smartyjones

so i made a beautiful picture christmas card -- a couple of fun pics. one i was unsure of b/c i thought ds looked sick. it was at a ropes course about a month after horrific herx-like reaction to antiviral. he restricted eating/drinking for about 2 weeks w/ about 7 days of touch and go with just enough to keep him from being IV hydrated. the pic is cute b/c he's proud and it looks fun. i was unsure if he looked sick or not. dh liked it and thought it was good. it was on-line so i didn't see a real proof. they came today and the whole layout is really great. however, i keep focusing on that picture. he looks thin and sick. if i had to do it again, i'd pick a different pic but i don't think i can waste this $ and make another one. the good news is ds is doing much better. in spring, integrative MD diagnosed multiple infections. he's cleared almost all -- strep still being troublesome. behaviors wax and wane but have been on an uphill trend. dr is very encouraged, just believes it's a long time healing. i'm up and down on this --- i don't want people to receive the card and think he looks sick -- however, he's healing from strep and lyme and that's our reality. i know in the span of relativity in other people's troubles and even in our own in the past two years, there are much greater things to be upset about. but i do feel upset any words of wisdom for me?

in a healthy child or a healthy child with no siblings with other issues such as pandas, i would still believe it is the body's natural defenses. in a child with pandas or even a sibling with pandas, i would take it as something to investigate further. at the time, for my son, we didn't have any reason to investigate further b/c the fevers were short-lived and not too often. however, now i do think it was from an unresolved infection. perhpas his body was dong 'okay' except when encountering another virus or bacteria and then it would resolve 'enough' but not fully until it was just too much and then we saw big symptoms. i only think that in hindsight -- if he were healthy now but still had random fevers, we'd still think it was how his body handled what he encountered. again -- this always brings me back to the same issue -- how far do you investigate? what can you really do without big symptoms? you can't always be jumping over every little thing. once you've ruled something out, you can't be jumping back to it. you have to on some level, treat what you see and investigate reasonably but there are so many possible bacteria and viruses. i do wish we could test for every possible thing but i also see that is unreasonable. for us, we had clear strep indicators. however, he wasn't fully healing. that's why we investigated more and we did find more. is it just a case of 'the more we look, the more we find'? were those other infections at play in the symptoms we saw? or were they viruses and bacteria that all of us may have inhabiting us but don't so much cause trouble? were they infections that were not showing symptoms but were inhibiting kicking the bacteria that was causing symptoms? we'll never know. i find myself more and more of the camp of trying to ferret out all infections. i still know it is far off, but it's my hope that there will be a protocol for extensive infection testing for pandas/pitand symptoms and for slight symptoms for siblings of diagnosed children.

my son would have random fevers and/or vomiting. it may have been once every 4-6 months or so. at the time, we thought that was just how his body handled whatever it had been exposed to. he did have confirmed strep at 22 months. i can't remember if the fevers were before or after that. at pandas onset at age 4 1/2, he did have a positive throat culture. we've since discovered other infections, including lyme. i don't think we'll know for sure what it was due to. he hasn't really had that type of fever or vomiting since first on abx for pandas almost 2 yrs ago. now, just my belief, but i think it was probably low grade infection of strep, lyme or something else was residing in his body, perhaps some other new infection pushed him over the edge and we saw a symptom.

i do try to be careful to attribute comments to other people -- however, this was such a good comment -- this is MY INTREPRETATION of what dr. L said at the OCD conference. . .'the thoughts and fears of these kids are such that they will never tell you what they are.' that statement did make an impression on me. i do agree that age 3 is a tough one to figure out what you're trying to. . . just my opinion, but i would err on the side of caution and think that he is really having fears. my son tends to have 'just right' OCD or sensory issues --- we've gotten to the point that i can ask him 'is there a reason?' he can usually state "there is no reason, it just is" -- sensory or just right; "there's a reason but i don't want to tell you" -- likely some fear or anxiety basis he can't or doesn't want to verbalize; or "there's a reason that no one can ever, ever know" -- during a herx-like reaction to an antiviral resulting in classic, textbook contamination OCD with eating/drinking refusal. could you try to work some system to gauge what's going on to develop strategies without having to have him actually tell you the fear?

