smartyjones

from the article. . ." It's not a rare disorder, it's just rarely diagnosed," said Dr. Denis Bouboulis, an immunologist from Darien, Conn., and one of the top experts on PANDAS. "There are a lot of children actually misdiagnosed as having a primary psychiatric symptoms, when, in fact they are autoimmune and organic." we don't see dr b, but with this published quote, i think i might just love him. thanks for posting!! was it on the tv show?

yes -- i say this is definitely a symptom. my ds was overinvolved with other people when we were at -- like at a store or restaurant. he also did a very annoying, wierd, 'hey lady' thing. he'd walk too close to people and reach out to touch their leg. most people thought it was funny -- this little 5yo who was so precocious. no -- it was wierd and unlike him. i can't really remember, but i believe it is listed somewhere as a symptom. sounds a little different from what you describe, but i definitely believe lack of inhibition is a symptom!

tpotter -- i know i jump to learn from your expertise -- i just can't seem to help myself!! do you have thoughts on the inability to think linearly? i can't really state that correctly -- but you know what i mean don't you? is that something that OT or spec ed can work on -- or is it something that accomodations are made to meet? thanks.

LLLM -- so do you continually test for KPU? how do you know when you've reached the proper balance? thanks.

i am sad to post this b/c it is a big regret for me. . .when i was pregnant with with ds9, i tried to research and decide what to do about vaccines. i found it so confusing -- so much info on both sides. i was a new mom, had no real knowledge of vacc trouble and LOVED our ped at the time. he recommended AAP schedule and that's what i did. for ds7, i was busier, blah, blah, blah -- ds9 didn't have troubles so ds7 followed with AAP schedule. i wish now i had known of Dr. Boch's schedule in his book. so, when ds7 (tougher pandas case) was 4, we had a different ped (who was useless when pandas onset occurred). at 4 year check up -- they said he was up for vaccs and vacced him according to 5 year old vacc -- some song and dance that they had them then -- i think at the time something was in short supply - and it was fine and really didn't matter between 4 and 5 and blah, blah, blah. 4 year check up was in june. we took a trip to denver in july. he had unexplained vomiting which i thought could be due to altitude and had what i now know was his first recognizable episode of cognitive inflexibility with sand piles at my cousins' house that my stepmother mentioned may be red ant hills -- he refused to step on any ground the entire day and clung to me in desparation through the entire party. oct/nov was 'sudden onset'. i digress a bit. . . the point being that 4 year olds can certainly be vacc-ed with 5 year old vaccs -- esp if the mom is trusting the ped and not paying attention carefully to vacc issues! there may also be moms that would like to see their younger child vacc-ed for flu. i do think i agree with vickie that the most concern would be with a live vacc. i know it's hard not to worry but if it's not the vacc himself and it's not something like a school full of flu-mist, he should be okay.

i'd like to know more about the school phobia -- it mentions 'peeling off her and dragging into school'. does she have any insights or coping ideas to share? did that just go away when he was healthy? thanks.

