smartyjones

awesome phila -- me too! i can't find too much info -- a1298c doesn't seem as discussed or researched as c677t. surprised to see my pandas ds is neg for all mutations. there does seem to be some realtion btween a1298c and b12. my neurologist tested me for this b/c i asked while she was doing other blood work. she is blowing off result but also found me low on b12 and is giving me shots (i see her for migraine headaches). so i kind of feel i'm sort of doing something about it while trying to figure our what to do. please let me knwo what you discover.

so -- now we have labs that can give us a KPU result -- then what? who are you seeing to treat that? i feel there is a real concern if you already have a screwy zinc/copper ratio -- to be treating that without good medical support. what are you doing?

this medical organization in IL apparently works with pryolle and methylation issues -- anyone have any experience or knowledge of? please PM if more comfortable discussing. thanks! http://www.mensahmedical.com/Seminars.html

i know i should know this . . . it really doesn't matter b/c we don't rely on typical testing. . . but what does band 41 igg and igm mean? is that the one that is reactive with other conditions? can someone just give me a quick run-through?

i haven't read it in some time -- but i think Kenneth Bock's 4 As book has some good recommendations about vaccs -- with considerations for day care or not/ what to get young/ what to hold off on. when i read it, i had already vacced my kids but was sad i hadn't known that as a resource.

when my ds was first diagnosed, he was 4.5. he first went on 10 days of zith that was terrible for him. we switched ped and the new one put him on 30 days of keflex. he was 100% back to normal in about 3 days. he continued on the keflex for the 30 days and was great for about another 30 days and then he began to backslide. i was devastated. i thought he had been cured! i was stunned and unsure what to do -- this was 3.5 years ago - pandas info much less and i didn't even know about this forum. we put him back on the keflex -- although it wasn't as strong a dose -- he saw some gains but not the dramatic differenece from before. i would say use your time on the abx now to get plans A, B and C in place. maybe you'll never have to use them - which would be great -- but you'll have some plans in line in case you do. good luck!

wow -- thanks vickie for that heads up. so sad -- i'm on the wrong coast -- but would LOVE to live vicariously through those who go. PLEASE anyone who goes, post info. ds is just mostly over (6 weeks) exacerbation i believe due to a rash caused by allergic reaction to sunscreen. motrin calmed the immediate issues -- but i couldn't use that long term. i have to think it's BBB involvement that a breech allows soemthing to reach the brain.

i am not sure how old your son is, but what you describe is similar to what we see in my ds7. i'll tell you some of my thoughts based on our experience. . . we have recently had cognitive testing on him and he is quite textbook 2E - twice exceptional meaning he has high levels of processing and lower levels. he has always had a fabulous "puzzle mind". part of this profile is a literal take on things. i think that is his mind - regardless of pandas. i am unsure if the lower levels are "caused" by pandas - it's in the area of working memory, so i think it could be, but could also just be him. so, i think he tends toward the literal anyway. we see a big step up in this during an exacerbation. i think for him it's like it gets magnified in an exacerbation. i agree it's likely OCD processing also b/c ds tends toward "just right" OCD. so i think it's like he's close to the edge anyway in personality but can function fairly well but an exacerbation pushes him over the edge. i've just become aware of what i think is a fabulous program called "Social Thinking". do a web search -- it's ALOT of info -- if you can't find it, let me know. ds also does things like in a restaurant loudly telling dh, "you LIED, you're a LIAR. LIAR, LIAR. " b/c something wasn't as precise as he had first stated. we've had the most success with first agreeing with ds that yes, he is correct that it is not as first said, and then working on the appropriate way to discuss it and state his point. it's just much more successful for ds to be available to understand if we first validate his thoughts rather than when we first addressed how he was behaving -- that just seemed to solidify the brick wall and resulted in everyone being frustrated. we've made a code word for when he does this with friends -- like arguing that the truck of one neighbor's dad is NOT a monster truck, it's jsut a regular truck when they like to call it a monster truck. he does understand that people don't like to be corrected and won't want to play with him if he does it all the time -- so he can get that he has to chose what's his priority -- being correct or playing with the kids. so i will say to him "YAC, YaDHaTS" -- "you are correct, you don't have to say". this seems to satisfy him and he can move on. if the kids keep calling it a monster truck, he digs his heels in; if i discuss blah, blah, blah - you're annoying the kids, etc, he digs his heels in. if needed, later, not in the immediate situation, we can have a much more productive conversation and discuss strategies for next time. this is something that seems to be better and worse according to exacerbation. i may have read in another post about your dh - ? - a common symptom in 2E is "won't take academic risks, takes risks in other situations". at times, i've wondered if ds would make a good stunt man. we went skiing for the first time this year - he was stunning - i wish we lived in a area where i could put him in olympic training! -- it's all balance and perspective -- right?! edit -- just read roving mom -- yes, common sense is an issue -- actually comes out in ds's cognitive profile (one of things i question 'caused' by infection) -- i think that is a big part in his reations and behaviors to what he takes literally

i seem to be finding contradictory info. does anyone spray their yard with permethrin? it seems to be fine in general, but i am wondering if it is okay to spray around a vegetable garden, anyone know?

