smartyjones

i would not wait out anything involving weight loss. so -- i would speak to dr as soon as possible about your concerns. when ds7 was first diagnosed, he was put on azith for 5 days. it was terrible. huge increase in some behaviors that had subsided somewhat. we saw no good side. at the time, didn't know about herxing. i was so happy when 5 days ended and he improved off it. about a month later, we went to new ped, who put him on kelfex = 100% remission in about 3 days. but it didn't hold when off abx. about 1.5 yrs into treatment, he was put on an anti-viral that created an intense herx with food refusal. it only lasted about a week, but it was intense with ds drinking just enough each day to stay out of ER for hydration. very frightening. it was also quite interesting to see in us how what we believed to be a psychiatric/infection issue created a whole host of psychological reactions from us and him as all of us were grasping at straws to fix this. we were in close contact with his dr and it turned around as the dr believed it would but i would not have been able to 'ride it out' w/o that involvement with the dr. i'd say, get in touch with dr - inform him of ALL that you are seeing - good and bad. perhaps after you speak with him, is there someone else in the office you can keep in contact with daily/every few days to track progress and make further decisions? good luck!

in looking at a few homeopathic remedies, their profiles mention high levels of copper. just made me think -- isn't there a zinc-copper link? if you are treating KPU you're dealing with a zinc deficiency, right? are you addressing copper as well? thanks.

ellen -- i send a PM and wish you and your son healing. interesting find -- http://www.hopkinschildrens.org/Infectious-Findings-for-Schizophrenia.aspx anyone know of this guy and his involvemnt, if any, with the infamous 'white paper'? Robert H. Yolken, M.D. -- of course -- johns hopkins! sorry, yes -- i'm jaded but he sounds interesting.

dcmom -- first, i had to laugh -- so, the time-out strategy isn't so effective on your husband?! sorry, i have to take my laughs where i can get them. secondly, are you &*&*& kidding me??!!! -- ds has had recent stress-induced exacerbation that he is mostly out of. we are now seeing much non-cooperation and avoidance. his MO is avoidance and there are some things that are more reasonable -- like writing issues and school that we are investigating. i don't have so much trouble with that, we have strategies to work through. it is the general avoidance that is impossible to get through. the day you posted, we did a 4 minute sit-down that flipped the switch into nice cooperation about school work. just now, he was avoiding eating breakfast -- which makes me nervous b/c then gets general kid needing to eat issues -- dh started 'requiring', ds ran into room with a screech -- then, 'you can either sit for 4 minutes and then eat or you can eat now." "i'll have chex please" of course, this is the beginning but that's about the 3rd or 4th time to end this kind of avoidance in it's track. which is one of his most difficult behaviors b/c there's not a good way to reach him about it. ds has issues with certainty/uncertainty -- i'm thinking this somehow has something to do with it -- the threat of lost priveleges doesn't so much work -- not immediate enough, maybe with uncertainty -- this is quick and certain. that's a whole different issue to deal with but first, we need the basic cooperation to move through the day!! you really should hang out your shingle!

does anyone have suggestions about the NIHM study for this situation or ability to access Dr. Leckman to help in this situation?

ds had 'sudden onset' 3 years ago - primarily behavioral issues. of course, we first sought help from the psych world. i now think we were extremely lucky in that the first behavioral therapist suggested pandas. but, she did not have help with practical coping solutions. we then went on a very fruitless, frustrating trip in the psychological/psychiatric world -- seeking coping skills and only getting useless suggestions. i had basically given up b/c i couldn't see wasting more time and money and hope in that world that just didn't get it. although i firmly believe coping skills and strategies are absolutely necessary, i just couldn't find anyone to help provide effective ones. i found much help from anxietybc.com and books by dr. ross green -- The Explosive Child and Lost at School. this fall, ds went back to school and although that has been an absolute disaster, they did recommend a psych who is an absolute needle-in-a-haystack. i've discussed that with her and she mentions that she used to be like the others b/c that's what she was taught throughout her education (she's likely in her 40s) but then she realized that that just didn't work and she needed some real strategies that did. she is very creative and all the ball. i kind of got lulled back into the validity of the profession and we are seeking to do neuropsych testing for ds. i thought we found the perfect guy to do it -- great recommendation, neuro background, school background, said all the 'right' things on the phone -- only to sit in his office for initial visit and wonder if he needs to retake psych 101. so i think it's like most things, that there are good and bad therapists -- only more apparent here b/c the good are few and far between and we are so in need of them. i've recently gotten a ton of help here from dcmom from her experiences in south florida. i think she should hang out her shingle. if you like, i could pm you some of my notes and questions from our first visit with current psych when i was trying to determine if she could actually provide help. sorry to sound so jaded and i sincerely hope you find the help you are seeking!