So- here is what I think the psych would tell you- you need to get to the bottom of what is bothering him. You cannot move forward without this. Compliance is necessary. But you can balance it with what you think he can do (but be brutally honest). Really, bossing back the ocd is one thing, but what helped us was to really de sensitize them to the thought Her only compulsion is avoidance, or to be with me. She is almost never defiant outside of ocd. It took us quite a while to figure this out, even though her sister was diagnosed with pandas already. Now, it is clear- as soon as I see that defiance- I KNOW there is something below these are dcmom's words from another post. i started a new one b/c that has discussion about compliance but i wanted to mention the other trains of thought. i keep saying ds7 is healthier than he has been in 3 yrs, but we have this re-emergence of school phobia b/c he has started back to school -- not only new school, but also after a year of homeschool. once he's in the classroom, he's good. also believed by me, but yet to be determined by school personnel (although extremely helpful and willing to find solutions) is that i believe ds has twice exceptional issues, including difficulty with the physical act of writing and process of composition. a few years ago, i read excerpts from a book written by a kid with aspergers. he said school was so difficult for him b/c everything was so very hard and so very easy at the same time. that struck me, even though ds was in preschool, that that seemed to fit him. in many criteria lists of pandas, there is 'unfounded' fears. just this week, largely due to dcmom and some to a new psych who is working with ds to find 'ways to handle' what he hates (ie. school) , i've had a new understanding of the word 'unfounded'. i've been thinking of it incorrectly as 'unknown' and thinking ds has inappropriate reactions due to anxiety that crops up without explanation, a fight or flight reaction that desends upon him, it's just there, no cause. his OCD has been in the realm of 'just right' without webs of thoughts -- it's just not right. i've known it's very real for him, just as if a lion is about to attack and his M.O. is avoidance. now, i'm beginning to see that the fear may actually be reasonable fear rooted in reality for him. it's unfounded to the rest of us, but there is a known basis for him. he's older now vs onset when no one knew what was happening and better able to articulate but still has much trouble, so insights from him are sparse. now i'm thinking it's a flight or fight reaction that is actually tied to something. yes, he has an inappropriate, whacked reaction to it -- but it's not simply an inappropriate whacked reaction. we've been at this for almost 3 years, seen many medical doctors and psychologists, researched, discussed and thought about it ad nauseam. i know we are now in this muddled area of symptoms that could be pandas driven, could be learned b/c ds has been affected between ages 4 and 7, or could be just part of ds irrespective of pandas. but now this seems to very much make sense. duh? -- when the student is ready, the teacher will appear. of course, that's this week and ds is doing well going to school . . . . thanks dcmom!!!

wise, wise dcmom! one of dh's favorite band is Rush and there is a great line from a song we quote often. . . 'if you choose not to decide, you still have made a choice." even though we quote that often, still hard to put into practice.

oh mom -- stay on that soapbox -- i love to hear from you -- you are so wise!

i think there is a special section on anxietybc.com about fear of blood draws

i was supposed to have a meeting today with school on how to now fully extricate myself from school -- i've been going with ds for varying times of the a.m. school personnel had never heard of pandas and have been willing to learn and helpful thus far. postponed until tomorrow. lucky for me, we are in DC area and that article is in the post today!! won't really change anything in the meeting but just nice to have timely extra support. i'm a little confused. we feel we are on the right path with our medical treatment and although i do like to pay attention and be sure i have my options lined up, i have not really paid much attention to the discussion of CHOP and Dr. E. i had thought until very recently CHOP was not helpful at all and dr. E was a roadblock. i know there's been recent posts about people happy with Dr. E and i've been confused about that. Dr. E is mentioned heavily in the article and appears to be a pandas supporter. can anyone fill me in? not even extensively, i just want to be prepared b/c i am referring school personnel to this article so i just want to have some background. thanks!

[quote name='eljomom' timestamp='1317085317' post='121901' I am hopeless. I am paralyzed. eljomom -- i certainly don't want to offend you -- i do feel your intense struggle -- however, i don't think your immediate problem is what to do with treatment for you daughter -- i think it's your frustration, confusion, hopelessness and feeling of being paralyzed. we can all share that -- maybe not to the same level, but the same feelings. the more you post asking for thoughts and opinions, the deeper hole you're digging b/c we all have our different stories, theories, successes and failures. aside from pandas, the past year has been difficult for us (not to the level of when a child is sick and you don't know what's going on -- i get that, i've lived it too) -- but with our house on the market for 14 mths, decisions about where to school, - return to private that had troubles, to homeschool, go to a sub-par public, my need (finanically and mentally) to go back to work, etc. then in june, the house sold and us w/o a house to move into -- so, do we stay with parents, buy quickly, spend too much, do something temporary with possibiltity of switching school mid year -- etc. all with huge questions about what is best for school phobic ds7. here's my advice: obviously, i don't know anything about your religious beliefs -- use whatever, God, higher power, etc. that is right for you. make one list of all the possible choices you have with investigating/treating/accepting as they are, your daughters symptoms. then -- make a daily list of the things you need to accomplish in your life that you can reasonably complete that day, on the right of the page or book, and be sure to check them off when you complete them. then, on the left, make a list of the things you cannot decide or accomplish on yor own and ask for help in direction for those things. be calm and confident that you will somehow be lead in a good direction. it may not be the ultimate direction that will give you all the answers -- but pay attention and i think you will see some direction. as rough as this pandas journey is, i have been amazed at times that a short conversation or chance meeting or tidbit of information has lead me somewhere that has been helpful. good luck!

