smartyjones

who the H*** is "whizzing along"?! I do care about Singer -- we were referred to him a year ago! They need to be on the bandwagon, not dragging it down like they now are. only due in a large part to this forum was i able to discern what to do. what if i had gone to him as one of the leading experts in the field and had actually BELIEVED him and followed his advice and been referred back to our psychologist only??? for at least 6 months after and still to a lesser degree, i've felt the extensive reach of the long arm of the esteemed JHU in influencing drs. in my area. I was personally struck by the compassion and caring of the dr's that spoke. yes, each has their idea of what's right and it's frustrating that they don't agree. but i felt they think - holy sh**, what's happening here and we've got to get a handle on it. i went to hear dr k and his experience. and that's what i got -- his experience. i like that he speaks with confident authority. i don't have to take his word as the final truth but i wanted to hear what he has found with how he treats. i was especially struck by Dr. Leckman. he seemed to me almost ego-less and taking our stories personally and doing what's in his power to try to figure out what the h*** to do. beginning with having the experts reach some sort of consensus or at least, meet and discuss what they're finding and what they may have in common!

just from my impressions on this . . . i believe it was in Dr. Leckman's talk that Dr. Murphy was in the audience for. he seemed to have just noticed her in the audience and drew attention to her. she seemed a little reluctant to speak in that setting. i believe he asked her when/if she orders IVIG and she stated she had never prescribed it. that she works with abx only. there wasn't more elaboration than that in the presentation. perhaps someone else had a more in-depth conversation with her.

i think this is an important point due to our personal story. we sought help from a behavioral therapist. she was running through her list of "disorders" and he seemed to disprove whatever she was thinking just after she thought it. she said, and it's in my list of quotes i will never forget of the good and bad that was said to me, "what you're describing sounds like OCD but he's awfully young for that". he was 4 1/2. with her suggestion, we found ASO of 898 and positive throat culture. NO ONE else we were consulting was thinking anywhere near here -- ped and "behavioral specialist" ped. without her, I truly believe we would have been on the OCD/ODD train of trying to treat him behaviorally for YEARS!

jill -- not sure if what i have to say is appropriate, but just remembered when reading your post. my ds, 6, presented with symptoms about 20 months ago. he had separation anxiety with school during nov. halloween day, i remember him freaking out about losing a rock, that he'd just found, in a parking lot and was upset about it for 1/2 hour after. never been attached to something like that before. that night, he fell down some stairs while trick or treating, i seriously thought he broke his arm, he was freaking out so bad. i can't remember details now, but i think he had been scratching ears a few days before and i had my dad (a dr) look in his ears but they looked okay. i had taken him to the ped the day before halloween b/c he had woken up in middle of the night with severe ear pain. he seemed okay in the am. when i took him to dr, said not infected. in dec, he had high titers and positive throat culture. i'd kind of forgotten about that b/c i talk about the behaviors he presented with and that ear issue has faded into the background until i read your post. i think i'd be very suspect about that ear pain! have you gotten results from the culture yet?

JAG - i guess that does make sense that the antibodies could just do their job correctly and attack the strep -- then my head starts to spin. those descriptions are of the involvement of the frontal lobe and troublesome with injury. i meant it reads like a list of my son's troubles. does anyone know if and why it's generally the basal ganglia that we talk about? have other areas been studied also as being affected by the antineural antibodies? the diffuse impairment issue -- i've always wondered how the incident of "giftedness" fits in. dr t seems to contend it's that the child may be of higher educated/intelligent parents who may notice and seek treatment and therefore the child may be inherently more intellgent than an average child. i seem to think it's the child. i wonder if the swelling of certain areas of the brain not only influence troublesome behaviors put also engage other areas that result in higher brain functioning of certain skills.