yeah - i was interested to see those comments also. for my ds, he had 'sudden onset' at age 4.5. prior to that, he would often (can't remember, but maybe every 3-4 mths or so) he'd have a fever randomly for a short time and then get over it. he'd also occasionally vomit. he was so young that we just thought it was how his body processed whatever it had been exposed to. he may have a fever and then move on. i have wondered how that history is related to pandas. perhaps, he stopped doing that and then we had the pandas reaction - ? maybe we would have seen pandas behaviors sooner if he didn't have the fevers? i don't know -- but interesting.

please info and thoughts about kennedy-krieger for neuropscyh testing. this seems ridiculous to me b/c i think i am one of the out-spoken voices about JHU being troublesome for pandas -- due to personal experience in the beginning, not so much troublesome, but just not helpful. i am not looking for help for pandas treatment, but for neuropsych testing to tease out if there are neuro issues that affect ds -- specifically with handwriting and communication. i have long railed against the 'long-arm of JHU' as i've dramatically put it b/c we are geographically close. however, we had a ridiculously stupid consult last week with a highly recommended D.eD fo rthe testing that was horrible. it was as if i had written a paper on how to have ds be non-responsive in an appointment and he followed it to the t and then decided ds likely has a 'behavioral issue'. really?! why the *&*& do you think i am sitting in this office? of course he does, we're trying to decipher WHY? complete with his first questions to my school phobic 2nd grader who is currently out of school being what grade he's in, who his teacher is and what the name of his school is. I myself have trouble answering those questions briefly. (i have no problem with him asking those to see the reaction, but as rapport building and then wondering why he doesn't trust him is my issue) i have a history of migraines with aura and i know what it's like when your brain is not working the way you want it to or it normally does. i am looking for someone who can do the testing to determine if ds experiences something similar and won't just take the easy cop-out of 'he's not doing what is required of him'. seriously? -- 'willful non-compliance' in 2011 with a medical diagnosis??!! it's looking like kennedy krieger could help but i am very leery of the assoication with JHU. anyone have thoughts? thanks.

i do not have OCD myself. . . i agree with what you say AND i think it's important for the parent to help set the stage for the child to be ready. my child is young - 7; had pandas onset at 4.5. i believe now his emotional ag/frustration level is somewhere around 4 or 5, so i set my expectations as such when he is having trouble. of course, that's a learned skill and one dh and i struggle with all the time. i think it's important but so hard to learn to discern. . . i think it's the parents job to lead the horse to water, but no, you can't make him drink. but i've found it most successful if the leading is appropriate and personalized. but oh so hard to discern -- what's appropriate leading vs. pushing vs. drinking for him vs. leaving him to find the water himself.

unfortunately, the conversations about both are way over my head. in light of trying to change only one thing at a time, if you had to pick, which would you? i am looking for something to help with anxiety -- not unreasonable or unfounded, actually basis is quite well-founded --it's the fight, flight or freeze reaction that is over the top. we now have a good psych and some good coping strategies -- ds is doing well with them, but still has times, the switch flips before he has a chance to manage the frustration to use the strategy. so, i guess -- i'm looking for something to help with calming the immediate frustration and adrenaline rush so as to be able to think to use a strategy. these are usually identifiable triggers that we are working on solutions for; however, it is proving impossible to catch all the land mines before he steps on them. thanks.

