Fixit

Thanks ladies... i will try to pull back...maybe change one thing....we haven't had open doors or window for years...unfortunaely he goes outside after lunch....and i asked about his tics being worse and he said it was worse after being outside.....same cause effect as last spring....wake up in what ever state...come home 10xs worse.... last years teacher was so awesome and she was writing me almost daily noting the change after outside recess it was also warm today...since the taper,..if he acts up, i could almost relate it to inflammaton...cold drinks, showers, turn up the air, cold compress. and some ibf...he would settle right down.... we have not done steroids in 42 days..so i was thinking that maybe that settled his taste buds too to not react to pears...they are the mildest on the salicitlate scale.... no grapefruit extract that's at least for a while... i have zytec...will add that in morning....i dont know if that really ever helped ds...but i don't think it worsens anything for him did someone say something about pecid ac or pepto bismol at some point to help allergies... singulare bad...right. what about the B's thing is ...not only trying to relieve symptoms, which i know can agreivate..tics and ocd...but want the allergen to not get to brain or make it trigger...the quercitin was really something...that somehow seemed to change the chemisty... i'll also be calling dan office and doc b in morning still trying to get insurance straight as new about 3 weeks ago...need to get tonsils out yesterday...i'm done!!!

this is what concerns me...ds had high iggs...going down..had draw again,,waitng on results... even if igg to normal level...does that mean its gone??? is it like chickenpox and comes out later .... now, ds not only has to be on diflucan with aug...but now it looks like zith may constantly agrivate c.diff.... and another question..i realize no one may know...but maybe someone does....if they checked the heart and it was there...would the check the rest of the body to see if myco was in another organ, through out the body...or is it hiding in specific organs???? i think i asked this before

THANK YOU... its either allegies or c.diff as 3 times i've had the screams retreat with vanco..steph's post helped to remind me..and again ds has been on zith at 500...(i sure hope we don't have lymes..as this and with aug we need to be on diflucan)... but the hop when he walks...could that be c.diff too...??? i'm asking... so tomorrow...no azith...for at least 2 days.....then maybe 250 every other day...this is just me/like most here playing case manager until i hear something better or get ahold of a doc to guide.... i will increase sach B. and lactovacillius plantaruim 299 as it has been recommended for candida.... maybe i can get vanco again...i did order the oat test and others last week to see where we were...can't get here to soon.... and as per newbie...forget her name...she said doc said too many vancos may make you resistant with abxs ....so maybe i can start with probiotics...till further notice...... i will go to school to see if they can keep him inside till further notice...my kid will not be happy....don't even know if they will do thata....i purposely was not putting him in any sports this year becasue of allergies..and secondly stress... WE WERE SOOOO CLOSE!!! I HATE THIS SOT!!!!!!

was he on vanco and flagyl at the same time????

does that really help....i am freeked...because i cannot tell you how good we were..and i am afraid that we were so much better last winter and then as jan and feb rolled in we got full chorea... he's doing this hopping when he walks....OMG>>>>>> and the screams are coming back.... 80 lbs.... so i gave 200 tonight...i'll give 200 in am doc l thought his d looked low...should i start adding that ... anyone....anything could it be the grapefruit seed extract?????...i was really trying to keep him clean as the allergies came in and i feel like i am loosing already....the screams.....we had maybe one a week as he would do something very exciting...just as of coming home..they are semi constant..... OK...maybe its the azith...500mg daily...it is day 11 at that dose...we had 3 day break just before new dose...and 26 days at 250

Ds has been doing so well.....i was going to post today.... then he came home from school....and his vocals are up and a motor.... we where virtually motor free except in times of stress...he would go hours w/o allergies last week were about 12... the quercitin really helped ...giving 100mg in morning and at night... coincidently we decided to have him try a pear.....he cannot eat fruit unless it is processed.... doctor latimer called it a birch allergy....and said he will out grow it?????...well he tries fresh fruit about once a month....well last night and today he at a pear...we peeled it....no itching....not ready to try other stuff yet....but...is it from the steroid...or the quercitin????? NOW back to my question...as my heart is sinking....i'm thinking what the........was it this or that... could it be i gave him 3 drops of grapefruit seed extract this morning.... ds said it was worse after recess...as per last year....allergies....i checked site...ragweed at 77!!!!!!!!!!! what do i do?????? so he is on querctine 100mg am and pm... 1000mg buffered C i just gave him 200mg of quecitne and benedrylllll

