smartyjones

i think deciphering/determining the herx vs. exacerbation is a very difficult task. i am being treated for bartonella, babesia, lyme since Aug. at first, i felt no different. major symptom most likely irritability. although i can piece together much from the past few years.. after 2 mths, no real change. then a change in med, much less irritablity. then next month, massive migraines - with aura - i have visual disturbances with it (i had them as a teen, went away, came back after pregnancy). during mth 3 &4, having often and quite bad. then i got a bartonella rash on my upper leg. dr thinks migraines are likely related to TBI. so -- just my opinion based on my personal experience -- i do believe herx can come out later in treatment vs. having to be right in the beginning of it. the things you describe are upsetting events, so to me, it doesn't sound like your son is simply being defiant but rather inappropriate overreactions which is very much a symptom of PITAND. can you reframe it for your husband as that rather than defiance or brattyness? perhaps you can find some info in the pinned threads or dr. k's website or dr. c's research that talks about cam-kinase and it's involvement in fight/flight/freeze mechanism. perhaps your dh would be accepting of terms being it's that mechanism that's being triggered rather than an active choice on ds's part - ?

i have not seen him as a patient but i attended a lecture he did on lyme. i very much liked him and felt he was certainly above board. he answered my personal questions both during the lecture and after. he did discuss the aspect of multiple infections causing trouble. one of the things that stuck with me that he said was to the effect of. . . okay, so many people say it's not lyme, fine -- then WHAT is it that is causing these people's ill health -- find out and treat it! we are on a more alternative treatment path, but i have him as my plan B if we needed to change from that path. i'm sure others with more experience will chime in.

i think yes, vey much so. my ds was 41/2 at onset and he did this type of thing to an extreme! first, he took azith which was horrible. we got him on keflex and all that behavior stopped. so, yes, i very much believe that's a pandas symptom.

unfortunately, i think it can really vary. my ds had a herx-like reaction to an anti-viral. he had classic, textbook contamination OCD that resulted in not eating. he got just enough fluid each day to keep him from an ER visit to hydrate. he'd never had this before. our dr theorizes that this may have manifested sometime in the future if we weren't treating him. his issues are more oppositional defiant and "just right" OCD. his exacerbations have been more 'more of the same' type behaviors. it came on about 2 weeks-ish after the introduction of the med and lasted in extreme about 7 days. although, he had reduced eating for a few days prior and a week or so after. in retrospect, it was so wierd how it happened b/c it came on as if from nowhere and left almost the same. i see now that there were little signs for those 2 weeks that we just didn't recognize. he didn't begin eating again from really anything that we did -- he just became more accepting of food and not worried about the contamination. are you in good touch with your dr or the office? i really needed their reassurance at the time. good luck.

oh please do!! awesome scoop so far! at first, i was wondering if you were talking about Singer. i'm curious and you're in DC area, right? can you PM the dr?

i agree with all this from formedbrds. for us, we're homeschooling b/c we are trying to sell our house and they weren't going back to the same private school (for pandas reasons) but so we were trying to avoid too many transitions - so, many issues involved to make it not such the best situation. we really thought it would be just a few month solution but has become longer. i don't think i've seen so many discussions about school lately -- have you tried doing a search with the word 'school'? it may bring you to some past discussions that may help. we've had severe school phobia and then trouble at school with refusal to do things. he was in a private school that didn't reallly have the resources and basically teacher ran out of patience. i think in many situations, it is better to not have that added pressure for the child and the parent. however, it is a slippery slope that you've got to be sure that you are not starting other habits/patterns that are also troublesome and that you are in charge and making good decisions rather than being backed into corners. in the end, i say trust your gut to do what's right. really, school is supposed to be an enriching situation of helping the child to grow. if that's not happening, it may be best to not be there at this time. i think you'll know when it's right and when it's not. just be sure, you are in control of making the decisions rather than having her and you cowtowing to the OCD - it's easy to let it be in charge.

i have to say mom, that surprises me! have i been ascribing your ds's scientific mind to you?

