Fixit

i dont' know if this answers your quesiton.... i have not gotten a"postivie strep reading" in a couple of years.... with first camk in at 105 ds condition was not as bad as second draw 160.(though the low reading on the first to me does not mean its not pandas) ..note he was on taurine just before 1st draw...(doc k didn't care what the cam was) so i don't know, think strep is the current problem for my boy...something else can raise the cam level I wonder if the camk number is just a marker for any inflammation or autoimmune problem.... PS...weird thing is, until last onset 4/6/09 ds would completely remit with abx in 4 weeks

Hi Faith i'm a scardy cat too...i know what i have...what will i get.....but that is almost the every day, every hour....and i question what is improvement or was is so bad that now bad looks good??? and i appreciate you asking some of the hard questions on the item i put in bold....i thnk that is the case why dock thinks ivig is..in the long run..the only answer for most... ds did in january come up positve for myco p igg....his original cam in nov09 was only 105(still above normal)...(he was taking taurine at the time).... i think ds mcyo number is coming down...or gone.. But......ds cam is now 160...his urinary neoptrens were 980 something (an inflammation marker that has been related to autism, ms, hiv....) so i am wondering if the cam and the urinary should be taken together...as autoimmune/inflammation marker.... his hippuric acid was high too ...indicating something bacterial or fungal going on in the gut...... I do not think i am fighting an infection at this point...unless it is in his gut and/or its all intestinal at this time..... i do think it is autoimmune, as the numbers indicate, that it is now just fighting itself..... doc t had a good annalgy...its like asthma....something triggers the attac(cats, dust) then the body can't stop unless you take an inhaler or something... smith said something like..we (our bodies)can drive at the speed limit and accelerate and come back down....they are already going 85, something hit thier sytem and they go 110 and maybe just keeps accelerating...and maybe goes back to 85 maybe...and maybe no brakes at all...thing is to get it back to the speed limit... Does that make any sense? I am so close to pulling the trigger on ivig...the pieces are coming to gether in my small mind....the last flare was pretty bad.... scott smith does have some tricks up his sleeve and some tests to run... that last flare may have been after i realized i may have messed up his meds...and had to essentially start over another friend of mine (very smart) said that if there is a virus or somehing else they may have certain life cycles....i think ds may have something with a 12 day cycle...not sure so maybe just like with ivig,after each relapse a better base is set, i hope!!!

Hi Wendy.. i know we've spoken before and sorry if all these are repeat questions....when i get a flare over here...all the info in my head seems to fly out the window...gets comp;etey erased..and i feel like i have to start anew.... we had a very bad flare about 10 days ago..and i'm steel reeling.... when you say weeks 9-14..are you saying that 5 week period...or week 9 then week 14? oh and i'm sorry that was after the the 3rd treatment....was there any progress with the first or second ivig? if you don't mind ...at what intervals did you have 2nd and 3rd ivig...ie..2nd one was 3 months post 1st? as you probably remember...(your brain works better than mine. ) ..my son is a ticcer also..what ocd(more compulsioney) there is, is only 10%ish, some sensory stuff, self stimulation(i think that may be related to anxiety now that i know more)....he recently told me he always feels anxious.... Is ocd now the problem....how bad did the ocd get? how long did he hit his head banging last? finally for now...you are about 6 months post ivig 3.....when was your first ivig??? Thanks for sharing all your info Wendy!!!!

if i had to guess on my own experience....above normal mean but not way up.... and IMHO...it doesnt' matter ..it just gives more of a sense of validation for your brain to make you feel not crazy... something is effecting him and it may take years, (until more of the medical community steps up) to find out what. don't forget besides pits and pans there is celiacs, parasites, lymes, mandibualr/vestibular misalienment...etc.,blah, blah, blah

I don't have to deal with this, but at sleep overs your child is not alone...there are other kids in the room.... sometimes i wonder if we are expecting too much of all kids in general....having your own room is a luxury of 21st century..... in many cultures everyone sleeps in the same room.... that being said....these orignal symptoms do turn into hapbits....so therapry and slow w/draw may be the solution!!!!

We only figured the anitfungal through tiral and error.... do you think ivig might be an option for you son....seems like it might be as per burst....

when my son started biaxin...he also developed thrush.. and i believe the is the crux of his vocals...as he started a high pitch screech 3 days into the dose when we added augmentin...about 10 days into it(still doing biaxin) he developed muscle joint pain what happens is the abx wipe out everything and let the fungus take over and it get into muscles etc so we restated aug with diflucan ....no muscle pain...still had screech we added vanco screech went away..... we had a couple of days with nytatin w/o coverage of vanco and screech came back we have restared vanco and diflucan.,,screech gone...but still have other vocals...waiting....... i'm starting to understand more and more how digestion is important in this...how it is the other brain.... i think phasmid from the board mentioned something about the vagus nerve???? it's somewhere in the the stomach or intestines and goes right to the brain????? i think

Ditto...from me too

That's very interesting..