no - i don't think the questions are stupid - just not sure my brain can comprehend the answers. regarding the use of the word 'stupid'. i was telling my dh about this post -- becasue he so loves it when i retell conversations from this forum -- and ds, 8, told me that i lost two gems b/c i used "the s word" as he calls it and my kids are not allowed to use that word. hmm - do as i do - hmm

i know i have no business in posts like this, but. . . my head starts wondering and i can't help myself! we talk about the strep antibodies affecting the brain. is there any proof that it is/is not also the actual strep bacteria in the brain? i mean, we do have proof of strep in the throat, the gut and the skin - so why not the brain? it's proven that the lyme spirochete actually likes to live in the brain tissue, yes? there is proof that it is the actual antibodies causing trouble, yes? is there proof or disproof that the bacteria could be there, too? does this make a difference in the fight to eradicate strep? i have trouble understanding the "intercellular" concept. is this similar to the lyme borrelia changing to a cyst state? could the strep bacteria change state in the brain? do we know that it's limited to the basal ganglia? could the seeming groupings of symptoms correlate to actual other areas of the brain being affected? please excuse my ignorance, but the basal ganglia is different from the frontal lobe, correct? and the frontal lobe is labeled the emotional control center - involved in motor function, problem solving, spontaneity, initiation, judgement, impulse control, social behavior, flexibility, problem solving, perseverating, non-compliance with rules, emotional liability, immature behavior, dramatic change in social behavior. that right there describes my son's issues better than ocd ever has. i know i'm way too stupid to start this discussion, but am interested in what others have to say.

kimballot -- thanks for sharing your story. i read it initially but don't think i really got it. how is your son after this surgery? recently, i've somehow dragged this out of my ever-present bag of worries -- you know, i know you all have one as well -- i think this has come back b/c it seems noticeable in my son's t-ball picture. he is making a funny face b/c he made a fake smile and the photographer tried to get him to relax but ended up giving him too many instructions and he just got confused. she somehow did manage to get a pretty cute picture. however - in this picture, which is different from most pictures of him -- his nose looks kind of funny, wide at the top. in the past, i have mentioned to dr's at annual visits to please check his nose b/c it seems to me there are areas that stick out. they've always said it's okay and likely part of his anatomy. now i wonder if perhaps, i should press it further. it's been something i've always noticed about his face, pre pandas - in a worried mother kind of way -- not that anyone else comments on. however, knowing what i know now about worried mothers' ideas. . . when we were first discovering pandas, he did have a sinus ct which showed all sinus cavities infected. after abx, he had another which showed much clearing. is it correct that you found this mucocele on a CT? did you notice anything when looking at his face? thanks!

dc mom -- (and others who are going) -- i tried to pm you but your box is full. have you guys set up any meeting times or places? i'm attending for friday only.

i know this sounds a little like 'whose on first' but. . . if you don't check titers and get a vaccine - but if you had checked and they were high -- would the vaccine then be basically useless b/c you already have appropriate immunity to that disease?

phasmid - i can't remember how old your son is but am sure if he has a facebook acct, he's older than mine, who just turned 6. of course, i don't know your son's general personality, but i'd vote for this behavior being due to pandas. initially my son presented with quite whacked behaviors. again, this past winter with exacerbation, he was exhibiting some difficult behaviors. i use homeopathy and when i saw this list, i was stunned that it described a lot of what he was doing -- not that i am suggesting that med for you, just showing a list of behaviors for us that are not normal for him, but are problematic with exacerbation. just my opinon, if i heard of any pandas kid doing these, i'd think it was pandas related. as for the cause, i don't know - is it the strep antibody brain interaction, is it yeast triggered by strep or general imbalance b/c some of these are also described as yeast troubles. does this seem like what you mean: - · Disturbs the nervous system profoundly. It is as if some diabolical force took possession of the brain and prevented its functions. It causes a perfect picture of mania of a quarrelsome and obscene character. Unseemly and immodest in acts. Persists in stripping self or uncovering genitals. Is jealous. · Obscene, lascivious mania, uncovers body, jealous. Great hilarity. Low, muttering speech. · Has no will to urinate · Exposes his person · Clingy and dependent · Fears being left alone · Crude behavior · Uncovers body · Loves smutty talk · Immodest acts, gesture, expressions · Unintelligible chatter · Foolish laughter - does foolish things · Without shame or inhibition · Does things to shock - such as saying doesn't love or sticking out tongue · Screams & bangs if in time out · Rage with unusual strength · Strikes out at those trying to help

