Fixit

YES, YES, YES!!!! Gosh i wish i could write some of this stuff...but they are the originators and have a better grasp of it.......

well said........ .just because somethng triggered it before doesn't meean that's what's going on now.... .ds ALWAYS remitted completely with abx...then 4 months later new onset with new step......last couple of times completer remit with abx...coulnd't find strep..but gone in 4 weeks...4-5 months later new illness , repeat.....this last time....well i think with puberty and so many streps and illnesses and we went to docs day before this onset as he said he didn't feel good(so ironic)......his body just cant stop fighting..(fighting self) my ds is dx with ts.....but no one listeing to me....and as things got bad i got a perscription for cholindine...and was going to call for somthing more substantial...but my HEART/GUt just wont' let me do it....besides so many bad reposrts on meds(because they are treating symmptons not cause) i just have too many indicatins that the neurot are wrong!!!!! and though my hubby has a head nod and blink..(vairifing neruos take) they don't consider that he may also have aautimmune iissure...(to repeat dh mohter has thyroid/lupus, his borhter has really bad psorisis, his other brother really bad allergies) blah, blah.....

Autoimmune....and then hit bad immune system with something else and things are worse...JMHO I don't know where you live but i would suggest go see Scott SMith in Melbourne FL.... http://www.creationsown.com/index.html

AMEN!!!!!!!!!!!!!

I am very happy with Scott SMith in Melbourne FL ......i startd with a very good consulted with doc k,,then was helped by doc T....and i was wavering between Doc B and Scott for more avenues before i jump to ivig.. as per Stephanie2 and laurajohnsonsmom information...i felt for now it would do me well to get someone as close as possible....Scott does do ivig...we are not there just yet... I tell people i am working with 3 doctors all across the country as i may go back to any and all and would never cross a knowledgeable caring doc off my list.....and Doc b may get a vist also..who knows....especially with ds allergy problems....he may be next on my hit parade....

Taurine is an amino acid...its a supplement i was giving along with other aminos and vitamins

That is a great link...she is one smart cookie to gather all that info and insite back in the ancient days of 1996!!!!

Also, not sure of relevance....my ds was on taurine for 3 months prior to draw...at that time, though not healed he was in a better place... there is a paper from peglem in regards to taurine and cam....my sons results came back 105 at that point... was it the taurine....was he just not as sick...weird thing is at that point he was also produceing an exhorbinatn amount of taurine and docs added more??? (a thought just came to me) or was he just not absorbing it and that's why his taurine level came back hight???? i'm just saying don't add taurine right now

Just real quick ...if you are getting a draw ask to test for Mycoplasma pneumoniae igg and igm and thyroid, tsh, t3,t4 and a cbc panel....instead of one test at a time.... maybe they can put it undera physical and check your cholesteroll...that will cover some other things.... there may be a lot more tests...get these easy ones out of the way... get a lymes form igenex good luck!!!

I'm glad i rechecked the thread...i was trying to step back a little I AM so SORRY if I made you feel bad...truly..... I understand wanting to completely run away... this moring my husband was calling me an Ostrich......i litterally try to hide sometimes knowingly and sometimes uncosciously SO SORRY!!!!! NO one can walk in anyone's shoes and get the full extent of everyone's experience Typeing can definietly be misconstrude...i was trying to be supportive...came out wrong...i should have typed more on that reply Again My appologies!!!!!!!! I feel terrible....

i know this dosen't help...and i didn't get to read the other replies completely... but i also wonder if her hands are tied.... there are politics everywhere....and though originally she may have been gung ho.....maybe after consulting with peirs or the practice...she may have gotten some pressure...and if things are going better then with a lighter heart she can let you go a little and cover herself... and there the loosing the liscense and liablitily.... look at the video from BEWELL i think ...where the lymes guy had his liscense suspended or taken away... (&%))__))*TR$#$%()_)(^^%%$&( Stinken )(*$%&(_)_)&$#@@$%& ............ it may not be all her fault you need to forward the link on the 1918 paper and someone mentioned how things changed once Frued(go figure) seperated the mind from the rest of the body..

why does everyone here type gooder than me.....with all the good explanations i echo peglem's opinion

just thought i'd post this Nexium and Prevacid http://www.cnn.com/2010/HEALTH/05/10/heart...x.html?hpt=Sbin

OH..I Get it...I Get It!!!

The sadder part that your son is in there!!!!...ANd he can't find a way to help himself or help you help himself. In jenny mcarthies book...she asked her kid something like.."why didn't you talk before?"...and he said "i couldn't find the words""" IT IS TRULY TERRIBLE to be essentially trapped in your own body!!!!

you type stuff better than me

i am not a doc....but an explanation that's been posted is,,,that pit/pan is like asthamu...once you have asthma you always have it....once the attach starts your body can't stop it on its own...doc t so to me...even if the numbers go down, you may have cleared the infection, but the body is still in overdrive.... or another is..you child is in a car that always teeter at the top of a hill ...you tapped on the gas peddle(anything can now be the thing that taps it), and the car starts rolling...problem is you have no brakes!!! That one was Scott SMiths.. ANd this has been my concern with my ds...I KNOW!!!!!! he was sick again when it started..but now the trigger has changed...and maybe the trigger got cleard up and i'm just left with this asthmatic rolling car..... (though now some may confirm what i say with ds new test results) but i got to love Doc K in he said to me it doesn't matter what your tests are..you gave me all the information oh and some of the moms i talked to on the phone supported me too

