Fixit

O.M.G....when did they video my conference!!

yah..i think it effects reading too!

update.... not feeling well throat still hurts,,ear hurts took him to walk in on friday 12/31/10...had ear infection while amox 800bid put him on amox xr 400 bid, as per panda doc...i don't think that was enough 1/1 ds8 starts slipping and started ticcing again... 1/2 starts running feaver, still congested sinc 12/16/10 neck and throat hurt..large lumps on neck today.just looks and sounds terrible..lumps like rocks go to ped again.... HE has MONO!!!.....i was thinking that earlier today??? the line started faint then came in ..they thought it was gonna be neg ped says...igm's dont show for 2 weeks..but the lump(like a rock, toward back of neck) comes in 5 days...??? so 2 weeks puts us back to when this started with a little vomit on 12/17/10 5 days puts us at a sleep over.... doc says if you have mono ...you are 40-60% more likely to contract STREP!!..co-infections online it is called a the great strep mimicker.... hubby read you can be contagous for 18 months??? i will have to look into that...with all panda kids..we should all get our own appartments.. soo....does he have strep too..or just the fact he had strep 4 weeks prior to the vomit incident?? or do they just bring out each other..or each others antibodies?? ped put him on amox xr 900bid...he said he likes to go high with certain things..and am very glad he gets pandas...will not dose long term..but will dose high out the gate....so at least i have a starting point..and can document actual illnesses doc said no sports or rough housing for 6 weeks as internal organs get enlarged.... oddly i ran into the panda mom i know...who saw swedo for the study 11 years ago...she said her oldest panda kid had mono at 5...he was already panda...and that lump never went away till he had t&a, 2 years later...(i'm glad to hear this now..so i wont go nuts if it wont go and need to pursue TA..sooner than later!!) Steph2 have you looked into mono!! 3boys mom...thank you soooo much...keep it coming...i am somehow keeping it together ...i think it's those prayers are hitting me....maybe i'll duck and it will hit the boys!!!!

depending on when you did the burst, you can see something 4 weeks out.. also...if your child was not bad to start..when imrovemtn comes..it may be more subtle... and slower going... doc l..told me..after we finished our taper..and ds was doiing marvelous..that we could still see progression 3-6 months out...i think assuming no other illnesses... we lost ground..but regained some back

i'm not as advanced as you.... but isn't that why some get relief for tics with mag or b vits...it works on the peripheral nervous system..somewhere down the chain... those supplements would not be doing anything in the basal ganglia or over the bb... or am i still not connecting the dots???

i am dealing with something similar with new panda kid of mine... stuffy..since 12/16..going back to doc today..on amox..and amox xr on the probis....make sure that there are no strep strains..it just seems to be something that might effect some kids...so why bother... it might not bother at first...but maybe after it builds up.... it will say sterp..or say. s.therm...and there are a couple.. it is in most yogurts...so i avoid those now.... it is not in most good belly which is a drink

see..that is a good question and observation...this is why we all post..the brains storm is great... here is a thought...based on me..... when i read with ds overlay..i would say i can see how the glare or contrast is cut down... on the other hand..i will agree with your ds.... when things are PRINTED on color..i feel i can't read it was well either..maybe the ink blurs a little.. .as they are printed onto the color, but black on white keeps the edges crisp.. and i wonder if i feel the same on glossy paper ie a magazine vs recycled flat paper.. ie i find newspapers less straining on the eye this is all in hind site as i think about my reading ...what i avoid reading in waiting rooms and that i've had the opportunity to read with the overlay these are all just subtle differnces i've noticed... why don't you just do a little reading yourself...a mag and then a newspaper..see if you notice the little differences

when i put ds 80bl on zith it is at 250... i don't think that was enough...after i took him off and put back on...i started at 250...pulsed upt to500 for a week and then back down....and the then off for a week... it's a little bit of my own rythm on this at the moment...as ds has been on so many abx his life...his gut is in jeopardy at any moment... i found this with some other stuff i am doing(hd vit c and (parasite cleanse which also deals with candida at same time..will post this later)) seems to be good for him and then the week off, i think is good for his belly..i tried to time week off with week off from school... and as per docs and pharamist i talked to...zith lasts for a week in system... i think it would be ok short term...but maybe you can get someone to write a script for 375, for your higher dose.... also i heard you can break zith pills..not time released....

ps..on a bad note... they would not let him do state testing with overlay...you know ..the fill in the dot tests... he would need special notes from every doctor and probably some eip or 504...which i still can't get.... he is doing well and based on that, i 'm having a hard time getting approval...(and mostly doesn't need it...but on occasion when he ramps...i would like it) its funny ..this public school he attends, can think outside the box...finding things like overlays and providing them.. but i guess they have to follow state laws... they would let him use it for math if he wanted too ...but his math is great.... and they would let him use it for any other areas he needed...