grace -- my son is quite a bit younger - age 6 - but has always had potty issues. when we first tried to potty train, he developed an intense phobia. no one we sought help from would give me credit that this was something different than your average run-of-the-mill power struggle. i knew it was something different. are you using ERP to help with his OCD? forgive that i am not as schooled in OCD as some - perhaps someone else can chime in - there is a type of OCD where it can present like this that it is a type of hoarding but with body fluids, etc. there can be something wrapped up with letting go. i don't know if that fits for him, but do you know what is going on with him not making it to the toilet? could it be that he is actually fighting for it not to occur? is he having some contamination issue with touching the toilet? for us, we used a step by step desensitization from anxietybc.com. my son was peeing on a towel on the bathroom floor. we slowly added a new step each day, moving onto the toilet, cutting the towel to little shreds. he now sits on the toilet and pees on a piece of toilet paper that he then drops into the toilet. eventually, we'll work to drop that but for now -- i just think. . . who knows what people do when they're in there so peeing on the paper doesn't bug me. when we did this, nothing ever came to light that was the problem. check out anxietybc.com for their worksheets or let me know and i can try to help. basically, you'd figure out what he's okay with and that's day one, step one. you pretty much know -- paper towels. maybe you could get some depends or use paper towels if that's good for him. give him that for day one, wherever he's comfortable. maybe day 2, he uses a depends in the bathroom. maybe day 3, he uses a depends while sitting on the toilet. it's going to be tough b/c of the nature of the issue, but see if he can work out with you a plan of how ever many days it takes to get him using the toilet again, in whatever steps he thinks is doable. then stick to the plan. if he fails one day, that's okay - he has two days at that step and moves on the next day. if he can't progress, break it down even smaller, so that he's always doing something even a slight movement. sorry - no pun intended! but thought i'd leave it to try to lighten the mood! i don't know if you'd use rewards for something like this or if using the toilet successfully is reward itself - ? -

i googled after EA mom's suggestion -- there was discussion on this forum in Sept -- don't know how i missed it -- kimballot and vickie, i think? i don't know how to post the thread. Tmom -- did you see that? i don't really know of this, but seem to remember from Cure Unknown some talk about treating lyme with a similar method that Dr. Shulman suggests in this clip -- treating with abx, stopping, starting again when symptoms return, stopping, starting again. i guess pulse treating -- but i think based on symptoms not a set schedule.

darlene -- my ds had a fairly quick diagnosis from 'sudden onset' at age 4 1/2, (about 3 months). he had intense, disruptive school phobia as his major symptom and many other lesser -- clingy, loud talking, chewing on shirts, intense thirst at times, irritable, not cooperative, very tired in the afternoon, bad breath, obnoxious and out of control at times (he called it 'funny manners'), hyper-sensitive, silly rhyming, repeating words, 'butt talk'. our ped was pretty useless but referred us to a behavior therapist. at our 3rd appt, she said she was a little stumped b/c he'd seem to have behaviors characteristic of something -- like aspergers -- then he'd strongly prove that wrong. she said to me, "what you're describing sounds like OCD, but he's awfully young." she then looked up pandas on the internet. he had high titers and a positive throat culture. funny thing was -- i didn't think ANY of what i was describing sounded anything like OCD! many people i talked to looked at me with a kind of condescending look and 'he's just a boy' attitude. well, he wasn't that obnoxious boy 3 months prior! also, it was hard to explain if you didn't see it -- his actions were infused with this odd, wild, 'wrong' energy. my son does something like you describe of having a fit if his brother sits in his seat -- he can have inappropriate possessive reactions. for him, i think it's more a 'just right' OCD that that's not the way things are supposed to be.

does anyone who sees one of the neurologists -- dr t or dr l -- have insights on this -- as far as memory or seizure activity -- pandas related? during exacerbation, my son couldn't keep the days of the week right and in order. previously, he absolutely knew them. for him, i don't think it was ocd reassurance, it was a disconnect. he does often and repeatedly ask 'what are we doing today?' in the am. that, i think, is more of an ocd need to know issue. i myself get migraines with aura. recently, one night after a headache, my husband was speaking to me -- i could hear him as far as volume, but i kept asking him 'what?'. it was bizarre, i could hear him but couldnt' seem to process what he was saying correctly. my son does have times when he asks 'what?' repeatedly and inappropriately. i wondered if that is something similar that is happening with him. tpotter -- how did you determine the seizure activity? EEG?

i second that as REALLY GOOD advice!! ds had 100% remission in about 3 days of 30 of keflex. we finished the keflex and thought he was cured. he backslide after about 30 days. back on keflex -- it was all so in the beginning -- i didn't realize it was a lower dose. after about 10 days, brought him back up to previous dose but he didn't see the full turn-around that he had previously. since then, whenever we've reduced strep meds, he's backslide. in the realm of 'if i knew then what i know now', i'd say put paramount importance in changing slowly and one variable esp when seeing good results.