hi satara -- you're story strikes a familiar chord for me, so i will tell you our story -- it certainly may not be the same for you. ds had sudden onset 3 years ago. of course, we had no idea what was up, but knew it was something. our pediatrician was useless. many, many people said, "oh, it's jsut a phase.' and "he's just being a boy" NO -- this was not a phase. a person i worked with suggested yeast b/c she had yeast issues herself. we were seeing a behaivoral therapist who i discussed the possiblity of yeast with. she suggested pandas and suggested titer testing, which were high for ds. in the meantime, ds was seeing some improvement with naturopathic treatment but not really dramatic. we did a short course of azith, which was disastrous -- all troublesome behaviors came back with a vengenance. we switched peds, who prescribed 30 days of keflex. i asked for nystatin b/c i was concerned about yeast issues. the naturopath also ran food panels and ds was highly sensitive to just about everything. the naturopath did not want me to do the keflex, rightfully citing that the azith had been so troublesome. i just felt we needed the abx. so, unfortunately, we did it all basically at the same time -- abx, nystatin and GF/CF. ds had 100% remission in about 3 days of starting the abx and nystatin. i can't say for sure, but definitely believe it was due to the abx. you do have a lot going on. . . but if you're leaning to abx, you could ask to nystatin also. good luck. sorry -- just read that you have him on nystatin -- i missed that at first. when i did ask for that -- ped did with no problem and told me that for himself, if he has abx, he does a rotation system of nystatin and diflucan. diflucan can be intense but may be something to consider some alternating for yeast meds if you do want abx.

we see an integrative MD who treats with homeopathy. he definitely is concerned about viruses and treats them -- homeopathy. i do beieve he's stated that he thinks allopathic virus treatments are not very good at knocking out the virus and/or not worth the side effects. perhaps your chiropractor is of that mindset - ? - i do feel surprised that he didn't have some types of suggestions for you to help quell the viruses -- i guess he thinks by bolstering teh immune system, it can better take care of the virus - ?

thank you so very much for thoughts and advice -- i so appreciate the time and effort from all my wise friends. last week, we had set up appt with principal, VP and counselor for tomorrow. i think we all agree i need to get out of the school but how that happens is still unknown. i think they are helpful, we'll see what happens. he went quite easily today -- especially for being a monday and him being out sick on friday.

oh momcap -- hope you didn't take offense -- i worded it wrong -- of course, i meant didn't do anything that could tie to the turn around. you're info is so helpful. very similar!

momcap -- i just reread your post -- so you didn't 'do' anything? do you think it was treatment of the lyme, etc that made the difference? ds is doing well fairly well medically but is still struggling with a virus that has been troublesome that he can't seem to fully kick. (we've treated for multiple infections)