i'm using different meds but the theory is the same so i'm interested in other's ideas and theories, please. short version -- my ds, now 6, presented with whacked behaviors about 18 months ago. had high titers and positive culture. 100% remission with keflex and nystatin - 30 days treatment. about 30 days off meds, symptoms returned. again kelfex and nystatin, improvement but not as dramatic. for the past year, investigated many treatments - mostly homeopathic. last summer, fall -- was okay although not 100%. late fall, had a flu and exacerbation. seemingly free of strep. dh was extremely surprised ds didn't have strep due to behaviors. jan, 2010, i discussed if we should investigate lyme again and dr referred to new dr. after this discussion, ds seemed to improve in our eyes. march, terrible school conference, so went to new dr who found lyme and toxoplasma gondii. treating for these. march/april/may -- ds seems about the same as jan, feb -- 'okay, not 100%'. mid-may, dr sees improvement, begin taper down of meds. beginning about 3 weeks after that, possible small ramp up in behavior. mark above lip that could be impetigo starting - vanished in a day or two with neosporin. some small bumps around lips come and go. behaviors increase. begins mouth noises -- possibly tic? last monday, i increased bacterial and fungal med back to previous dose. next day, see improvement - almost no mouth noise. later part of this week, much improvement with inappropriate reactions (one of major symptoms) and general cooperation. seeming stop of wierd antagonism he has with other kids when in exacerbation. happier attitude with older bro, 8. back to interested in older bro's baseball (it's tough, after-season tournaments - many games - it's hard for me to keep interest). i don't think this is an exposure -- too coincidental with taper and increase. what are people doing with adjustments to meds? are you just not adjusting and staying on a dose that seems successful? are you trying to reduce, then upping it and then trying again after a certain time frame?

my son has been gluten-free, dairy-free and egg-free for about 16 months. he had an igg blood test that was off the charts for all varieties of these foods. the naturopath that did it was a little freaked out and she runs that test often. traditional drs told us, 'yes, his body is producing antibodies against those foods, but so what'. common sense told me that if i'm concerned about his immune system being haywire, i should try to give it the best rest i can. i don't think we've seen a major effect for him on it -- he's had remission and exacerbations on it. i continue b/c he's still fighting some infections and i think it's helpful not to overload his system, not that i see any differences for him in symptoms. although, he did gain weight the first 2 months and he was starting to fall off the percentile chart. so, we went cold turkey on all those foods for him and reduced for the rest of us. at first, i was so overwhelmed. both my boys, then 4 1/2 and 7, survived the first few weeks on rice chex. they were/are confirmed carbo-holics. i do tend to be an all or nothing person in general, but i think this was the best way to go. we didn't really have grey areas to deal with. we eat gf/df breakfast and dinner. older son gets what he wants for lunch and can order what he wants at restaurants. pandas son gets grilled chicken or steak at a restaurant and depending on how it's cooked, maybe french fries. he currently doesn't eat much fruit or veggies. too bad - i think a gf/df diet with lots of fruit and veggies is probably the healthiest way to eat. i try not to buy too much processes stuff -- it's quite expensive and i tell him - 'if you can't eat some grapes or strawberries, i can't see fit to buy you a $6 bagel!' he does eat more meat than i'd care for him to, but i can't restrict everything! i make some really good banana-chocolate chip muffins and pancakes and a great chocolate cake and chocolate chip cookies. gf stuff tastes best hot from the oven. i found much help from the magazine 'living without' those first few months. you might be able to find it at the library and i believe, on-line. it's actually not that bad - it's just that it's so totally different from the usually american diet. dinner is actually pretty easy - we do rice pasta, potatoes or rice and whatever else we would have had. i just get frustrated when i want simple rice and veggies and no one else will eat that. i don't know that i think i feel very different - maybe b/c i still eat gluten at times. what i do feel the best at is when i eat according to fit for life. you eat fruit in the am and then during the day eat lots of veggies and do not eat carbs and meat together.

