Fixit

Wendy as usual..good stuff... can you clarify..your son was mostly 100% tic free for several weeks...added alinia..and things came back with a roar...(for how long) and now things have settled ...to what percentage 80-90% better from worst herx point??? i just don't think i can handle herxing at this point.....and did i ever mention that i truly done't enjoy rollercoasters....

here's the dilema...its the beginning of the school year...how many cases will actully be in the class you may want to pull him for.... you probably know the sensitivity scale of your kid..or maybe that is what we ar figuring out... i would up abx for 3 days till you get more or no confirmaion.. i don't know if yours is twice a day..i would up it tonight..

when i arranged apt with doc l it was very bad..teache even notified me she was afraid he was going to have a seizure...he responded miraclouisly to the taper...we did do diflucan with it...(did burst in spring..no hold) i was ready to go at the drop of a hat... then it got so good..i almost want to say we had 2 days with nothing going on..then it started to come back..he had started school...by the second week the teachers were calling me concerned.....then we got better again, the 3rd week...not to our best point the week or 2 prior but better than second week this is begining of 4th week..i started azith back yesterday to have it in his system 24hrs prior i just wish i have the lab orders here..by the time i call tomorrow..and then i get it and then i send it in it will be 2 weeks..... OH..i am meeting with a Pandas friendly pediatricn tomorrow.....he's aided a new friend of my for years with her kids...so maybe i can convince him to order some tests???

just another mom dittoing Meg

thanks for the last part..i hope so... i kinda feel like i am in circle with the vocal thing..i think when i started the biaxin and the steroid at the same time w/o haveing been on abx in more than a year...(and i know from years ago i did the spit test with ds..as i had heard that candida can cause tics.) i didnt know that steroids also increases yeast over growth... i also think the gut is probably one of the hardest things to right once messed up... i am not a patient person to begin with!!! oh...plus checked the allergy site...ragweed creeping up...i really have to decide about allergy shot... i think mucus is giving him a slight air push/throat clear tic ARRRGGGHHHHHHH!!!!!!!!!!!!! so you think once the zith get's back to what ever level..it will be ok no stool in a while...i guess we are going back that way again...vanco has cleared the screech 3 timess.... would like to just give him a break....try to catch this early i would like any other thoughts too

did i mention that all those gross motors are gone...watch me eat my words...they have been for a while..it's the shirt chew or pull..i really see it work to hide/surpress the vocal...and if he does head twist..it needs to be set off by hair in his eyes...nothing for hours though...its the dang, nab, gone, rotten, annoying, stinken,slow death of me, vocals!!!!! here's the other part..besides not being able to handle much emotionally right now... from what i've heard for some.. is that after ivig they have things they didn't have before..tics, vocals, ocd.. i don't know if i could live with my self if i cleared his tics to get ocd... in a way he is comfortable witht the tics as he knows what they are...this onset was 9 and is 10 1/2..and probably can't remember much time w/o them...also as, he's had tics with strep off and on for 7 years... he is FUNNY, smart, great insight, amazing self confidence....though he is very happy the motors are gone.. what if he starts raging, or has fears...after ivig's... i've also communicated with some from the ts board that they know people who had ts and it went away only to be replaced with ocd.......for some ts just went away(interesting huh ) having some difficutly recontacting doc L...will try again tomorrow..plus 2 other phone consults in the wings... and i dont know if i 'm even ready to do pex..should that still be possible....i'm scared...that's a big procedure too....i just want to give him a magic pill...or make steroids not so horrible...or maybe if pex is so great..like someone said..do it and then leave the port in and have a drive through system....

what i wrote before..ruffly.... took ds off 25o mg azith for 3 days to give tummy abreak after 26 days...we were seeing slow healing..i think on last night of break i gave him 10 bil of Lactobacillus plantarum 299v.... the next morning a bit more rasberries...that same morning i reintroduced 500 mg of aztih...my plan was for 3 days...(i noticed the rasberries were up before abx given)...that was sunday morning... today monday...i did not give the lacto..plant(which i heard was good for candida)..as i wasn't sure if that was the cause...or if it were herxing...which again i am not ready for.....was thinking of every 3rd day... in short..dh and ds do show strings with spit test..dh is disgusting...ds isnt that bad but there.... i think the the screeches i just heard are from the double zith(yesterday and today)....my plan wsa to go 3 days...but may drop back down tomorrow

i think i just deleted everything i wrote prior to this.when i posted above.... omg...this is killing me..... are vocals the hardest of the tics to get rid of..... i don't know if i can do ivig.....i don't think i am in a place where i can handle turning back of pages or upping of symptoms..... i'm watching him.....the shirt chew it to not vocal... when ds was on hd aug...he had to be on diflucan too..because it just wipes out everything in his system..and gives him joint pain other wise

do keep us posted....soooo great your dd is doing so well 1 year out...1 ivig right!?