Luckily, the school provided it for him both years and sent him one for home, which i kept in a plastic sleeve.. they where kind enough to replace his..he was very rought on them i don't know if it like a report card... do you know how the new folders, the kind you buy at target or walmart...the plastic kind they have now..and some are opeak...and some are more tans lucent... it's translucent...almost the size of a peice of paper....not 8x10 though..just measured, its 5 1/2x8 so it would fit in a smaller paperback i guess... i offered to buy them, when ds destroyed his... i have to go to the school tomorrow..to talk about ds8.. i will try to talk to the teacher to ask how we can purchase them i did just search it...i see some that look similar.. Crossbow Education..... my ds was a dark red..... i would start with the main colors ..ie blue, red, yellow, orange, green,...before trying the other colors..it said 5 for $27..

not sure if this helps or is related... ds need an overlay...they found his tracking was off..(this little older school and some forward teachers who researched this)...different kids need different colors..(try to make sure he doesn't jsut pick his favorite color at the time) well it was magical.. instaed of reading......run....jane....run... once the overlay was on ( a clear colored film)..he could read run jane run...the fluentcys was great..... one theory is the color cuts the glare...black ink on white paper has a glare..especially with the lights at school..i put the overlay on almost immediately felt my eyes relax... and then the specific color was something else with the kids brain..... he doesn't need it now..he did use it for almost 2 years... this may be connected...when this episode hit more than a year ago.(about a year or 2 past when overlay was needed) .i did the brain balance thing for him... one of the exerecses was with they eyes...holding someting..keeping head still. and tracking it...inclduing toward your nose and pulling way back...and then making the image single and making it double it was distrubing to watch his eyes...sometimes they would tic...but not much...or the they would jump back the other direction...or he might say it would hurt... i don't know if they are connected....to each other ... i definitly wonder about their connection to pandas...as it seemed to help again in a different way...(brain balance centers..deal iwth autism..ocd and tics..not sure on their record for the last 2 ..i think he was dong better at end..but i heard alot of good with their adhd results)

Ok steph..went back and read your other post... i can only base this on ds10... even though he would only get a 10 day cours of abx..all the tics didn't go away until 4 full weeks.... maybe they did better the first couple of times...but as he got older and another infection...at the end of the course there were still things left..that went away in a couple more weeks...and rememeber, no one would hear me speak about pandas...so you are ahead in that term... maybe its just a one day burst..which, i may have seen with ds a couple of times also..but can't really remember...and you will continue your healing path!!! i would wait on the steriod for another week or 2....jmho