yeah - right -- that's what we need! a few months ago, i was really struggling with ds, 6. how can he flip my buttons so outrageously when i truly believe he is sick and not responsible for the oppositional defiance but it is still so difficult to deal with on a daily basis??!! above all -- i do believe it is the medical issues that must be corrected either eradicating infections or calming autoimmune reactions. there's simply things he did not previously do and doesn't when on motrin that i must attribute to pitand. but while on the path of healing, i think it's important for the parents/teachers/caregivers to have coping mechanisms in place. we have not been able to find helpful professional help -- have used tips from this forum, Explosive Child book and anxietybc.com for help much better than any pscyh and behaviorists sought. for ds, he can follow procedures that we impose and can learn -- such as slowing down and trying to find solutions when inappropriate reactions strike -- but it is heavily adult regulated. he can't really 'own' the techniques -- i'm not sure if that's age, immaturity, or brain function. i tend to think it's the illness and use these techniques to help us cope rather than changing his behavior. i found the book When Labels Don't Fit very helpful recently when seeking help for oppositional defiance. it has some techniques to use that made life smoother for all of us. his troubles usually fall in the realm of 'just right' OCD or sensory troubles. i found it a good mix of not totally cowtowing to his needs and differences so that he is controlling all of us but working in ways that can allow him what he needs in reasonable fashions. more along the lines of helping modify his issues for him to better function in the world than either having it all on his terms or forcing him in ways that don't work for him. oh and yes -- i think that sounds like some fabulous good signs in a short period of time! we've seen behaviors melt away. i am always rather cautious though b/c ds had 100% remission in a few short days when first on keflex initally (after horrible 5 days on azith-- ? could have been herx when we didn't know lyme was involved - ?). early on in pitand journey and i thought he was cured. he relapsed when off keflex and i was devastated, so utterly unprepared for that. we've later discovered multiple infections and it's a long journey healing them all. so, i think you should rejoice in what good you've seen -- just be aware of cautious optimism and don't fall too low if there's regression -- it's to be expected from the beginning. it's all perspective, right?

[quote name='JuliaFaith' timestamp='1291569077' post='94569' When I asked why so many kids with PANDAS have lyme, dr. said that most of us have lyme and when other health problems come about, "it rears its' ugly head." Have to go for now. Will come back on and post more on protocol when I get a chance. Take care. julia -- thanks for the update -- i'm very interested in what you can share from klinghardt visits -- are you actually seeing him or partners in his office? please let us know how your son is doing. i very much wonder this point of infections. how much of the population is proven to have EBVand other herpes viruses. it's generally accepted that most people carry many viruses/bacterias and for most, it's not problematic. . . but for those that it is, it's a big problem. i do think this is often the case. or the theory that a body can handle a certain level but too much tips it over. our dr told me he believes 'half of the people before you have lyme, whether they know it or not." we do live in an endemic state -- but still. i think i just read something that 90% of the cases autoposied with the type of tumor Sen Kennedy died of have abnormal levels of toxoplasma gondii in their system. perhaps many of us do. . . perhaps that's just coincidence . . . has anyone read the Stealth Infections book? i think that's the name.

this sounds as if i am disrespectful to teachers and i certainly am not . . . i just feel for this disorder, it's as if we're speaking Greek and they are understanding English. i think they want to understand but then just put what we say into their bag of experience and come out with what they've seen before. really -- how many pandas kids have you taught? okay -- sorry -- a little off topic. i think you're asking from an exposure standpoint - ? - i think the bottom line is -- we, as parents, are the ones making the decisions. i feel for your dd's teachers that they are looking at her as an 'average' kid and don't want her to fall behind academically and socially. however, there is no way for them to even begin to comprehend what you know. i say go with what you feel is right . . . and stick to it. don't let yourself be swayed by people who don't know what you do! as far as e's -- my ds is first grade -- often writes 7's and 3's backwards; mixed up the common letters long after he could read fluently. doesn't like to write b/c he can't do it appropriately. i think it's pandas related. as a sidenote -- he's also a h*## of a switch-hitter at age 6.

yes - that is a conundrum! the more you allow him out, the more that builds and makes it troublesome to get back yet, he is also sick and school is troublesome. my ds, now 6, presented with severe school phobia at age 4.5. it was troublesome the rest of that year and some of the following. of course, he is younger than your son, so academically things are different but many of the emotional/social issues for him and for you are similar. the most successful for us was when we made deals and plans -- kind of along the lines of ERP or phobia therapy. one day, we had a drs appt in the am, he refused school b/c it was different from normal. that day, we drove through the parking lot with the plan that the next time we were late, we'd walk into school but not stay, the next, he'd stay. of course, i never scheduled another am appt. for ERP, it probably would have been best to, but school was such a hotspot, i let it go. both of us felt good that we had a plan in place and weren't wildly having to cave to anxiety and refusal, rather than me being frustrated and him being upset and digging heels in stronger. but for us, the plans were very helpful. if he was involved in designing the plan, he'd usually abide by it. i think it sounds like you are going to have to take a step back from insisting on full-day normal school. can you discuss with him what he is willing to do? then perhaps, that's day one. the next day is one step beyond and then continue with a baby-step each day. anxietybc.com has some good worksheets to design these types of plans.