Thanks as always SF 1)i too wanted to ask about kids just on abx....when you say improving...50% better 80%..... 2)have you not done ivig for them because of age or because of continued improvement with abx?? how long have they been on abx??? when ds would get strep...and then tic...once we started abx i could see a change in 24 hours...then by the end of abx 10-14 days, 50% or more recoverd...by end of 4-5th week....complete remission.....we have done this at least 8 times with positive swab and another 4-6 times with abx and no positve swab... i don't know if i could wait 6 months on abx with out 100% because i was so spoiled i guess.... maybe i could if you are 90% and just trying to get that last bit??? 3) not trying to pry...or a maybe you don't know...or they are waiting for what ever reason.....why isn't PJ being treated...or maybe just between what type of therapy to do next...

Emmily,thanks for the info Glad you are moving along!!! i thought it was good....not exploitiveto me....but i have a better understanding than the general public that it's not just choices , there are things happening, chemical, be it from infection or tramatic event that have changed my concern is, for codi ..if they clear up any infection or realize that it might be autoimmune overdrive that needs to addressed then they might consider him a failure or untreatable or put him on other meds that aren't treating the problem treat the real underlying problem first and do physical therapy later....

by the way ..... how are you doing????? are you still seeing some slow progress??? on abx indefinitely?????? out of curiousity....does that mean he just doesn't know...4 years.....rest of your life????

even posting to you i keep loosing what i type... i checked out vh1 i don't blog or tweet... this would be a good opportunity for all of us to put something out there for him.. help codi.and spread the word it's going to take me an hour to figure out how to post over there.... maybe peglem, or buster or mrs buster..or anyone with some good research info to add would be a good addition there are a lot of you...you know who you are... i will attempt to put some trivial opinios out there....once i figure it out...no computer savvy

here is related article http://www.cnn.com/2010/HEALTH/06/01/backp...dex.html?hpt=C2

there is an ocd series...treating people with behavioral theorpy...... the others i think had some tramatic event they young one, Codi...said he just woke up like this one day....he's 18... i don't know if they will be able to help him....i'm sure this was taped months ago...but .it makes me want to scream. .if he's not cured by the end... how can we get ahold of him..... do we have to wait that long....to find out if it failed....

here's the related article http://www.cnn.com/2010/HEALTH/06/01/backp...dex.html?hpt=C2

well wouldn't that be PITANDS

about every other weekend????? i didn't really put it together till you said that....sssshhhhooooooottttttt the last time it was posted, i forwarded it to my brother in low with terrible psoriasis....(.dh slight tic..a great aunt with very mild ocd.. any correlation )

the last time it was posted, i forwarded it to my brother in low with terrible psoriasis....(.dh slight tic..a great aunt with very mild ocd.. any correlation )

a common problem too is for boys to get more deciplinary action than girls... i would make sure the teacher and the principle address that little girls parents as well.. i don't take no s*&*t !!!! that's sometimes the reason why there are so many prissy girls....screaming as a version of hello....over reacting...too consumed in appearances... it needs to be taken down a notch......sorry venting as a woman who bases things on earned and past history,,,not appearances woman's lib is shot down the tubes....

trying to remember..in the roller coaster over here...also hubby out of town,a 4-5 year old and an infant i don't think ds was in an episode at that time...can't be positive...he would completely remit once strep was gone...though very mild add, very mild sensory.... the rage lasted about on hour, ithink...and the rest of the day was walking on egg shells.....

OK.....when ds had to have oral surgery at 7 1/2-8 .....he was like a wild cat coming out of it....husband out of town..of course... baby at the time is there...nurse had to hold baby...someone got the other kid and i had to restrain ds...and his eyes!!!!!

Even Scott Smith, not trying to put words in his mouth...said tics are the hardest to resolve.... with that being said...if i can just spew my view, one more time... i get concerned that unless there is ocd(which usually manifests more with girls) is present and there is a predominance of tics...some may view 95% tic problem(with a little sensory or a dash of some other super minor issue)as non-pandas....IMHO as no one really know anyway..tics are just a different version of expression of the same problem...some, from what i am just picking up on the last couple of days, just seem to have behavioral problems, some have just light sensitiviey.....and again,IMHO..it is all pit/pans...and this thing will always be a bugger to diagnose, heal, cure, because of the mulitude of expressions and causes.....AND because tics are the hardest,( it seems), to resolve, it may be given up on too early and said to be something else when it is not..... (and the right combo of protocals may take longer and if not done in X time the poor kid is then put on a wrong path) NOt that most of you don't thinkl this way already... it's more for me to voice my opinion and the new comers..and not to get discouraged...

At this onset ds tic was...walk 3 steps, jump in air, both feet hit his behind( like an ice tea commercial)...we had to carry him..he was exhausted...he said it felt like socks were in his legs and they were slipping down and needed to jump to get them back in place.. we were on our first ever trip to disney...immagine carrying your 9 yr old around.... well he showers on his own...but when we got home, he showeres in our room so i clean one less bath....he got underdressed as i walked by and his behind was completely purple!!!!!!!!!! after i picked my jaw up...i ran to get my hubby and started bawling....... how many times and how high and how much energy does it take to do that ps....he does have a 1 arm bandit pull, that slams his arm/elbow down to his side,hip also...that same arm will sometimes just flap....

Me TOO!!....i don't know why...i think that is the combo...doc k may have mentioned it earely on....it seems like you 2 ivigs are needed in general...i think for those with tics that may be the perfect procedure....