Biaxin

in naturopathic medicine there is a reaction similar to a herx called a 'healing crisis'. it is usually attributed to a revving up of the immune system due to the treatment and thus, the body healing kicks in and heals the infection or whatever. the symptoms one feels are the effects of the immune system. my son has been experiencing what i believe to be this reaction -- be it due to his own immune system or release of toxins or whatever -- due to an antiviral we introduced about 8 weeks ago. his integrative MD is certain this is what we are experiencing. sf mom told me a number of weeks ago -- 'you will know' when i asked about a herx. boy, was she right. in the past, i've wondered if we maybe we could be seeing some type of increase in symtpoms due to healing. now, it has at times been a CRISIS. however, it has been a cycling of behaviors. we've seen some things we've never seen -- intense contamination fears resulting in no food or drink intake. and some things with increased intensity --- such as deliberate punching. dh has been worried, but i've seen these behaivors come for a few days and then leave. in the couple of weeks, lasting a week, when eating issues were here, he had a varying fat lip. i was concerned it was an allergic reaction -- his breathing was always fine. DR saw it and said he was confident it was not troublesome and saw it as a good sign. i know it really sounds backwards when you are looking at your child with troublesome symptoms. ds had mouth sores and bumps when first presented with symptoms -- drs all said it was unrelated but i knew it had to be. during these weeks, he's had varying lip bumps and reddness and clearing. a herx is nothing i'd like to experience without a professional to consult and check out what's happening and advise, b/c for us it has at times been intense and troubling. however, i believe now he's pulling out of it and am hopeful we're on a good road. SFMOM -- what did you write recently about white blood cells and red blood cells and their times of regeneration? i can't seem to find it. thanx. So are you saying herxing can take as long as 8-12 weeks? not just a week or 2 also..seems impossible..but could i see a herx reacation from grapefruit seed extract...gave ds 3 drops this morning??

have friends with same pre med experience and attitude... so how can strep cause death, rf, sf, organ failure, heart desease, pandas(that can express in just ocd, tic, rages, mood iablity,etc or any combintion there of) arthritis, psoroisis , while others simply get a sore throat....blah blah blah.. stinken you know whats

from what i understand einsteins' grandson or greatgrandson is a doctor here in GA..treated a neighbor

if i can add this from FOod Matters. there is a video included...mostly talks about HD vitamin C for cancer..but note mental health issues it suggests http://www.foodmatters.tv/_webapp_390055/Did_You_Know_That_Vitamin_C_Can_Treat_Over_30_Major_Diseases

i thought i heard mozart also had some tics... Dan Akroid...had mysterious onset of tics with screaming vocals for several years that just went away one day... someone else brought up HOward hughes

like all of my stories it's a long one..but very well(knock knock)... i really want to do anohter taper to nip this in the bud, we are going on 6 weeks post taper.... but...i really want to get his tonsils out..and will hopefully know this week once ins gets corrected(new Ins)... so if i need to do steroid for that i don't just want to keep shooting this stuff at him... YES..steroids sent yeast over the top....need diflucan...and alot of probiotics..yes worse before better.. the best results were several weeks after ending pred...but i saw improvement while on taper as it is 4 week dose HOPE AND PRAY your son is well too!!!

The bolden statement is the conundrum.... as ds had obvious infections.obvious remission.. the last onset..was not from strep or other bacteria...but myco p....we did not know this till 10 months later when igg was crazy high...he got somewhat better over the 10months..(we also did taurine for a while)..but as allergy season creeped in we went into full chorea and vocals..... when we found myco p was just the start of using abx as no one would prescibe..but again it was at height of allergy season ...and i will repeat..from some of the papers.(though most people do fine with 1 round of abx)..they treat myco p for months with abx.... anyway...maybe the myco went intracelluar...but not until 2-3 different abx..(nothing really changed and so i was ready to go ivig or pex)..then doing the taper to bring his system down could i have hope again... i believe there is a component(not on my sons prior espisodes) to this episode where it went autoimmune... and just like they use steroids for ms, poison ivy, lupus, could his body really even respond to abx..(as i believe it may be now) so to sum it up...some episodes my be purely infectious...some go autoimmune..JMHO

before this current 1 1/2 year old episode...ds would improve 24 hours.almost done in 2 weeks and healed by 4 weeks... if your child has had it long or as severe as my child..it will take a vveerrryyy long time..and possibly rotating and combining abx... for us i would not see any improve with iburpofen as his system was in tooo much of overdrive and the same for abx....since we did the taper..things are much better and i can see the ibuprofren effects...and you may never know cause of infection if its been a while and it cleared...it becomes auto immune, where the system just takes over itself and needs a brake system...If you can find cause..then maybe the abx that is designed for that illness is all you need.... watch the yeast, steroids will send it over the top, abx, clostrida....PROBIOTICS and even with that the Right Types are key.... ds has been on abx for 7 years off and on w/o probiotics and the more i heal his gut the better he his!!!!

can you say h.pilori or pandas.... ok..and lets say we don't call it lymes...call this SOT..as people are feeling bettter and living full lives after long term abx...

didn't read fully...but doc k says up to 4 weeks post....ours was 21 days post on burst... slow improve on month taper with more dramatic results a couple weeks later

JMHO...bursts are a waste...and if going to do pred, do taper to see if you can get lasting results.....but....make sure on abx long enough prior to start...make sure no gut issues...yeast took off on us with that and vocals came in....you may need diflucan with....and probiotics, probiotics, probiotics.... on another theard ...brain damage one...young lady with pandas talks about pulsing with pred..like they would treat lupus or ms....

