smartyjones

i'm sorry -- I can't give recommendations on a hospital and only bits of my brain on what I want to say -- hopefully someone will chime in -- I would suggest not saying 'PANDAS' wherever you go. it would likely be most successful if you discuss that you think he could be having a type of encephalitis . perhaps it is in the recent radiopandas talk with the author of brain on fire that the docs on this talk discuss they don't even really use 'pandas' with other docs - but say they believe they need an 'encephalitis workup' sorry -- I can't be more coherent -- just wanted to mention it to get it started -- maybe someone else will be more helpful

problem solving and social thinking do take focus and participation from the kid -- not a ton, but you do need some. I remember a book I read a while back -- When Labels Don't Fit - that had some helpful ideas. the fact is, his brain is working differently than what we generally expect from a kid and how we are used to dealing with people -- but, you still need some ideas of how to cope for yourself without losing your own mind. dcmom has some great ideas to help also -- she and I were discussing things on this forum - perhaps around Jan - spring of 2012. maybe you can search some posts from her around then and find some things - or pm her and ask for her discipline thoughts if she doesn't post. in exacerbation, it is helpful for me to think of him as younger - not so much to relax my expectations, but to treat him as such. such as time out like you would do for a 3 year old --- his brain is working as such, so i don't need to excuse the behavior, but more treat him in a way that works better for his brain. just some ideas of what seems to work for us. above all -- i believe in the medical help -- but also just so very much needed coping mechanisms to keep my sanity and better functioning of our entire household. yes, it is hard and unfair! i wish you luck.

would you consider working a problem solving model with him to devise a solution that works for all involved -- key phrase -- "that is a solution -- but we need a solution that works for everyone involved, that solution doesn't so much work for me." at a calm, neutral time -- sit down to discuss the problem step 1 -- define the problem -- it's interesting to see that not everyone even agrees on the problem or that there is a problem -- you strongly feel you have definitely made it known there is a problem -- he may honestly not even think it's that big of a deal step 2 -- define the common goal -- very interesting for us, ds often has a different goal than everyone else involved -- key point -- how could we possibly have a common solution if we have different goals step 3 -- devise ALL the possible solutions -- many are actually solutions -- not good ones, but solutions; not ones that work for everyone involved, but solutions -- ie. mom just needs to relax -- we write them all down but peg the ones that are not viable for all parties. try for 2-4 possible good ones for all involved; discuss why and how the bad ones are bad; in first doing this, we had to strongly state, "i'm not saying this is what we are going to do, i'm saying it is a possible solution." step 4 -- pick the solution to try FIRST step 5 -- try that solution step 6 -- evaluate -- continue with that solution, pick another one or back to the drawing board for more ideas for you, it may be that you spend time in define the problem and goal discussing calmly why this is such a problem -- it's against our rules, it makes other people feel bad, it damages our relationship, etc. then the solutions may be what you are going to do about it -- when you call me an idiot, you will lose X. I know you have done that before, but I've really been surprised at some of the good solutions ds comes up with and he's more likely to stick with it if he's come up with it or has agreed to it beforehand. possible, "when you feel so angry and frustrated you want to call me an idiot, you can do X instead." both my kids interrupt each other and me -- we have a plan to use the sign language "d" for 'don't interrupt'. granted, it's hard to remember to do it -- but it's much more successful and generates much nicer feelings than the other frustrated responses. they do it b/c they don't want to forget what they have to say -- we've also used a notebook to write it -- again, harder to use -- not so successful on the fly -- but saves yelling and arguing. we have also gotten some great help from social thinking -- it's a whole program you can google -- many books etc. simple but just puts it into terms kids easily get and like and can remember. also -- my nephew's teacher once tallied the times she was interrupted in a 50 min class -- something ridiculous like well over 100. when she sat down with him and calmly, rationally discussed how could she possibly get through her lesson plan being interrupted every 20 seconds and he was the second highest offender -- he was stunned he had done that. it was far more successful in getting him to work on it than all the other yelling, reminding, punishing etc. he interrupts with useful, on target comments -- so he didn't even make the connection that it is still interrupting, even if's its correct and on task. good luck.

grace -- I don't have personal experience with specifically an ART practitioner -- however, I have read and seen web lectures of Klinghardt. we do see an integrative MD who uses something kinda/sorta like ART. I would ask you what your thoughts are on acupuncture. I consider the energy "manipulation" to be of this type. if that is okay with you, you'd likely be okay with what you're thinking of pursuing; if not, perhaps not. also, i'd ask you what you are thinking to do with the information you receive -- it would likely guide a path of supplements, diet, perhaps traditional meds -- would you think to follow it to the letter, pick and choose or say no thanks -- that may also help guide your decision on going in the first place. we do not see dr o. however, I did see her speak at a recent TACA meeting and found her very interesting. she is a rather traditional doc -- however, she does have a practitioner that has some type of relationship with or refers people to - she has a link on her website and she did mention it at this lecture -- that has a very good website that has good explanations of this type of medicine that you may find helpful. you can look at the website at http://cornerstoneintegrativecare.com/ good luck in your decisions.