about 9 mths after ds was diagnosed with pandas, i found a bloated tic on me. dr put me on 2 weeks doxy. i felt very sick on it, but nothing else. a year or so later, i went to ds's dr (integrative MD) just b/c i just didn't feel well. how could i feel this bad in early-40s. a few years earlier, blood tests showed thyroid issues, never really felt better w/med, but blood work looked great. at the time i was diagnosed with that -- i had severe tiredness -- like i'd lay down on the floor to play cars or read with my kids and fall asleep. i also had at various times -- tingling arms and legs when sitting or having my limbs on something -- like armrest; return of migraines that i'd had as a teen; weight gain, bizarre foot issues (at one time i thought gout); irritability, bizarre chest tightening and rapid heart feeling; difficulty short term memory. i'm sure there's others -- generally thinking aging was hitting me hard. dr believes me to have had lyme, babesia, bartonella and some other infectious issues. 4 mths into bart treatment, bartonella rash came out on my upper thigh. i think i had the infections prior to the tic bite -- possibly even congenital from my mom. kind of bizarre that the doxy didn't really do anything -- perhaps it did but not really noticeable. or perhpas it stopped another infection. good luck. keep us posted.

greenmommy -- you don't mention if this is first exacerbation or you have been dealing with this for a while. . . for my ds, when he got on the correct abx for him, he had 100% remission in about 3 days -- ~5-6 months after onset. he was on for 30 days. i thought he was cured. after about 30 days off abx, he backslide and thus began our real journey. we now follow an integrative approach with homeopathy, but. . . i certainly recommend keeping on abx until you feel you have some sort of handle on what is happening and have consulted with an 'expert'. i'd suggest trying to keep that abx until that appt with dr. l. good luck!

just wanted to mention that the mom quoted, Susan Dailey, is a HUGE champion and warrior mom for PANDAS and OCD. when my first son was overdue, and finally arrived 12 days late -- we were planning a birth-center birth w/midwife and i was ready to go for pitocin! my acupuncturist said something like, 'you have the strength of all the woman who have gone before you' -- as horrible and lonely as this PANS fight is, and it mostly doesn't seem like it, we really do have the energy of those who have gone before us with us. thank you!!!!

we had a short bit of extreme OCD non-eating with ds7 last year July. i believe it was due to the addition to an anti-viral treatment. our integrative dr believes it was likely a symptom that just hadn't appeared yet and if left untreated, would have eventually shown up. the extreme part was failry short -- a week or so -- but extreme! -- he drank just enough each day to keep himselft out of the ER for hydration. it came on with questions about expiration dates and quickly progressed. seemingly the only change was the addition of the anti-viral. it began to dissipate, seemingly due to nothing we did. he began eating enough after about a week but was slower to shed other wierd food things. for us, it was quick and moved out of severe worry soon, HOWEVER. it was very interesting to me to observe and be a part of such an extreme situation where it was easy to see how the psychiatric and/or neurological basis are then affected by the psychology -- meaning -- how our actions and interactions with him concerning his behavior did and could have further exacerbated the troublesome behavior. so, i agree with tmom that an eating disorder team would be a good step even though you believe it to be related to pandas and ivig. in fact, this is a good reminder to me, that i don't really have such a good plan b in place if we see this type of thing again.

peg -- i know you have been trying a lot of new things lately, right? not at all to suggest any certain infections for your dd -- just wanted to say my personal experience -- i've mentioned before my experience with migraines with aura. last year, while being treated for bartonella (with bart rash developed), i experienced some of the worst migraines of my life. the worst -- i think i slept for 3 days and was considering if i should go to the ER -- strangely after we had been trainspotting -- still wonder if it was the quick flashs of trains or the electrical fields that could have had something to do with triggering. a year later, knock on wood -- no migraine for about 6 mths. our integrative dr believes my migraine history is tied to infection and that increase is tied to treatment. i know you have to deal with all the immediate you are experiencing -- possilby could this be also some clearing of something for her? i do believe it was for me. good luck!! and i agree -- tpotter is a genius!!