AARRRGGGGHHHHH....That is my question exactly!!!!! Steph ..i am right behind you...i just had me checked.i am not carrier..dh just had tonsils out 5days ago... ds10 is holding well(i hope to talk about him in the near future..but we shall see..i guess) ds8 has relapsed...and the one i am bent on getting 100%..we are not far into this..and i believe i can catch it!!! remember 11/11 he had strep...came crying off the bus..do abx, fine(at this time i still think non-panda kid) 12/17 throws up in moring..congested next several days under the weather evening of 12/21..i think i see tic.... 12/22..i know its a tic..go to doc..glands swollen, throat hurts..congestion..strep neg....doc gives me amox 800mg, as he undertands pandas sort of,,asks me to wait.. i post here because i know better and board helps me.... ...(they call a couple days later..say culture is neg too..but i started the abx..and by the time the call came in, he was pretty close to 100%) 12/29...tic gone!!!! 12/30 says ear hurts,,,still congested.. 12/31..go to walk in..he has an ear infection..(while on amox800mg bid, still 2 days to go).... they give me script for azith..i'm thinking yah...thats the one i want panda doc orders amox xr 400mg bid...so i go with that... 1/1/11 says ear feels a little better.but throat still hurts.still congested..he's doing spit bubbles(could just be doing kid stuff) Today 1/2/11 says throat still hurts...congested, looks like &**&^((...i see a couple spit bubbles neck hurts...doesn't feel right around 2pm check temp..slightle elevated...giv ibup...100mg... hubby give him 100 more at 6pm..... tics start!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! since he is new to tics(but sees what he brother goes through)..i ask ..is it a tic..since he couldn't really describe it before....he says ..yes and its pretty annoying i just gave him 200 more for bed...but i am done..... it seems like with ds10 once i give the ibf it lets the tics through..... maybe he just needed more???? should i get the script for azith ??? should i do both at the same time??? is the amox xr not high enough...??? why is he still congested since 12/16???? IS THERE SOMETHING ..going around that just wont quit..but doesn't show up on tests... i was going to keep him home tomorrow..just based on how he felt earlier in the day...but luckily..i guess there is no school tomorrow any thoughts...i am going back to ped tomorrow...to tell him details and look at sons swollen glands and lump on neck.... and try to really get him on board... going to call panda doc back too ps...started ds3 on abx also to get everyone on the same page..and i he seems more clingy than he should... 2days in..he just seems a little more flexible and compliant..(he showed tics in aug and sept of this year)... i said to him, just a bit ago...thank you ds for being so good today..i am proud of you...he says..MOMMY..I am happy!!like duh..is what he meant to say... (he swings some between being just a great kid, ...to clingy, bossy,,,not that one type stuff)

the response/reaction from the steroid may lay several weeks out...our first one was 3 weeks post on burst...only lasted about 4 days on taper... i think it seemed better after a week ..a little regression then better again...a little regression then better etc...sawtooth response to which continued past taper to "almost" 100%...did not maintain fullnes of it but held most of it

found it.. http://www.latitudes.org/forums/index.php?showtopic=11403&start=0&p=95871&hl=cunningham&fromsearch=1entry95871 soo..it seems like they raised the range.....and it may be considered iffy...if below 155??? affirmative if above...?? to me.....cam is marking an infection....to me...if it is above normal ie 85-95....something is going on....i don't think that number is going to indicate if YOUR child will react with a panda/pitand display.... if your child exhibits any of the conditions...to me...that is panda pitands...the numbers will not tell if your child has the condition...it will only tell you if your child is ill...clinical presentation tells you if it is pit/pans...JMHO since they cant seem to pin it down...and since my ds at 105 still had some mild tics...something was still circulating...so any panda kid at 105 could possibly still be presenting because that is how his body reacts....at 160..he was almost homebound and debilitated..... i don't know that a "normal" child at 160 would present the same way.....or other than sick..ie sore throat, fever... i hope that helps to make my point easier to understand....

Has a doctor told you it must be above 160 to be considered PANDAS? Sorry, I don't quite understand, can you please clarify? Thanks. i recently read a post......that says something to the effect that 130 isn't so relavant anymore the new "pandas" number is closer to or is 160...i believe i read it was in the last week or so..... if i read that wrong i apologize.....i will hunt for it..maybe it was something more direct from cunninghaam.....not trying to put words in mouth....but pretty sure that is what i read recently.... if anyone knows what i'm refering too....please post here...i would like to reread it too...

vickie and colleen...are talking aug or aug xr..... just curious...as i would like to add aug also...but after test and trial...when we tried aug xr hd...it wiped him out and gave him joint pain about a week in..some rash..due to fungal over growth...when we did aug xr and diflucan...he did the whole month wit no problem.. i wonder if we did aug at regualr dose with the zith if that might do the job ...and as long as i kept the high probis...maybe i wouldn't have to do diflucan???? anyone have thoughts on this( we were told when he was 5 it was a reaction to the abx...he was on second round about 21 days in all together, when the pain started and we couldn't get rid of the strep)now know it could have been rf, scarletieena..or the abx wiping out gut....i was not giving probis at that time...(almost 6 years ago)..i think his gut is still messed up from back then!!!!