Julia -- I just saw on your tag line you love this honey. I have heard of it but not really specifics. our local natural food store has trouble keeping it in -- they seem to rave about it but it's never in when I go there. I use raw honey for sore throats and coughs and like it better than over the counter stuff. what are you using it for? used it for skin abrasions? thanks.

a long time ago, in the beginning of pandas onset, we saw a naturopathic doctor. she once told me that early in her practice, she ran a lot of tests and it was great to have lots of data. now, she only runs tests that will influence how she will treat the patient. so -- what do you plan to do with the results? that's what i'd suggest to guide your decision. think about really what you will do if you get a positive or negative response. try not to have the fear guide you -- but the reality of what you would do. just fyi - we have never done Cunningham test. I would love to see what it shows. ds had onset 4.5 years ago. he had high titers, positive throat culture and 100% remission with abx. at the time, I didn't feel it would show me anything I didn't already know. we do have doc's letters with pandas diagnosis for school. I don't know what more we have to gain from it -- but i'd still LOVE to see what it shows! especially if we could do it in remission and exacerbation. just have to be more prudent with our $ -- perhaps when I win the lottery.

my older ds, much less PANDAS symptoms, is 11.5 - entering middle school Sept. PANDAS ds is 9, entering 4th next year. I went to a great seminar yesterday on the adolescent brain and high risk behaviors, why that brain is so vulnerable. curious for thoughts, ideas, stories, etc from those with teens in remission on what you may have done differently and/or the same when working with kids in preparing them for peer pressures and experimentations for drinking, drugs, sex etc of the teen years. I have much more concerns for younger ds -- much more vulnerable from many angles -- stronger vulnerable PANDAS brain, 2E learning issues and basic personality -- but I feel I need to figure out how to appropriately work with older ds in fighting my own urge to use his social anxiety issues to keep him safe. I've worked hard to help him fight his sense to keep in his shell in some situations and now feel I'd rather have him in that shell at times as a teen - . thanks!

tiny -- I have not read all of the posts - but am certainly happy to see you are getting good support here! I, like everyone else, agree -- 3.5 is way too young for that diagnosis. for us, one of the reasons we were able to get a pandas diagnosis relatively quickly - about 2-3 month, 4 years ago, which was pretty amazing back then -- was b/c of one savvy behavioral therapist, who said, "what you're describing sounds like OCD, but he's awfully young." he was 4.5 and it was his age, not so much his behaviors or even that it was sudden onset that made her think to look further. we do see an integrative MD who treats with homeopathy. I was somewhat familiar with homeopathy and had used it for myself and my kids previously -- of course, not to the level we then did for pandas. we use something more of a 'sequential' approach and/or "homotoxicology" in that we use the remedies to treat conditions as you would other meds, such as abx. the more common approach is "classical" where a constitutional remedy is used. as with everything, there are disagreements between approaches. we have had very good success and I believe my ds is at a very good level of health.

my dad had open heart surgery last year -- obviously different causes -- he did very well in the surgery at age 75 and did very well with recovery. I see the same for your son!!