so -- i've been posting about our disastrous school situation. . . still unsettled and we are heading for private neuropsych testing. a friend of mine has been helping . . . her son had 'behavioral' trouble from kindergarten (no diagnosed infections -- i think you know what i think -- but not the point of this post). . . when in 3rd grade he was finally tested, his IQ scores were about 155. . . his written IQ was about 70. poor thing suffered through 4 years of school with the whole focus on his inappropriate behaviors.

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can anyone comment on inositol vs. curcumin supplement like enhansa? thanks.

great news susan!! have you checked out anxietybc.com? there are some great worksheets on there. we have used the fear ladder -- but not so much in the way intended. it is supposed to be a fear heirarchy of 1-10. when we first found it, ds was unable to do ratings and we used it just to keep track of progress. there's also some great graphics in their worksheets. recently, we used it to record our steps for school. we'd set up the step -- either him by himself or with consultation with me -- and then when he completed the step for the day, he'd put a check by it and also get a sitcker for another chart that was working toward a reward. he has just recently been able to rate fears 1-5 from what to do when your brain gets stuck, so he was also rating the step. it also helps to clue you in to what she may be thinking that you don't realize -- there may be something that throws off the progress that you hadn't realized and this can alert you to it before hand. ds likes dot to dots so he's also done some charts where he gets to complete one line. ds9 was jealous of the chart and stickers -- so he has begun a 'challenge chart' with stickers -- mainly for social anxiety issues, uaually with speaking to teachers or coaches. congratulations on progress!!

so - i know that neuropsych testing may simple show pandas symptoms that may dissipate as the child heals -so, may give a picture of pandas and not necessarily the child. we're at a point that it's all rollled into one anyway. but -- i think we're at a point that we need it to work on some issues with ds with school in general and with respect to writing activities. today, in doing work with me, he wrote a simple 7 word sentence as an answer to an essay question (2nd grade level). when he dictates to me -- it's a beautiful, well organized, insightful paragraph. i am a huge fan of ross greene - who generally states is all lagging skills and unresolved problems - so why not just simply work on those. to me, it's easy to see those lagging skills and unresolved problems that ds needs help finding solutions to. the school is not even close to that line of thinking. i think we need some sort of official validation. of course, i realize we need to be prepared that testing may also just leave us with unanswered questions as well. please -- those who have done such testing -- can you tell me your experiences and thoughts? thanks.

can't say this is your issue -- but viruses have been a big issue for ds. first - strep -- pretty classic onset presentation -- 100% remission when on the right abx -- but backslide when off then - lyme -- not classic symptoms of aches etc -- i think likely underlying congenital to add to the bucket to overflow but not major symptom producer. no coinfections, but parasites and viruses. various viruses have been troublesome for the past year for him -- trouble kicking them or they return after being gone. tpotter -- didn't you say viruses were a discussion at the texas conference? we have not tested for immune deficiencies. i am now wondering the role of this possiblility in trouble fully kicking these viruses for good. you may want to check out toxoplasma gondii -- traditional drs often think of it in terms of gi issues. dr t was aware of it a year or so ago and referred a couple articles. our dr told me about an article --something like 'crazy for cats'. it's the parasite that is why pregnant women are cautioned to not change cat litter. is linked with schizoprenia in more than one study and other mental health issues.

ds has had trouble at school -- i believe it's the pandas trap of remission -- 90-95% of the time, he appears to be a 'normal' kid. but that 5-10% is troublesome. for ds, it's strong anxiety. he does have some asperger-like symtpomswith social communication that add to it, and other possible issues with writing. the school is totally seeing him as a regular kid chosing to be troublesome. it's all at a terrible, terrible crisis. he's okay -- b/c he's home with me -- but there is much to work out with an adversarial school. i am fortunate in that we have a savvy advocate and i may have found a testing psych who may provide help. i am in a terrible state. i feel so bad that i even had him in school in the first place. i know better. i know no one understands this. it has taken us 3 years and 3 psychs to find our current who is the only one who has been helpful. it's apparent to me now that they never reallly understood what i was telling them. i've talked to ds's psych who has been helpful but i am in such regret of how things went down and that i should have known better. any words of wisdom? thanks.