Just to put 2cents more of mine in.... the cunningham numbers concern me... as ds first came up 105...that is still not normal...the range was considered like 120 or above... so we redrew several months later after getting off taurine and he was really bad...i prayed...just let it be 130..so i can get help(i was afraid his 15 prior...strep, tic, abx, remissions((in that order)) was not going to hold weight)... so then he came up 160.....i thought great... now it has to be 160 or more.... my new panda kid ds8...got strep 6 weeks ago(he has had strep in 5 years though many ear infections)...ds10 ramped, ds8 stil held strong...i'm very happy... well 4 weeks later that ds8 come home with another illness starts to tic 4 days later, as i posted here....got him abx... i did ask him to write his name and some other words...his hand writing has always been impecable...but i cant' say it was much worse (just a littl off)(but he could have been in a rush to play with his new toy)....my handwriting stinks...catholic school with lots of home work has trashed it... i am concerned that kids will be strewn aside if they don't have multiple conditions. yes ds8 always seems more sensitive..but that is him...aaaannnnndddd he is sick...i am a grump when sick... well long story...sorry...ds8 is in remission after 6 days of abx maybe the only pathway that is accessible to my children as a condition of pandas is the motor pathway..and would be diagnosed with ts(of cours ds10 now gets trich off and on...but that maybe that is opening other pathways do to so many expostures)...maybe if you always catch it early... you won't have more than 1 or 2 presentations of the condition i am only putting this out there so not to eliminate anyone till they have had the access to at least trying all protocals to heal their child...wether considered minor or not...this is not pointed at anyone..just want all here to stay open minded and maybe the docs will too!!!!

Emerson..I am so sorry... I'm sure you know...if you ever needed to talk to anyone here..they would gladdly talk to you... I will keep you and your friend in my prayers.

if you have people listening to you.. your getting treatment... your seeing results... i wouldn't... i have now come to personally acknowlege i have 3 panda kids and not just one.... i don't think i will test them.. the fact that they repsonded to abx, is good enough for me...and i hope going forward for the docs... so if they all go autoimmune...i dont think the test is necessary.... document...document....

Update... one week since starting abx....tics ...bye bye..for ds8.... (if they are peeking out.i question if a real tic..so that is good) i thought he was clear yesterday..but didn't see him much as i've been busy..dh had tonsils out yesterday...he had some complications..details later...ok today thanks for the support...and confirmations cristo...thanks for the lovely post gettting all 3 and hubby to pandas doc asap

you need some probiotics in there...with the azith and nytatin you are leaving too much room for other things to take over ie..clostridia..it will help fill in the spaces those 2 are taking up...also charcoal absorbs everying including good stuff.. i'm not sure if nystatin reacts the same as diflucan...but sach billardi will give die off effect with that...so try a different probiotic..bifudus are good... i see you on you schedule you can give some at bedtime ...which is the best time...but you may want to try to give some at 3pm with the nystatin..which is after the abx... just some places that i would try to fit it in

i don't have thoughts on mechanism....but similarly....since ds has been in this year+ episode...if he gets ie stomach bug..his tics are non-existant...but he would not go panda with stomach bug in past either... i wonder if the bug itself...like some of the things i read about, people who purposely give themselve certain parasites to heal some autoimmune deseases..(the toxins the parasites give off do something to the immune system)...for me..that seems to be more of the answere....it just keeps coming back to that...no one here has ever replied to the couple of posts i've put out about them ..i can't seem to put it not eating foods for my ds....trust me...we did gf/cf for more than 3 months and were pretty much just drinking water as we tried to find foods we liked and were almost starving for awhile just like last year...i thought we had it....almost no tics for one day(in december over christmas)...he then said mom..my head really hurts...do i have to sled anymore(visiting in va) i said no so i gave him some ibuprofren...he was a little more active and wanted to do somemore runs...then the next day the tics were back...

cristo...(i am really busy at the moment)...but i saw your post on the ts board... i am glad you are here and many will help you with your questions ..i was going to tell you to check out the pit/pan board!!!

fyi.....wanted to post this as it could help other adulst... i've been told by the ent office and one of our panda docs.... that as you get older, there may not be atnoid tissue there at all...or it might be sooooo small.... so i will just review with ent pre-op...and he will probably evalute once in there.... thanks for the posts... please keep my hubby in thoughts tomorrow..thanks