isad -- if you were interested, you could check out the wesite of dr. ross greene, of the explosive child -- it's livesinthebalance.org some people get frustrated in the book when they don't think it is so helpful -- I am such a huge fan of it, not so much for causing changes in my ds (although I do think it was helpful for that) but more so in giving me tips and techniques on how to work and interact with him when he was being difficult. it helped me to be involved with him but not be dragged into the drama of the tantrum/problem. that's really a good first step -- to remain objective so as to help find a solution. once you're objective, you can work on ways to help draw out information -- sometimes that she doesn't even realize herself. briefly -- if she says she feels left out and hates everyone -- what is your normal interaction with her then? in this technique, you would as nonemotionally as possible say, "you're left out?" it's best in the beginning to be as brief as possible. with things like, "you do", "really?" , "I see", "I guess I would too" be aware some people worry that it will upset the kids more -- my ds never seem to notice what I am doing. however, his very inept previous vice principal didn't know how to do this correctly and angered him. try not to add much, offer suggestions, offer better ways to feel or act -- just repeat what she has said. you're trying to get her thinking and talking. as you do it more, you can add humor, surprise, amazement. it's very helpful. recently, ds brought up his fear of tornados from the past -- his news magazine was highlighting tornadoes the same week of the tragedy. the front cover stated the US has the most tornados of any country. when going to bed, he said, "I don't even want to live in this country". I stated in amazement, with a little edge of humor, "ds's not going to live in this county!!" it turned into a funny joke with him, me and his brother and he relaxed about it b/c he realized it sounded silly when he heard it out loud from me that seemed different from how it made perfect sense in his own mind. granted -- he is in a very healthy state -- but this could easily have turned into him worrying about that event happening in our town. good luck!

EAmom -- wow!! Many girls don't get an elevated ASO (even with positive cultures): http://www.latitudes...?showtopic=9495 "Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness Whereas 54% of boys had elevated ASO or Anti-DNAseB" do you have any thoughts on why that would be?

just to mention, I agree with dcmom and arial. my ds has only really shown 'typical' ocd symptoms in pretty extreme exacerbation. he tends toward anxiety and his ocd is of the 'just right' type. in this, it is hard to discern what the problem is or how it is ocd -- for us and for him -- he really can't explain it and may not even know -- it's just not right -- and this can result in behavioral issues. we worked out a good system where I would ask him, "do you know what the problem is, do you not know, or do you not want to say?" more often than not, it was, "it just is." "not want to say" was extreme ocd -- I think of the frightening type to him -- luckily we didn't hear that much at all. I would wonder at age 6.5 if the school complaining could have a real basis in trouble. just from our experience, so may not be your issue at all, ds had trouble has trouble with writing -- composing and the physical act of writing. 1st grade he was homeschooled and I did much scribing for him. 2nd grade, they thought it was a power struggle issue -- upon testing, he is a classic 2E kid with much lower working memory skills than other -- meaning, by the time he finishing the first word, he has forgotten the sentence or even what is was about. this caused EXTREME stress for him in school -- especially at 'journal' time. may not be, but could be that she is experiencing something that is a real problem at school that she needs help with. we worked out a great problem solving system with ds based on the 6 steps of problem solving. we found he often has a different 'goal' than everyone else involved. of course, it's hard to reach an agreeable solution, if you have a different goal. this info is invaluable to cooperative problem solving. lastly, I LOVE the book, The Explosive Child. the repeating technique is great to glean info about what a child is thinking.

i recently saw dr o speak at a TACA conference, specifically about pandas. if you haven't, you can google her and see some excerpts from lectures she has done in the past. that could help you get a feel for her.

natural -- are you aware that your behavior list reads like a pandas symptom list? also, are you aware that what is commonly referred to as PANDAS has many more causes than solely strep? PANS -- is the name used for other etiologies. i'm not so sure that many/most/all 'mental illness' does not have root in infectious cause. so - perhaps the mental illness you refer to in your family trees is shared sensitivities to infections or other body systems gone awry. perhaps what you refer to as her "always" neurological issues has been due to this type of trouble. perhaps not -- but if it's something you feel you should investigate, then i'd say you should. i appreciate your desire to treat her with natural supplements -- we see an integrative MD who treats with homeopathy. my ds is doing very well on this path. there are many of us who have done so. i believe getting to the root of the issue(s) is imperative. please research and discover more about PANS and those pandas patients that did not show titers or cultures,yet saw results with treatments. when my ds was first diagnosed, he was put on a 5 day course of azith. ( he has allergies to penicillins) it was disastrous. our then useless ped stated, "i think you'll find the behaviors and the strep are not related." he had titers of 898 and a positive culture, sudden classic behaviors. we switched peds. the new one put him on 30 days of keflex, did a sinus CT which showed all 6 cavities infected. he showed 100% remission in about 3 days. unfortunately, it didn't last. he backslide about 30 days off abx. we then kept searching for answers -- found many other infections. most of us here would not think 5 days is nearly enough to eradicate the type of strep we have dealt with. my ds had a confirmed strep infection 2.5 years prior to pandas onset. i highly suspect he never kicked that initial infection. you did see a change after 5 days on the abx. i don't know that your dd does have pans or doesn't, but i'd advise to not back off the thought of infectious etiology until you feel it's correct to do so. good luck!