momcap -- are you living my parallel life??!! i'm so happy to hear your son is doing well. so, you didn't need the special program or is he in that? -- is he at the same school where he had a troublesome 2nd grade? yes!! that's exactly it -- but i htink people get it when talking about learning disabilities but it's like that with him 'learning' about overcoming this phobia of getting into school -- he can't learn it with motivations, positive or negative. and yes, he's just in public school for the first time, i do believe he is a 2E kid but he hasn't been in such a system to determine that for their purposes and that takes some time. i do think that is some of the trouble. the other being unreasonable fear that drives the anxiety. thank you all for your thoughts. i think -- and hope -- you know how much i appreciate comments and advice. i think i'll always remember when the first behavioral therapist, who diagnosed ds, said, 'what you're describing sounds like OCD" and i though, 'what in the world is she saying? that's not like any OCD i've ever heard of" -- so, i know to be open to all possibilities, even if they don't make sense to me. laura -- thanks for the talking back to OCD book recommnedation -- i don't have that and it looks helpful. i'm not trying to argue -- here's what i don't get -- it's all well and good to say that ds needs to comply with expectations -- the bottom line is that he's not. if told he will have to go to school, i need to hand him off to someone who will take him, kicking, screaming and throwing shoes and have them take responsibility for him. i am willing to do that. i don't have anyone on the other end to do that. the 2nd day of school, the VP was telling me i had to take him home b/c he was not cooperative. in the meantime, they had given ds some books and he calmed. the next day was the same. so we developed this plan that i am involved. so -- without someone to take him on the other end -- what do i do with him? at onset, if he didn't go to school with nice manners, he was required to go to his room and read or do activity books until school was over. he was 4.5 and half-day. he gladly did that -- 4.5 years old, in his room by himself for 3 hours. he does play baseball and is starting scouts. these are good experiences for him for social reasons that he needs. so -- if i hold that all that up as 'motivators' -- i've got a 7 yo with anxiety who is spending all his days with me in our house, reading - by himself. it's a matter of the lesser of two evils and he will pick the avoidance. it's not that i fear this will happen, it's his pattern. he has a chart that he gets stickers for days he does the day's 'step'. the end result is a puzzle book he really wants. it's a good, fun reward system -- but means nothing in the heat of the moment. so, it's fine to draw the line in the sand -- what do i do when he crosses it and the consequences are detrimental for all of us? me and him, here in our house, doing nothing.

so MMWG -- what did you do about this at school?

ds7 - 2nd grade - started back to school 5 weeks ago after 1 yr of homeschooling. this is a new school. so far, they've been fabulous, never heard of PANDAS, interested to learn and help. on the 1st day spec ed was involved to help. next 2 days, very troublesome getting into school -- wild fight or flight tantrum, so they've seen that it's something not 'normal' school anxiety. we've been working an ERP-like plan that was good with me there at decreasing increments. i think he's generally the healthiest he's been in 3 yrs since onset. we've just gotten a new psych who seems to be the needle in the haystack we've been looking for after much frustration with useless psychs that really have no idea about anxiety. i believe it's separation anxiety and phobia vs. OCD but am hopeful this new psych can help sort it out. i am willing to see it could be OCD even though i have my thoughts. of course, there's still much to be worked on to discover roots of cause, plans etc. . . we have a 504 plan meeting coming up, everyone seems on board. letter from psych will state severe separation anxiety and anxiety- NOS; i'm hopeful dr letter should say PANDAS -- neither letter will really list symtpoms. last week was troublesome. Monday was monday and dh was out of town -- ds didn't go to class until ~2 hrs late with me sitting with him in an area of the library. tues, wed were good - went to class with me staying until after, then before announcements. thurs was very troublesome -- he went to class after lunch -- me with him until then. they sent up work for him to be done. he was eager to do it. fri, he stayed home b/c was coughing, tired and stuffy (staying home = the kiss of death for school anxiety!) i think last week was a perfect storm for him -- he has a cold, dh was out of town in beginnig, this was the week we'd worked up to that i should just walk him to class, he saw the psych for the first time and talked with her about it (very productive session -- i was floored at how forthcoming he was). so -- his M.O. is avoidance and refusal -- so all this kicked in for refusal. he has been doing wonderfully once in the classroom -- participating, following directions, rules, etc. in only the past week, he's been stating "i HATE school" and expressing troubles with the physical act of writing and coming up with ideas for writing and other discussions. so, the unreasonable and unexplained severe anxiety of getting into the classroom has not been settled. it's now starting to meld with reasonable anxieties. i have actually made some progress with him in discussing this and working toward solutions. he's seemed to feel more at ease when i've said we'll talk with spec ed and develop solutions and plans. but of course, since his pattern is refusal and avoidance, that kicks in. here's my biggest fear about him in school -- his anxiety presents with avoidance, refusal and defiance. i KNOW the medical and the psych behind it without a doubt, BUT i still find it challenging to keep in mind that it should be 'me and him against anxiety' and find it so easy to slip into 'me against his will'. so, for those with him at school, i fear it's easy for them to think they are battling his will and treat him as such. so -- i'd love any advice on how to work with school personnel b/c i am beginning to fear that they don't understand b/c they see 'golden child' who CAN do all that he's supposed to but they are missing that when under the thumb of the anxiety, he just can't bring himself to do it, not that he's fighting just to get his own way. i think it's very easy to think 'he CAN do it, it's just a matter of if he WANTS to.' i cerrtainly believe that 3 years ago, i could have sort of understood but really also just shook my head and thought 'he's playing you to get his own way, you just don't see it' whereas now -- but only after living it -- do i get the stranglehold of anxiety and that plans need to work with that to defeat it rather than fight against it. thoughts? help?