i'd love to meet if it was closer to the DC beltway!

i know i'm soon to get kicked off this forum with my own obsession with the explosive child. i don't know where this falls with ERP techniques of reptitive questions so it may not be good advice. my son did this when in exacerbation. i didn't use this then but would if i had to now. did you try repeating back to him what he's said rather than engaging in a conversation about it? like "you want a pony?". "you want us to get a pony?". "you need a pony?" "a pony!" with an incredulous tone. what i like about this technique is that it keeps me involved with him b/c he will get upset if i ignore him or try to disengage in some other manner. however, i'm not really engaging with him. for my son, it tends to throw it back on him and then he's able to unhook his mind and he can see what he's saying is not really reasonable. if i try to tell him how his mind is unreasonable it seems to only further entrench him.

i'm stealing words from LLM's post on ivig "You have to do what you feel is best for your child and try not to second guess yourself. " so often i am weary and just want someone to take him and heal him 100% but unfortunately, that doesn't exist for us. i am a big advocate of getting opinions and thoughts from others -- but in the end, after learning all that you can from all viewpoints -- you have to do what you feel is best

i do occasionally wade into the scientific discussions where i know i have no business being but . . . so very odd, mom - b/c i just again picked up cure unknown today after misplacing it for a number of weeks -- i was reading about a man misdiagnosed - or perhaps not fully diagnosed - with ALS - possibly induced by lyme that had remarkable results from iv rocephin. the patient was a dr and he and his dr both theorized that perhaps the rocephin 'had been found to stimulate a gene that limited the amount of a neurotransmitteer called glutamate. excess glutamate at the nerve ending had been tied to ALS and suppression of the molecule was one theorized treatment of the disease.' i believe others did not have such good results as this one guy. mom - what are your plans with supplementation? are you increasing glutamate or trying to decrease it's action? i don't really understand what it does.

your son will eat spinach salad ??!! hope you all had a good evening!

tantrums - i'm sorry if i've suggested this to you before and i know i repeat it annoyingly. it's just been such a help for us -- the book the explosive child. i found it last year the day after a horrible tantrum leaving my mom's house. ds, then just 5, was opening the car door as i was driving. he was upset b/c he was not cooperating to leave and i picked him up and put him in the car. he was working on something and then left a piece of it in the house. it was such a horrific tantrum and i wouldn't go back for it b/c he was so beligerent trying to leave and once we got out. i had to stop the car, take him out and sat on the sidewalk with my arms and legs wrapped around him, the whole while, him screeching. a postman kept looking at us, i think wondering whether he should call the cops. the next day, we were in the library and that book practically lept off the shelf at me. of course, i don't know the specifics, but i think your son is not choosing not to listen. i would think he's not processing what's going on correctly. the more you try to get him to listen and comply, the more he just can't process. what do you say once you've said no and he becomes odd? do you try to hold your ground more firmly? when you say you are monotone and repeating yourself, are you repeating your position or his? with this plan, you don't continuing stating your position, you state his. "i'm going." you say, "you're going?". according to this book, you have to temporarily let go of your ground to avoid the blowup to make progress. it doesn't mean you let go totally and let him have his way -- just for that immediate time. someone recently wrote, reasoning at that time is like trying to talk to an alcholic about his drinking problem while he's drunk. you just need to calm the situation. later, when everyone's calm, you can discuss what went wrong and how you could all better react next time. when asked, my son has given us suggestions about how he would like us to speak to him when he is getting out of control. it doesn't always work and we still can find ourselves in frustrating battles, but more often than not, it's a very helpful tool. i don't think i think of it as much as a way to help him learn to control himself but as a way to help me deal with him when he is irrational, b/c i don't have much patience in general. when you work on things in the calm times, that when it can be useful to shape behavior and reactions.