I know there were a few people who were seeing an integrative doc in Denver with their kids. does this doc also see adults and for various conditions? pancreatic cancer? can someone who sees/knows of this doc respond or PM me the info? thanks.

so sorry to hear you are experiencing an exacerbation after healthy times. unfortunately, i know how heartbreaking that is. first, i am a firm believer in the infectious root of much. we found multiple infections for my ds -- after having clear strep ties, high titers, active positive strep culture, 100% remission on the right abx -- it just didn't last, so we went looking for other infections, and found plenty. i am also a firm believer in the need for coping skills and plans. when i read your post, i am reminded one of ds's last exacerbations in fall of 2011. (age 7 at that time) i discussed this much and got much helpful advice from many here, specifically dcmom. perhaps you could try to search my posts or hers from that time. this was not initially onset, nor worst exacerbation. it was after 3 years after onset, we had some good plans in place, but still needed good strategies to add. i wondered if you are holding your daughter to previous expectations. i'm not talking about relaxing expectations, but more of tightening the boundaries of expectations. we found this helpful for my son when in exacerbation -- kind of giving him a small corral which to operate in. in this way, we weren't so frustrated with him breaking rules, etc while we got our ducks in a row. and we still had expectations rather than just giving in even if they weren't the normal expectations. i'm not really explaining it well -- perhaps this analogy can help -- my kids went to montessori preschool. often, montessori is seen as just allowing the kids free choice to do whatever they want. it's not that at all -- it's actually quite restricted. the kids are allowed free will among a set group of choices. traditional school is more like reigning in kids to rules in a broad environment, montessori is allowing choices in a restricted environment. perhaps if you think she can't control it - try to give her something to control - such as going to the basement and yelling and throwing things after the one warning, rather than the one warning to stop. maybe you could devise some things that make sense for you that would make you not feel so bad and questioning things and she would not be digging herself into further holes and getting into worse patterns. we also added a problem solving model at this time that when he would get upset, we would suggest problem solving. we then worked through the 6 steps with/for him. it was actually beautifully based on baseball (good psychs suggestion). his only job was to 'stay at the plate' - remain wtih us for it. most of the time, for him, he wasn't freaking out for no reason -- there was a reason, it just wasn't apparent to anyone but him. when we got to it, 99% of the time, it was reasonable -- it was his reaction that wasn't. when we found solutions, he could usually roll with it. good luck.

tpotter -- sorry to hear this. even more sorry that i have no where to refer you. just wanted to say that i am with you in your quest to discover this important information. i think you are very much on the right track in working to discover this and unfortunately, you are simply ahead of the medical knowledge/concern at this time. what does your ART doc and LLMD say? 2 years ago, my ds11 had labored breathing during sports. our ped tried to be thorough -- he blew very low on the tube thing, had low pulsox - chest X-ray was clear, blood tests showed nothing, EKG showed small blip, doppler cardiograph showed small heart murmur. diagnosis -- exercise induced asthma, likely inhaler for rest of life. integrative MD found lyme, bartonella, babesia, myco, strep. now he is doing great with no inhaler. mostly keeps up with kids his age. i know not nearly as serious as what you are facing -- but, just to tell you i very much think you are right to follow this and make sure a new valve will not suffer. good luck in finding the correct info.

i am a huge advocate of the book The Explosive Child by Dr. Ross Greene. You likely don't have too much time to read a book right now -- but that book jumped off the shelf into my hands one day right when i needed it after a particularly troublesome day with ds opening the car door while i was driving. Dr. Greene has a website www.livesinthebalance.com that may offer some quicker help. you may want to search the forum for some help from dcmom -- i don't know that i have a good keyword b/c she has a lot of posts -- but she has some gems about keeping order in the house during troublesome times. good luck.

did anyone ever meet up? does anyone want to?

i certainly don't want to scare you unneccessarily. . . but, i have just become aware that there is a type of seizure that presents as laughter. i don't have time now for details, but perhaps you can google and see if this is anything of what you are experiencing. good luck.

dcmom -- makes me feel a little better -- ds11 has overbite but his top teeth are beautifully straight and you don't see the bottom - so maybe not so bad just to fix the bite. . . i hope! EAmom -- sounds like it was a little while ago, but can you give me any thoughts on the extractions -- like where in health was your daughter and if they did twilight sleep or knocked her out. do you have any thoughts or advice that you can give about how/if that affected her pandas health? i don't want to do anethesia, but i worry that if we do it under something lighter, it will trigger too many anxiety issues and the whole thing will be a no-go -- and then we've got to regroup and start again only with a bad experience added to it. on the other hand, i worry the anethesia will trigger an exacerbation. still hoping the integrative guy has another plan. actually - he does but also admits it may come to extraction -- just has a few things to try first. thanks.