for a while, my ds was going to a cranial sacral therapist. it is a touch type of therapy. he did like it and "allowed" it, which surprised me at first. the first time, he sat on my lap. at a mid-point, he let off an unbelievable amount of heat. it was as if someone put a huge pot of boiling water in my lap -- very bizarre. there were times when i thought it made a difference for him. one time, the next day, i was picking him up from school and saw him from afar and just felt his general 'aura' and face looked lighter and brighter. i do plan on picking it up again in the future. we stopped when we went to our current integrative MD and started treating multiple infections -- had previously just been treating strep. would be good to do all but have to juggle $. i'd have to say i think multiple therapies can be very helpful in managing symptoms but my real belief in healing come from treating the infections. keep us posted on results if you do it.

oh mom - you are so wise. we've had trouble with time before so it is not a good counter for us -- 'things' are much better. why didn't i remember that? thank you. on friday, we did one bite for breakfast. quite a bit of crying. at lunch, we did two bites -- much crying, was mad at me all lunch. but, there was much crying before so at least this is crying with a purpose. unfortunately, the weekend is a different schedule -- basketball, lunch out etc. -- so it didn't really apply. monday, he "allowed" one bite. then visit to nana's -- again, different schedule. today, wasn't even an issue. brother came to breakfast and started eating before. ds didn't even care. we'll see what lunch has in store. had dr visit on monday. seems CMV is active again. this issue hasn't been strong again until last week. wonder if it was that showing. guess we'll see what treatment shows. thanks for the tips -- always good to have something handy in the tool belt!! \ vickie -- it's that pandas son needs to begin eating at same time as brother -- after first bite, there's not a problem.

i know not what you're asking and it's winter but. . . make sure he watches the sun when on doxy -- even a very small amount of exposure can fry you!!

adkmom - first -- glad to hear your seeing results -- enjoy them!! just our story -- my son presented with sudden onset at age 4 and a half. he first was on a quick 5 days of azith which were terrible. he then was on 30 days of keflex -- a cephalosporin -- same family as omnicef , i think-- ?. he had 100% remission in about 3 days. he later relapsed after being off the abx for about 30 days. he went back on but not to such dramatic results. he downspiraled after a virus a few months later and had a long time getting back. we then invesstigated other infections b/c he wasn't fully healing -- lyme was one of them. i really don't have much to back it up but here's my thoughts -- i think he had lyme and a few other infections that were more of a 'stealth' nature -- possibly affecting his system but not with notable results. the behaviors that we saw were due to the actions of strep. i think the keflex took care of the strep and thus, the remission. however, those other infections were still there. possibly then, we saw some effects -- perhpas they weren't allowing him to fully kick the strep, perhpas they were 'activated' themselves. could it also be that those infections exist within him without causing active trouble and the troublesome one has always been strep? like many do for many people -- something like 95% of the population have EBV when they reach adulthood, right? for some, it can be an active problem, for most, it's not. i don't know but we're treating them all. so yes, i think your son could still have other infections and you could still be seeing stellar results. you're seeing dr B soon right? so you should be in good hands.

kara -- when i read the first part of this post of yours - i hadn't realized the pain was in the armpits and the first thing i thought was lymph glands -- then i saw you had thought that too! i myselt have had lymph pain and slight swelling in the armpits. i think i remember it to be a strange feeling. i'd vote as something to definitely invesigate.