I like to type the AMEN!!! button...more spiritual, with flavor

Again JMHO...its all pandas/pitands...now go find the trigger...(i hope i don't sound mean, that is not my intension) allergies, myco p, lymes ,crhones, ceiliacs, strep, milk, foods, shampoos, chorine, herpes, ebv, <fungi, yeast, bacteria overgrowth>. check the teeth, sinuses, ears, throat,private areas, parasites.....the list goes on......and it could well be a combo.. ps there is a book on here about thing to look for that is a great reference...i think natural treatments /causes for TS it's in my room somewhere

Please just let him scream...imagine how he feels about it already!! i don't think at six he has much control yet,,,and if he has any don't waste it at home... Before you start adding things, if i could suggest you get some tests done on yeast, fungi and bacteria...and i think that would start and when you get these done hopefully you have someone to guide you would be critiacal...i found it hard on my own and feel better in the hands of someone i trust.... i think chemar and caryn are very good resources to maybe start guiding you...... i'm trying to not look at the board so much...but i had to just give support for the little guy.. Have a great mother's day..!!

Pete...i am supposed to taking break from the board ,,,but i'm a mom...soooooo i haven't read all the replies ...i will later... But JMHO..the more i know, and the more that OLD papers like the one Vickie just posted from 1918..... ITS ALL PANDAS/PITANDS..(there are a few odd things like brain injury and tmj problems).the problem is finding i guess what may have triggered you ,,,if thats possible... but from current info you can gather, and tests....find what the right and the long(hopefully not)journey is to your recovery(everyon here is slightly different)!!!!!! As a mom, maybe your mom can help you read through all this stuff and get you started...and it would be great if you can continually discuss this with her anyway becasue 2 heads are better than 1..... There are several web sites with addditional info and several docs too.... i will check back later...but i'm sure you'll get some great leads here while i attempt to take a break!!!!(i'm not the smart one anyway!!!)

the poem's a good analogy!!! Yes..I know. But you are on to something. We are building the ship as we sail it!! http://poetbabble.tumblr.com/post/19743102...p-as-we-sail-it I think you are adding an important piece to the ship.

i agree, 1 in 700 dose not make for a great indicator...i just can't make sense of anything anymore and didn't know if i was missing something other than we don't know which directin to go, but that allergies seem to play a big roll for all of us i think i'm going to take the weekend off

I didn't get the new anti neurols back yet...the others were normal range i have not gotten a postive strep culture in more than 2 years maybe 2 1/2...but let me explain we would get strep, tic, abx, complete remsiison...8 or so times... we would get an episode about 3 times a year, i don't think there was ever one , but mayb once, in the summer since about 7 1/2-8 with new episodes, we would go to docs, ds is presenting with swollen glands, bad looking throat and even though quick culture neg, i would get abx do to sons past strep prone history...and as usual..10-14 days abx..i always thought i could see a softening 24 hours and a real drop 1-2 weeks, gone 4 weeks later. i never had titers done till this year, onset this time was 4/6/09,,,we have been on the search ever since as we can not find strep, no doc would give us abx.... in the mean time i've tried many things, i just can't listen to neuro's and peds when i've mentioned this correlation more than a dozen times over his life with ds getting sick and tics and no correlatoin (ps we saw a doc on 4/5/09 as ds said he didn't feel good, doc did see swollen glands, etc, but no abx as quick strep was neg and i was ok with that as ds wasn't ticcing,,,but as all of you i was causious when he said he had lumps in his throat) next morning he wakes up ticcinn!!! not till per doc k(then he went MIA) did we find myco p was very high and maybe that was his trigger a year ago.... the day ds started the pollen count was the highest on record till this year!!! or maybe it was something else...and the more i know the more i realize that for ds it can now be anything!!! especially the the fact that the last 2 years the strep tests were neg....Or is the strep hiding like myco p and hide in any organ, and we just do have that kind of medical information yet.. yes faith...ds was much better back then...not normal, but i long for those days... so i am going out on a limb and saying if you get anything above 100 something is not right...and even at that maybe the test is only a double confirmation... YOU have to know your kid and presentatoin like doc k says... PS ds has not been ill during this ramp up...only that pollen count has gone through the roof... and we started a abx protocal with doc t in feb after myco results....I MAY HAVE some other correlaton to add to this in a couopole of days

Good find on the taurine!!!! So i think maybe, its part of a puzzle for testing results and maybe treatment.... we were on taurine for a good 3 months...also per my sons labs it looked like he was already producing alot of taurine... so based on what the other readings were( i gueess) they decided to add more.... I wonder if he is producing alot now, or if his body got tired and can't produce as much??? I'm just so tired of this...including the paperwork side....because i guess i'll have to go back to alverez again and let her know i'm the one with the new results, while off of the taurine... my husband asks what i do all day...and i can't tell you.....i wake up, get the kids out, do this..(phone calls, emails, faxes, drs office waiting, digesting info ,<because like i say we are learning and sometimes guideing the docs too>, filling out forms) and then its the next day....it's georgeous here and i cant remember being outside since last year!!!!!