yes -- exactly!! what is it that it is doing?? we've been giving it -- just one dose works wonders -- for parties, events etc. it makes it much more enjoyable for all! but - it does make me wonder. yesterday, he was having trouble playing a game, so upset when things didn't go his way. i got him on tape after just talking about it was clearly upsetting. then gave motrin and played the game later. i planned on playing just an hour after -- wasn't until about 3 hours after but still fairly dramatic results. i just don't know -- is it brain inflammation, BBB tightening, something else -- what?! only neg is family we don't see that often just thinks i'm overreactive, crazy mom -- because they don't see what i'm talking about -- but that's okay, i'll just roll my eyes.

does anyone know if ibuprofen has other properties than anti-inflammatory?

ds, 6, has been gf/cf/egg free for almost 2 years. when pandas hit, one of the places we sought help was a naturopathic dr. she ran a blood IGG test. he was highly reactive (off the chart) for around 15 foods. we immediately changed them. we didn't test for celiac b/c he went off gluten b/f we could. after about a week w/o, i realized previously he had been refusing milk -- i kept putting his glass in the fridge and later dumping it. he said "i don't want to eat anything i'm allergic to" i think at that time, there was something that was troublesome and he felt a difference. we saw no remarkable changes digestively or behaviorally. he has had exacerbations and good times while eating this restricted diet. i keep him on it b/c i think every little bit to heal or at least not overload his immune system will help. but i do not believe for us, we see any difference in behaivor due to the diet.

i posted over on pandas but know many over here are proponents of probiotics too -- i was wondering about changing probiotics and it seems the more i look to research, the more i find. my son has been on 8 billion , which i had thought was pretty good until reading some of the doses on here. what about particular species and cultures? i believe he's what he's been taking (dr recommended) is generally thought to be good for balancing for immune health -- i can't remember the name but it's the exact same as pharmax, which he took previously. any help?

i was wondering about changing probiotics and it seems the more i look to research, the more i find. my son has been on 8 billion , which i had thought was pretty good until reading some of the doses on here. what about particular species and cultures? i believe he's what he's been taking (dr recommended) is generally thought to be good for balancing for immune health -- i can't remember the name but it's the exact same as pharmax, which he took previously. any help?

i've read past posts and for some reason, i just can't seem to get it. . . betonite clay should be taken 2 hours after abx or supps -- yes? is that 2 hours on either side? med -- 2 hours -- clay-- 2 hours -- med? is that right? all supps too? so, you need at least a 4 hour time frame between anything, right? does that go for eating as well? if you don't have that time between eating, does it absorb the nutrients in the food? is everyone who's doing it doing high doses like sfmom or is it effective in just the TBSP too? thanks!

again - much more eloquent!! yes, i agree. we need a vowel sound -- PITNeD - ?

in our situation, i don't believe pandas was an incorrect diagnosis so much as an incomplete one. ds had sudden onset, high titers, positive strep culture and initial 100% remission with keflex. fairly clear cut pandaSTREP. however, with relapse when off abx and downward spiral with some virus or something, we investigated further. thru a type of ART testing, integrative MD diagnosed multiple infections, including lyme, cytomegalovirus, toxoplasma gondii -- all with known neuropsych symptoms. i now consider him pitand - multiple causes. i don't believe he has neuropsych lyme -- i think his symtpoms are related to strep -- perhaps lyme and the others are the 'stealth' bacteria wrecking havoc but strep is also problematic and seems to cause the symptoms we see. i am so for dropping the "S" and working with a pitand model, then investigating all the possible causes and treating. and, unfortunately, there are many. okay -- so i just read Wendy's response which is so much more eloquent than mine -- i do believe we are on a similar path of beliefs wth: By eliminating the things that are creating the hyper-immune response the individual slowly becomes better

i know i should stay out of the science. . . i work in marketing. . . but. . . if a person were to have 'hidden' strep or intercellular strep or other infections that were inhibiting conquering the strep, then you begin to treat such, would that infected person then shed strep bacteria as to infect another? if the initail person had such, have they always been an infective source for others and it wouldn't make a difference when you begin attacking it? if someone had 'hidden' strep and cultures negative for strep can they still infect other people? any thoughts?

i know i should know but . . . my kids do show titer rise. . . can anyone explain to me what the difference is in the two types of titers? thanks.

i have heard that the bicillin shot is really, really painful. more painful than any other shot? or is it that shots are painful? if more than others, why?

without a change in protocol? are you saying he presents herx symptoms every two weeks? how long does it last? does he go back to baseline in between?