S&S -- have you heard of/read the book The Explosive Child? i've found it very helpful when my son has had an outburst -- i don't so much call it "rage" for him b/c it doesn't often have an angry component -- upset and out of control -- it's the same mechansim though. that book practically jumped off the shelf at me in the library one day after a terrible day leaving my mom's with him opening the car door as we were driving down the street -- me pulling over, taking him out and holding him in a body wrap while a postman looked on wondering whether to call the police. you could try to google to give you an idea -- i don't so much recommend it as a way to help her get a hold of herself kind of like the book suggests. i recommend it as a way to help you better interact with her while she is in a rage. it gives you something to do rather than just react. i felt it gave me a way to be involved with him in a helpful way instead of being dragged into the rage with him. basically, you begin by repeating what she is saying. she "she had this and i don't", you "you don't?" then stop - don't say anything until she does and then repeat again what she has said. she "she got into the car first." you "she did?" then throw in a question when to help reach a solution. "why is that a problem?" if something like, "because i deserve to get it first. you "you deserve it." try to be emotionless at first. now, i usually do it as a question and then he calms down as he answers yes in kind of an indignant way. she"you're rude", you "i'm rude?" i've found it helps to keep everything from escalating. for my son, sometimes it's been enough just for him to have me repeat it and i think he kind of thinks i'm agreeing with him and will stop. other times, it's thrown it back to him that what he is saying doesn't make sense and then he reevaluates. there are also times that it doesn't really work. i just found it to help so i had something to do that wasn't just making things worse. my mom's friend started doing it with her difficult husband and found it helpful. if you feel that something is really inappropriate, you can bring it up to discuss LATER. at the time of the rage, she's not going to get anything in the form of a lesson anyway.

hi tracie -- i have two boys, 6 and 9, and 6 yo has pitand. so, some relevance but maybe some can be due to an only child that i don't understand or perhaps, girl v. boy. i'd have to say, in my opinion, i'd lean toward what you are describing as pandas symptoms rather than just 'normal' childhood. i will disclaim that i heavily lean that way generally. was she behaving in this manner during the 8 mths you thought were so good? i'd think that would be a big clue.

from my memory from the OCD conferenece in July -- so 6 months ago -- i probably have it in notes if something is off. Dr. L discussed that people have an internal and an external sphincter in their bladder. the internal just works to keep the bladder closed and it fills all day whenever urine flows into it. you don't feel it, it just works. when the bladder si full, you feel pressure on the external sphincter and therefore, have to go. i don't recall that she gave the exact reason -- perhaps not known, perhaps controlled by the basal ganglia -- for these kids, they lose function of their internal sphincter -- therefore, whenever urine flows into the bladder -- which is conceivably all day long -- they feel as if they have to go b/c they don't have the internal working and just feel pressure on the external, just like when things are normal and you have the urge to go. so even if it's a small amount, it's not working properly to allow the bladder to fill up. i guess it would also stand to reason that if you only had one working flow regulator instead of two, you'd have less control as well and wouldn't be able to hold it.

so yet again -- i'm up for mother of the year for yelling at ds when i know it's not his fault. . . anyway -- he's doing quite well and this is relatively mild compared to in the past but something i think we should deal with. i believe he has an OCD issue with doing things at the same time as his brother in an effort to keep his brother safe. from what, i am not sure, but some sort of harm. a year ago, this was intense with tantrums in the morning about getting dressed at the same time -- i'm talking exact, such as putting legs into pants at precisely the same time. i had wondered if it's a type of separation anxiety but i really think it's some OCD control. it's has also in the past taken the form of going to the bathroom at the same time. about a year ago, he'd delay coming to dinner and then freak out that no one start without him. i think it's all related. presently, he needs to have brother wait to start eating lunch. he will yell and freak out about it. an unskilled eye watching it would think it was bratty controlling behavior just to be in charge. someone who knows OCD would know it's OCD controlling behavior. he may just politiely ask brother to wait for him to finish in the bathroom and then come to lunch. it becomes problematic if he doesn't come to lunch at same time as brother and then he freaks that brother has to wait to eat. today, i asked about reasons vs. no reasons, keeping him safe vs. just because. he said it is to keep him safe but from what is "a secret". he doesn't do it with me b/c i don't start eating before him. if i did, he'd have to have me wait. we have done ERP-like for some other issues with success but he is a not so willing participant. i devise steps and he complies with the step of the day. he doesn't want to think about or hear any farther reaching ideas than that one action. rewards don't work to induce participation -- they are just a happy sidenote. i'm thinking i should start something like having him sit with me for 30 seconds while brother begins and increase the time of brother beginning without him. ideas or thoughts? thanks!

i don't know -- that time i came in the summer, we were bordering on driving home late even meeting at 11:30. i think i just didn't want to leave you guys!