YIKES -- my trusted advisors of dcmom and MOMwithOCD are freakin' me out! you're a bit above my high estimate. we've consulted a traditional ortho who wants to wait -- except for this surgery they want for younger ds. i'm waiting to get the estimate from an integrative ortho. so, i'll have one estimate but not the other to compare it to. i'm not sure any of us can add another to the mix -- after 2 orthos and 2 oral surgeon consults. i was hoping for more in the $4-5k range. our insurance offers $750. thanks all!!

so i read what MOMwithOCD wrote -- perhaps she has a good clue in there -- how does the child present when at a good level of health -- if you have seen such a thing. my ds has many inattentive, fidgity, swinging, etc behaviors that are ADHD when in exacerbation or even lesser sense of health, that i do not think of part of his normal make-up. these go away with better health. the writing issues are always present. and it is enough, in a not proper environment, to fuel school refusal.

Mama – in our experience, I say absolutely! And i do beleive middle school is a very common time for issues to surface that haven't previosuly -- both anxiety and learning issues b/c of the increased work and often with ADHD b/c of the increased independent responsibility to do work rather than in elementary where it is quite regulated. I’ll try to be brief, but I say to anyone considering ADHD with a kid with pandas, it may also be good to check into 2E, depending on your child’s issues. A number of years ago, right here on this forum and forever grateful to EAmom, I was stating something about my ds’s apparent high ‘puzzle mind’ with also inattentiveness (or something), EAmom threw out he could be 2E. Years later and through testing, he is a classic 2E situation. In our disastrous year last year, school officials sneered and shook this head at his ‘manipulative’ style. This year, I can hand them one paper and anyone with basic education experience, has their jaw drop and their eyes bug out as they sadly say, ‘no wonder school is a challenge for this kid’. He has wide discrepancies in 2 areas of cognitive testing – and those ‘low’ areas are actually in the average range. He had sudden onset at age 4.5 and fall of 2nd year in preschool. Of course, we didn’t know what was happening and one day, I said I couldn’t allow him to go to school with such bad manners of fighting the teachers to get there (physically). As we were driving home, this sweet introspective voice from the back of the car said, “Mama, I don’t remember why I don’t like school.” I believe his initial school refusal and phobia was brain-PANDAS related with anxiety issues. As things went on, he had handwriting issues, but he was so young, we didn’t see clear patterns or realize it. His teacher had marveled at his good handwriting previously and saw his refusal as obstinacy. This became a big point of contention the rest of the year and the next. This helped to solidify his dislike and refusal of writing and continued to feed a vortex for a few years that he is just now breaking out of as we are trying to unravel his written expression issues. He did just mention to me last night that he doesn’t like writing because it makes his hand hurt and it gets so tired. We’ll never really know if he would have had these discrepancies anyway or if they have been brought about from PANDAS. This year, he is in a very good charter school with a great staff that suits him wonderfully. Last year, when the class was expected to get out their writing journals and write on a specific topic and he would just run his pencil over the binding repeatedly and it was seen as obnoxious, we were in a bad spot. And that’s only the writing that I am mentioning – which is pretty much the biggest issue, but there are others. And likely ones I’m not even aware of and perhaps he’s not even aware of. Now, I pretty much see it that he’s had 2 big strikes against him – pandas and learning/attention issues. I think the biggest way to help is with understanding where he is coming from. And that understanding must also include the realization that the world isn’t going to be so understanding, so my job is to best help him figure out ways to adjust and adapt to the world, rather than trying to get the world to adapt to him. So, I see we need to make accommodations for him now to help him learn to adjust himself so that he can make the accommodations he needs for himself rather than wanting or needing them made for him. That’s what I like to think my philosophy is anyway – tougher to live. But, it all starts with knowing what you’re up against. It’s so easy to think something is one way and it may not be that way at all. So, I wasn’t so brief, but yes, I think if you are thinking this could be something, it’s something to investigate!

as i am really working trying to avoid oral surgery and anethesia for ds, i'm curious for those of you with orthodontia, i know it's impossible to really have an 'average' case, but what would you say is an average price for orthodontia? thanks.