i haven't seen much mention of people seeing dr t lately. it seemed to me, he wasn't so much a big promotor of ivig in the past. i'm not sure if that's b/c he didn't have the access or just didn't have it in his treatment procedures. does anyone know his lately ideas? thanks.

hmmm --- the extended million dollar question -- on the initial surface, i'd guess the rages are totally related to infection -- or at least, the process started by the infection. so - i'd say your relative should fully explore strep/TBI/myco and all the various infections. but with the thought that the infection is triggering some faulty thinking that can also respond, at least in part, to coping strategies such as ERP and learning new skills or strategies. with the disclaimer that sometimes, the brain is just not able to respond b/c it's so overwhelmed. i do think there are situations that the brain needs to calm first to be able to deal with the strategies. as the infectious process goes on -- to what extent is the body affected in an autoimmune manner and what does that bring on? to me, that's the bigger one without the 'easy' answers. unfortunately, i fully realize the ridiculousness of stating healing these infections in and of themselves as the 'easy' answers! for my ds, we're still in the process of peeling away the layers of infections. he's not 100% as far as infection, but was very much improved. we have seen a wild herx to an antiviral that included extreme behaviors that i attribute totally to infection. he's also only 7, we've been at this 3 years -- what inept processing and coping does he have from that that may be learned brain function but aren't infection driven? with recent extreme stress, he went into a pandas-like exacerbation. we saw great results with motrin therapy. what does that show? clearly not so much infection. i think it's got to do with inflammation in the brain or of the BBB. but -- what is driving that -- stress or further infection? just last night, i saw his interior nose inflammed and he's coughing and throat clearing this morning. i'll take him tomorrow to see if it's a sinus infection. could that have been what i was seeing that is just coincidental to extreme stress and it really is infection based? so, just this morning, he was out of control with upset that his brother had an extra cinnamon roll more than him. only one solution that we get more. angry and inconsolable except for that solution. unable to really work problem solving model that has been a gem in last few months. 20 min after 1 does of motrin -- calm, interested in activities and doesn't care about the roll. when i asked if he had anything to eat this morning, "yeah, i had a cinnamon roll" with a smile. how familiar is your relative with the infectious-neuropsych world? maybe you could suggest a mortin trial during time of rage or upset, just to see what happens. many pandas parents have success with it. that's not to say that if it has no effect, it's not strep or infection related.unfortunately, it's a stop-gap and not a long term solution, but can be helpful at times.

hey lyme mom!! please update on your kids and yourself! for the immediate coping skills, i recommend The Explosive Child by Ross Greene. he also has a couple web sites -- lives in the balance - is one. you can google search. there are techniques we have found successful in calming a rage. there is discussion of emergency problem solving in the heat of the moment and proactive problem solving. we've had good success even in exacerbations. not always, but most times. most importantly, it gives the parent something positive to do and a guide for not getting dragged into the rage/explosion. the kid is out of control, it's imperative the adult stay in control -- but when you're dealing with a rage, that's next to impossible without a clear plan of steps. i've posted ad nauseum about it -- you could search the pandas forum with 'explosive child' as the key. these illnesses are such steps in learning -- i've only recently reached another level of understanding of the word 'unfounded' used often in symptom lists with fear for pandas. 'unfounded' should not mean irrational, unknown or without cause -- it may be that the level of the reaction is unfounded to the cause -- but there is more than likely an underlying cause that is quite reasonable. or even if it is not reasonable to the general public -- it seems so to the person with the rage or frustration. you need to deal with that to get to the real root of the rage.