forjpj -- were you thinking the 22nd? were you doing a certain Saturday? i'm kind of thinking potomac mills seems best -- how far is that for everyone? i don't know that i want to go much further south but if you guys came north, i can really only think of like bethesda just to avoid being in the city and that would be quite far for you. what do you think? it probably has to be just north or just south of the city -- ?

yes -- walking the line btwn alternative and traditional medicine can be tricky. i am satisfied with the ART results and plan to treat according to suggestions of integrative MD. however, i am curious what blood tests would show and what the options would be based on them in a traditional sense. a couple of years ago, a dr told me she only runs tests if it will influence how she treats. i think this is good advice. however, i'm not so much using it to guide treatment as to discover options-- so i'm aware of the possible paths to make good choices. i wasn't going to pursue it too much -- no ignenex due to $ -- but did ask my ped to order tests. i am not using him for pandas treatment for younger son but do have him involved on the "team" b/c although he doesn't really know how to treat, he is open-minded and gives a certain perspective. unfortunately, he is semi-retired and i really do need to speak directly with him instead of others in the practice. so, while it had been 12 days and a few nudging calls, it was really only was a few days in his sense to get back to me. he's ordering a lab corp western blot and co-infections so we'll see what that shows.

cobbie -- how is he with puzzles and the like? my ds has always had an amazing puzzle mind. he's a little younger, but when he seems to have trouble focusing on other things, he can sometimes get lost in a puzzle or a puzzle game. we have many of the ThinkFun ones -- do you know them? mosaic coloring and pattern type things tend to be helpful also. also paper folding -- we have a airplane folding calendar -- drives dh crazy if he comes home and planes ALL OVER the house. i say hey -- he's been at it for an hour!! you might be able to find some on the internet. if you want, i think could find some pattern designs for you for coloring. also, he tends to respond fairly well when i make deals -- he'll want me to watch him do the puzzle -- i'll watch for 5 minutes, then come back in 15. something like that -- maybe -- ?

wow LLM -- i love that. it so hits it! i'd love to see that pinned somewhere -- but, unfortunately, it may be one of those things that you can't really understand properly until you've lived it. you should keep that for speaking that you do!!

yes, my ds did turn around quickly when we got him on the right abx. he was on azith for 5 days and had a horrible time. we switched peds, put him on 30 days of keflex and in about 3 days he had 100% remission. so, yes, i believe it can happen that quickly. i don't want to discourage you -- only hoping to help with my experience -- i'd like to caution you to have cautious optimism. the results can happen quickly, but there can also be relapses. like i said, my ds had 100% remission. then, about 30 days after the end of the abx, he backslide. i was completely devastated and totally unprepared to deal with that -- i thought he was cured. i didn't know about this forum and this was about 2 years ago -- which seems light years ago in terms of info and what's out with support/info/organizations now. (i can't imagine those that were here 5 years ago!) i'd suggest you research and learn what you can, make plans B and C just in case you need them. hopefully, you won't. i do believe there have many more than a few cases of quickly catching things and having good success with abx. however, you'll just be prepared.

are you in the northern VA group still meeting? anyone up for meeting in DC/northern VA area?

sorry - double post

thank you christianmom for these words that i pulled from another post: He compared my son's results to a yeast infection. In other words, you treat one bacterial infection--say bronchitis for example--and you get a yeast infection as a result. The yeast infection was there all along, but was not causing you problems. But when you tried to treat bronchitis, the yeast (another bacterial infection) tried to fight the antibiotic so it could live so it become more active than ever. So in other words, the mycoplasma was there, but it wasn't detectable until my son was put on an antiobitic for the group a strep. i find this very interesting and is in line with the theory that we are treating multiple infections in my son. he had quite classic pandas presentation, minus tics, yet had many infections. i think they all come into play somehow but am not sure how -- like that a large % of the population has EBV anyway. we see an integrative MD who believes that maybe some infections aren't presenting strongly but if you clear one, another may come more into light and should be dealt with as well. christianmom -- your statement seems to indicate in that example that the yeast wasn't so much caused by the abx (which can certainly happen) but was present all along. perhaps these bacterias and viruses live in us upgrading and downgrading all the time -- causing trouble and not? any thoughts?