine who works in a nutritional dept of a large market said she'd be very leery of recommending anything that revvs up the immune system for that reason - she normally goes for what would enhance the immune system if someone is not well. however, with anything autoimmune it makes her very nervous. please post if you get any info from a dr.

yes - that length of time may play into much! my son hasn't really had appreciable tics - at first i thought he'd had none. a few months ago, you and i discussed that issue and i think he may have had some transient ones but nothing really even noticeable to others. he mostly presents with very obnoxious behavior, impulsiveness, repeating and silly rhyming, fear, need for certainty, difficult decisions. he had strep at 22 months. i now think he may have shown slight symptoms but were easily written off as 2 and 3 years old behavior. he was a bit of a quick temperment but totally manageable. last Oct/Nov, he went off the chart with obnoxious behavior and severe separation anxiety. late Dec titers were high and Jan he had a positive throat culture. Jan was the azith and he was clingy, obnoxious, tired, a little aggressive. he got on keflex in Feb. so really only 5 months from explosion of symptoms until keflex help. (4 months until we tried azith)

a behavior therapist suggested it to us - she couldn't 'peg' him with a condition b/c he'd display some characteristic and then disprove it. he was 4.5 years old. he mainly presented with behavioral difficulties and separation anxiety - not classic OCD. she said "what you're describing sounds like OCD but he's awfully young - there is something known as PANDAS."

thanks t-mom - i always feel i learn so much from you!

t. mom - so are you saying a full year from when you knew it was pandas and went on full-strength abx to when you thought you could rate her at 100% recovery?

faith - i do apologize b/c i can't remember your son's recent history with abx and other meds - just wanted to quickly chime in if you haven't seen me write it before - the first abx my son was on was azith and it was terrible. i know many others have great results. for us, even some pandas behaviors that had left returned with a vengenance and i don't believe it to be a turning back the pages situation, i think it was exacerbation. we then switched drs and the new one put him on 30 days of keflex. in about 3 days, all symptoms left. could it be not that abx isn't helpful but you need the right one?

wendy - please excuse my ignorance - are you saying you believe s pyogenes strain of strep is responsible for pandas in all pandas patients? it's documented that about 8 of some 80 strep strains are even capable of producing RH under any circumstances, correct? is this one strain you are saying produces pandas?

hey dut - we use pharmax also - but only that - why do you use the florastor also?

i like the info on dr k's website - webpediatrics.com. i made a copy and highlighted all the symptoms he had.

i believe my pandas son, now 5, got his initial pandas strep incident when 22 months old. my older son had as his only symptom white acnelike pimples on his face. he was positive on the rapid. the next day, 22 month old threw up - only symptom. he was also positive on rapid. they never would have tested him except that older brother was positive the day before.