i just checked out avon and they have free shipping this weekend -- what is it that i want -- the ones with picardin? please advise -- thanks!

t.mom -- my kids have had known problems with viruses in addition to strep - so I am heightened about viruses also. last year, my mom did get a bad case of shingles. i did keep my kids away. i can't swear to it, but i do believe she asked her dr if he thought she should stay away from them and i believe he said it would likely be a good idea. we do live close to her and see her often -- i think it may have resulted in the cancellation of some event but can't really remember right now -- so not sure how troublesome it would be for you. one of my kids -- diagnosed pandas 7 yo -- when i got his medical record, there were notes i had called concerned he may be having a reation to chickenpox vacc -- it couldn't have been too bad, becaseu niether dh nor i remembered -- but that also helped decide that he was not seeing her when she had shingles. i kind of do think there is some controversy in opinions over the shedding period being longer than people give credit to. good luck!!

i don't have much time and don't really have my thoughts togethers -- i do actually think what you are describing can/may be related to OCD. i also have a family member who does ridiculous describing of mundane events/situations -- i do believe she has OCD issues -- actually, i believe she had pandas as a teen -- she functions quite well but it does get in the way of personal relationships in ways like this. i can't think right now where i would put this in "types" of OCD but can think about it more if you like -- but i do think it's related to OCD. good luck!

just curious -- what's the current thinking about the time it takes titers to show after the tick bite?

for those in the know -- how much of a mainstream medicine concept is this? i have an appt with ped tomorrow to discuss testing -- he is generally open and a good member of our team, although not the person who 'treats' pandas. i'm trying to get it through him so more likely for insur coverage but curious if you can give me an idea of how out there it might be -- keep in mind, we treat with homeopathy -- so i'm okay with different paths and perceptions -- just trying to get an idea of where it might be. thanks.

just read over quickly and don't have much time --- did you discuss babesia with LLMD? unbelievable -- but i feel a little foggy on my TBI and symptoms -- a year ago, i felt it was forever ingrained in my brain. i'm curious who you are seeing in MD -- can you PM me the LLMD name? thanks

just wanted to mention that we had what we (and our dr) believe to be an extreme herx reaction to an antiviral treatment that included severe symptoms we had never seen before. food restrictions and food contamination issues. our dr commented that these may have come out in the future as general symptoms. they left without much influence from us -- which makes me further think it was a herx. it was not something i would have liked to go through without close guidance from our dr.

have you tried motrin? i used to refer to it as "magic motrin". you could search the forum for posts and it may be something to buy you some time as you figure out options. good luck

brown eyes -- sorry to say, and i know b/c i took one off my son last weekend also -- according to my state's dept of ag (which i think may only be one state north of you) -- the lone star tick is a possible carrier of rocky mountain spotted fever, q fever, tularemia, tick paralysis, human monocytic ehrlichiosis, all in addition to STARI. note -- that's according to what the state dept of ag. acknowledges. so yeah, i'd say consult with that LLMD! good luck and i'm shaking my head sadly with you!

i'd definitely push to see the LLMD. my integrative MD, when i first saw him, was quite sure my history of migraines was related to TBI. with treatment, the migraines went away. . . until a few months ago. he then believed those to be related to a virus -- they were different than my usual history -- severe! with treatment, those have cleared. i very much like my new neurologist - but basically got a shoulder shrug. i am a strong believer in the TBI/infection/migraine connection. anyway, at that time, i did get some advice i'd never heard that seemed to help. put a cool washcloth on the base of the back of your neck. i think it soothes the blood vessels coming in and out of the brain. it did seem to help. Good Luck!!

thanks LLM -- i was hoping you'd come to my rescue. i don't see the info on how to do the test on the website. did you get that from your dr?

sorry -- i know it's been posted many times -- i can't find it in a search -- how do you do the pyroluria test? it's a pee test, right. and you need a dr signature -- does that mean results go to dr or to you? thanks!

why do you think the pepcid has such an impact on fight or flight episodes? thank.

please share -- what is it?!

tpotter -- fascinating! you think you've gotten it under control with acupuncture??!! are you also taking meds? mind sharing what type -- weekly, semi-permanent? stunning!

i seem to remember some time ago, someone posted that they were going to be speaking at a conference in the spring, possibly a school psych conference - ? was that true -- did anyone do that?