hi brandy. just from our situation, i haven't doubted pandas for my son b/c he had sudden onset, high titers, positive culture and 100% remission with abx. he does have times that he may be upset with a situation and he may have a more normal reaction, it's just a 6-yo getting upset. when he does something like you describe, i know it's due to his brain not functioning correctly. i highlighted the things in your post that could be like a scene from our lives. once i read in an ocd boook, 'it's either yes or no and neither will suffice'. that's how my son can be with decisions, and then cannot accept me making them either. i remember in an interview, sammy said something like, "once, when i couldn't accept help from someone, i wrote on a paper, 'help me.'" i don't think the scene you describe is normal defiance. my son has recently been diagnosed with lyme and toxoplasma gondii infections as well. i've recently told some friends who have looked at me wide-eyed, if your kids are doing something you think is not normal, it's probably not.

have you considered it could be a yeast behavior? when my son first presented with symptoms, many were yeast-like behaviors. i was discussing this with the behavior therapist who didn't believe that was the likely cause and suggested pandas. he did have high titers and positive culture. he had a terrible 5-day run of azith and then later, a 30-day keflex and nystatin brought 100% remission in about 3 days. he was not standing on his head, but climbing and walking and jumping off furniture, with other behaviors that are often defined as yeast behavior. until recently, i credited the keflex. now,possibly nystatin may have played a bigger role. i think he needed the abx to handle strep but could it have been a complex interaction and yeast was causing much of the behaviors we saw? he had not been on any abx prior to behaviors - but i am interested if strep could have contributed to an awful imbalance and yeast come on due to that. i also feel i've heard some info that there is some type of lyme - yeast connection, not from use of abx but from general imbalances from the infections.

arial - i'm sorry, i can't remember how old your son is - young, yes? my son just turned 6 but i had a few thoughts you might find interesting. have you read the explosive child? the technique is to repeat what the child is saying while in a tantrum to calm the situation and pin point the trouble. you can also use it to find out info. if he has this reaction again with the room, you would repeat. . . "i don't want to go there", "you don't want to go there" - you can say it however seems appropriate - flat statement, question, joke. when it seems right, you can throw in a "why". if there is something that he knows is the trouble, it may make it easier for him to say. have you read the book, Brave Ben? it's very cute. last year, my son couldn't make it to the last 5 weeks of pre-school. in the fall, he'd had trouble with school phobia. we thought it was similar - which i do believe it was but it did have some root in trouble as well. he had gotten in trouble over something that was really a misunderstanding on the teacher's part. we found that book in the summer and made our own version. we adapted it to his story and found pictures (he didn't want any real life pictures, only cartoons and was sure to say it wasn't him, but another child with the same name) there's a section where i wrote, "no one knew why. his mama didn't know. his papa didn't know. his teacher didn't know. even he didn't know." when it was complete and we read it, he whispered, "but i do know why." it was that he was afraid he'd always be the kid in trouble b/c he was in trouble that day and he didn't want to always be in trouble. i was stunned to find this out. for my son, he usually has trouble when things just aren't right. he's gotten to the point where he can often tell me, "it's just because" or "there's a reason but i don't want to tell you" or "there is a reason". it may be that he just doesn't know what's up with that room today - or there are some techniques that might help you discover if he knows what the problem is.

phasmid - when we first discovered pandas, ds had an active strep infection. useless ped threw him on 5-day course of azith and stated, "you'll find the behaviors and the strep are not related". it was horrible -- similar to what you describe. he was better when off med. we found a new ped, who put him on 30-days of keflex and nystatin and in about 3 days he had 100% remission. what does it mean? i don't know. could it have been a worse before better situation - herx reaction - and longer azith would have made things better? maybe. could he have had yeast that the azith made worse? perhaps. i don't know. could he for some reason react terribly to azith? i don't think i'll put him on it again. sorry i don't have anything concrete to advise except we experienced the same. until recently, i credited the keflex with remission. was it the nystatin also? how long is the script for azith? could you add nystatin? could you switch abx?