WOW -- that's fabulous -- almost any one of those things you list by themselves would be great progress -- but all together!!! would you share what you are doing as integrative treatment? thanks.

i've been wondering lately about the role of the BBB in symptoms. at the OCDF conference last year, there was mention of stress being a factor in the premeability of it. so, it seems that stress could affect the BBB, making it more permeable and antibodies that may still circulate in the body but not affect the brain could then get into the brain and cause trouble. stress not necessarily being from traumatic events but simply changes in schedule or increases in responsibilities, etc. the other thing being new exposures to things that could ramp up the immune system to protect him, thus causing symptoms but him not necessarily being sick. my kids have been in school 5 weeks -- there's already 2, if not 3, cases of strep i've been notified of and some other communicable infection. unfortunately, i think schools are big pools of infections.

i've been thinking a lot lately about the role of the disruption of the BBB in symptoms. i happened on this from NIMH concerning the BBB and HIV infection. http://www.nimh.nih.gov/science-news/2011/hiv-infected-astrocytes-disrupt-blood-brain-barrier-contribute-to-cognitive-impairment.shtml

please MMWG -- i know and fully understand what you are saying -- try to see it in a different light. i am stunned and amazed at how much progress has been made in the past 3 years. it's really unbelievable!! ds7 had 'sudden onset' almost 3 years ago -- halloween time -- so many of our 'anniversaries' of memories are starting to come back in my mind. this was, i think, about a year before Saving Sammy was published. anytime i see him (including the Today Show that i've seen 9 thousand time) i just can't help the tears flowing. but i think of it in that here is a kid that was recommended for long-term in patient placement b/c most seem to agree that it was too difficult to meet his needs. so -- here he is now -- i think a junior at Carnegie Mellon - ? -- and looking and seeming very healthy. as horrific as his path was -- and many here on this forum are -- there are success stories that are inspiring also! i know all too well the backslide and it is so heartbreaking. many here on this forum can feel your pain. my ds had 'sudden onset' in oct. 2008 we were relatively 'lucky' to get him on the proper abx and saw 100% remission in march. of course, i didn't know so much then and thought he was cured. after about 30 days off the abx, he slide and i was devastated -- absolutely unprepared and unaware. since then, i've tried to have good plans a, b and c and i think that helps if you feel you can have options in place. so -- i'd suggest researching and working towards a few contigency plans of what you could do and where you could seek help.

you may have more success with the term 'integrative MD' or 'integrative physician' instead of alternative. integrative are usually MDs who have traditional medical training and then study alternative modalities and formulate some sort of practice combining the two. alternative usually will bring you to someone who does not have a traditional MD background. we see an integrative MD who was recommended by another of our medical practicioners. i have never done this -- but wonder if you could get a referral from Dr. Andrew Weil's clinic -- ??