Also. Doc l put thought about ta for ds in my thought process..but it was her first week back..and didn't readdress the issue and that is why i am in process now of getting panda opinions...and trying to ins approval and new 2 weeks ago...

just skimmed other posts...and not trying to be a poop my ds when not in pandas, would not get pandas symptoms with stomach bugs... and actually,during this long epsisode we are still trying to recover from...ds did have 1 stomach bug at close to onset...and i thought maybe he was healing as his pandas symptoms, i would say, almost completely went away...then once he was done vomiting..24 hrs later..pandas returned..... then last winter i thought we healing again...ds then said he had a bad headache..didn't feel good..i gave him an ibuprofren..and next day(i guess once the bug passed) his syptoms ramped again this was realtively 1 week out from onset...and then once 9 months out But..who am i too say what your child reacts to...AND YOUR DS IS HEALED/ing....i'm gonna hang onto my last statement

not trying to add confusion...but i believe i read..and i don't know where.(i have not read any of the main books)...that a large group of people..not sure where, that eat elk meat... or maybe they were drinking the elk milk(Can i be any less specific about this statement) had an extremely high incidents of lymes...

The more that I've researched, I have to disagree with you and agree more with the above answers. Where are you basing your information from? The inflammation causes the tics and OCD. If the inflammation caused permanent damage, then the treatments such as steroids, IVIG, and plasmapheresis would not put PANDAS symptoms back into remission. Perhaps the same dosage of IVIG may not be as effective in adults as in children but that doesn't mean that another treatment such as pulse steroids or plasmapheresis would have the same results. I thought the reason why long residual symptoms occur has to do with weakness within the blood brain barrier and that kids with PANDAS always have a low level of antibodies being produced against their brain because they have a resistant form of strep hiding somewhere in their body. Cunninghams test shows evidence of these antibodies. i hope you are right, as the permanent damage scares the bajeebers out of me..ds' multiple onsets ..but what part of the test is that...?? i think the test just shows the body in an overstimulated state in these areas...?? i could be wrong... but ds' last onset from a complete remission state, was myco p...i know myco p solely creates pitands... are you saying that myco p activated the strep antibodies??? and ds never healed from the onset 1 1/2 years ago..got better...but when allergy season hit he went into full chorea movements...no strep...

i am sorry to possibly hijack this thread too.. but i need to hear this if it true..ds has had 3 attacks a year from 3-8 1/2 that's roughly 15attacks..and then this one 1 1/2 years ago..he is 10 1/2...OMG..my poor boy... So even though he is so much better than before the taper which ended 38days ago...he is not 100%...i think i could say a solid 80....so do i still procede with the bigs guns... can i still see some healing from the taper....i will say that i can see that ibuprofren does help now...before he was too far gone for it to have any effect...his system, has calmed to were these thing might help.... doc l gave me the impression that the steriod could continue to do work well after it was done..she inclinated 6 months maybe a year....is that realistic...or maybe more like 3 months..seems plausible should i do another taper..as we have slipped some from our best point, about 3 1/2 weeks ago... to get his brain uninflamed and try to control from there..instead of trying to keep quieting it from 15-20% out. include the fact that he was pretty severe..so maybe he needed more than a 4 week taper..5 may have been more the order considering his severity.....does that make sense...i mean if he were in moderate state at the start of the taper,maybe we could have had complete success sooner in and longer lasting is there anything that anyone has experienced that is similar...maybe someone has done this... it may only be a theory, but that is how science starts...and maybe makes sense..just like when an abx isn't working and you have to get another round??

MOm,,,did you have your's cultured... in the long run, are you glad you had yours out? dh still gets strep..as i've said before...so i wonder if it would be worth it for him??? now for ds...he is still young..and a pandas kid...so is it something to do now to hopefully help clear remaining pandas symptoms..and a healthier future...no pos culture in 3yearsish...but upon presentation,.docs would say...yah with his strep history and that throat lets do abx...and we would get complete remission(so maybe some other bacteria...this last onset..the one we are still working on 1 1/2 years..was myco p...... his glands were swollen the day before didn't feel well..but also hight of allergy season

OK... let me get this straight... I applied for out of area coverage for my Blue Cross HMO to cover Dr. B and they said no - because my son is immune deficient and there are local doctors who treat immune deficiency so there was no reason to go see Dr. B. The pediatrician could not mention that Dr. B knows lots about PANDAS because PANDAS is not a disease and there is no diagnostic code... Now tpotter has BCBS and she is told that since they have PANDAS listed in the chart, they cannot cover it because it is a co-diagnosis. Wait... I thought it WASN'T A DIAGNOSIS!! So- what is it, insurance folks - is it a diagnosis or not? Do I have to ask my doctors to NOT note the PANDAS - maybe just list all the symptoms?? yes..unfortunately, until further notice!!!