Ok ...ds is home from school..... his vocal of late has been a spit take sound(rasberries) well he just let out some screeches....i can't take it... i think that is from double azith yesterday and today..... any thoughts anyone.... i gave 3 table spoons of bentonite when he came home from school..before i heard the screech. did someone say that the ivig cleared up the gut issues too... again..his motors are super mild...if at all..the shirt chew.i think is to hide the vocal... ok..just let out a grunt that sounded like he got punched in the gut.....

yes..heard the same thing... will let worride d.speak to clarify.. but had 2-3 ivigs...but left with new vocal as never before.. changed to HD aug..went away and believe still on hd aug..and in remission for some time now... and then there is saving sammy....i thought that super higd dose was longer than a year maybe 2 then dropped again the ps's...it's also possible the vocals are do to digestive issues... once these kids get triggered..it seems that anything can hyper sensitize their systemm.... so you or i may have a slight digestion problem..not kknow it..or get some traditional reaction. for these kids it becomes another type of toxin to them... more thougths on this later..gtg...my current, last thing is a vocal and i have some qustions too...will ask later

of couse it panda-ora's

if you can give abx at same time... abx and supp i morning. after school... charcoal..bentonite night time...other supps that are best for night..and have been told that most digestion happens at night and to give probi's then...

My son had myco p also...just tics..that is ds presentation to infections maybe for some they present different symptoms with different illnesses..idk PS ..this is also when it went into his legs...and there are articles about myco p and restless legs

havent't read the posts... but i am sorry you are going through this..essentially alone... dh just took new job past monday..and though we may have a smidge more coming in and ins is CIGNA YAYA!!!! i too will be alone again during the week....fighting about homework, bedtime, dinner, snacks, drinks, friends,clothes, chores,sibling fighting, crying,,,terrible..... It is awesome about the school...that will be huge and be really good for you going forward!!!!! Hang tuff steph!!!

http://answers.google.com/answers/threadview/id/469386.html http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf http://www.ncbi.nlm.nih.gov/pmc/articles/PMC523564/pdf/0068-03.pdf fun fact 5 is good http://s99.middlebury.edu/BI330A/projects/Howard/Mpneumoniae.html still looking for others i have somewhere

I keep hearing the myco p and temperment too.. I am 100% sure the last(current still)onset 4/6/09 was from myco P..ds just ticced/s more... though as when you feel better you are less grouchey..... To continue..my thought is even though ds had extremely high myc p igg titers 1 year after onset...i believe there are papers out there that state that mycp can hide in specific organs/spinal fluid...so maybe not on abx long enough like some papers state 6 months..i will try to find them again...i think buster was the original finder of such info or was it pandasdenmark PS i am not dismissing what parents see when they add/change anything

Melanie...so sorry...this is tuff...and you are tuff... maybe take that break from the current ivig method... you said doc b thought a different program might be better...maybe you need to consider that option.. it's terrible...maybe you need a differnt abx too... i'm gonna through out a couple thoughts...some are out there TSO-helminthic therapy(or check for other worms that shouldn't be there) acupuncture..there is magic one outside of philly in nj..i wanted to check out..weird a freind of mines has been talking about this guy for years..than a mom on the ts board brings him up not sure if you've tried gfcf diet... there is a "brain balance" progam i used at the onset of this..and he got better but not cured and they were the people that put ds on taurine the Dan doc's have all types of little tricks...and Ldn wakes these kids up with blue birds on their shoulders... the tmj thing i also did might do something(i know moms who swear by it)..but mostly they relate that to tics...

again..i'm not the parent...can you take her off the add med..and see if the abx adjusts some of the add stuff ps..in combination..no carbs in morning..high protein..NO dyes, ever..if she is not bad maybe this would be enough to take edge off

o my Lord....i just want to cry...how many times ds has complained of a sore neck(off and on for as long as i can remember...i always asked if he felt ok other wise and he would say yes.. what did i do????? we've tried neck pillows...chiropractors...as some of the times he wasn't in an episode.... CR#P!!!!

gosh..i'm not the parent..but 1 week post ivig...i would say..skip the homework completely... at about 7 it would ds and i more than an 1 1/2hrs of fighting to get homework done..dh traveled..and it was all me... about 2-3 months in..spoke with teacher..(we have such a wonderful school...just met with new teacher yester.so cool...more later(but cant get 504 as he excels in all classes))...and she said what ever is not done after 20 minutes don't worry about it...took such a load off...and after a month, once we stopped battleing he kinda just came round...got more and more done in that time limit..so by end took 30 min to do all homework... keep in mind it's the 1,2n grade...he can catch up later... just try to take something off your plate

yes..the pandora's box

The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense. I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though. well the reallity is ts and ocd is considered rare....so if you have a doc who only sees 1 patient...and another doc has maybe 2..its hard to put the links together....now if the docs listened to me 7 years ago when i put strep and tics together...maybe asked a few other docs...maybe we'd be 5-7 years farther along...(but i'm a real people watcher and picked up quickly on the link)(transient tic= mild infection, body recovers...just a thought) and i know before i had kids...and would go to NY..and see the homeless...i always feel like they were ill..not mentally, more infected,,encepholitis..i still hold to that too!! it's all good(not really, kinda su$$s) but we are getting there

i dont know how long ago that thought was made..but with light of myco p and lymes.. i bet the number is higher..and as more illnesses are linked...who knows....i know people with celiacs can express with autism or pan/pits(tics/ocd)

looking back...do you think having the tonsils out was a mistake... do you know how they looked or were they harbroing anything... curious...as we are consider A & T also...