Fixit

i wonder if this may help our kids... i wonder if i may mark brain inflamation.... i wonder if it could work in combo with camk levels... i wonder if it is circulating in the blood stream if it would acts the same way that strep, other antibodies effect our kids.... just thinking http://pagingdrgupta.blogs.cnn.com/2010/10/15/military-blood-test-may-detect-mild-brain-injuries/?iref=allsearch

i usually hang out on pandas board..but saw prayers needed...will do also i wonder if inflamation, in general is a problem....on the pan/pit board...sometimes we'll do ibufpren every 3 hours for 3 days to reduce brain inflamation... i wonder if this may be of interest with general circulation inflamation markers???? http://pagingdrgupta.blogs.cnn.com/2010/10/15/military-blood-test-may-detect-mild-brain-injuries/?iref=allsearch

yes ..i would up the probis i like to rotate them every few days or weekly..to make sure getting rounded variety my ds gets screeches...not sure if isolated to yeast or clostridia..it might be the combo or either/or.... 4xs i had to address gut with (knock knock)clearing of these symptoms... long term zith can cause clostridia

this is just a thought.... have you ever tried to do all the pills/supps our kids do..... i take some and my stomach gets upset.....and when my stomach gets upset...which is RARE....i can feel the color leave my face.... so...i would not lay down as soon as i take some of them and for others there might need to be a good base of food..ie rice,crackers....

so it hasn't been a year yet...... but if you made it,,,,to say 18 months..he thinks you are home free!?!?!?!? that would be kinda exciting

the poll doesn't fit right now, so i will answer here...the short polls are tough on complex answers prior onsets caught w/i 2 weeks... abx response in 24hr...remission in 4 weeks... this last onset...was ds 16th onset...to pick a number..he was 9, and i believe it was not strep or other bacteria...but myco p.... receiveed cephelxin 10days at low dose....but did nothing.(wrong abx, wrong dose) could not get anyone to do other or more abx... 11 months later..found myco p....started treatment but nothing.... its been 7 months since starting abx, other protocals...and we are still working on it...

How dare you go and have a life...

mom md started a code list somewhere

tonsilectomy and atnoids removed i don't like to say T&A ..is just seems wrong

Wow..another good news item... AND..it is great she can articulate that she can feel what direction it is heading... THAT alone is huge...if she can now recognize the bettering...maybe you can talk to her about what it feels like, or if can figure out when it be coming back.... So happy!!!! oh..what abx did you put her on and what dose for what weight...thanks

I think you can have only one thing as a presentation to an illness, ie just rages, just tics, just anorexia i think each person has a specific or specific group of presentations to desease, that they are prone to exhibit. now if you stay ill long enough, others presentations might emerge as the body gets tired and the invading germ is winning

OH YEAH!!!!!! So good.... can i ask if your dd had any panda symptoms prior to the onset 4 years ago... ie other smaller periods of pit/pands lasting a month or a few... or other things like bad handwriting..clinginess...rages... and..after the 4th...are you done? ie..will you do them annually to keep her on target.... or this could well be the end??? is there a plan...or just giving it time???? again....SO HAPPY..needed to hear it!!

I've read most of the thread over time..some may not remember every detail...but... part of me agrees...and the other... well tics seem to be the hardest to get to remit..per every doc i've talked to...And maybe that may be more true if your only symptom is tics..ie if you have rages, tics, ocd..tics may be an equal opportunity condition... if you have ocd...it is more treatable, remits, better, faster if you have tics...you need more ivig, time, probably pex and ivig...(it might have to do with the particular pathway being attacked..or the individuals susseptibility) so in that regard .. if pex worked equally on both...but ivig was better for ocd...it would then be that pex is better for tics if that makes sense..and that is not a scientific study...its kinda a summerary of me following the ticcers as a priority....

i think it inappropriate that this parent is there listening.... i would address that with the staff and also ask to find somewhere private to talk...and maybe even roll your eyes toward miss(it's everyone else's kid)... I hope you realize that this mom has some serious issues...not making light...but i truly think she has some problems..... so in the mean time..do your best..as I'm sure you always do..and we all have our bad days..and pray or send good energy her way... you handeled it great..and have every right to vent!!!!!

your mom was there too... i am glad that both of you were able to hear what the doc had to say... and glad you at least found someone close who won't just shrug off pan/pits i am not a doc..but maybe your bipolar, other issues are tied to the illness. when i don't feel good...or hungry.....everyone should be very careful

ok...so..if its viral..could that die off cause congestion...like they say lyme die off might make you congested... ds started ole right after clinda.... we got up to 1000mg 3x a day and the next day he looked like his allergies in the spring... i'm thinking...omg...his fall allergies are now as bad as his spring allergies.. went to docs on wednes..to make sure it wasn't a sinus infec..as he had ta 4 weeks ago tomorrow.... ole was started about 9 days ago...his vocals this week are terrible(i think teacher is getting annoyed)...no motors(knock,knock) but if you know tics...a reverese sensation can trigger the tic... ie..if you have arm tic and you were a tight shirt...your arm tics more... sooo....ds is so congested...when we do pulse with water solution(not netti..it's electronic pulser)...snot just pours out.... he's coughing, hacking, suckking snot..clearing..some grunts like to shoot it out..suck...(i'm trying to say his drainage is triggering these huge vocals...90% of them sound like a cold on over drive) COULD THIS BE HERXING??????? this could last a month??!!!!!??????!!!!!(assuming its the ole kicking some virus BUM and not allergies) If I remember right, yes both kids had some congestion/sneezing/cold symptoms with the start of OLE, but could be coincidence. Definitley crossed my mind that it could be herxing. But they did not have an increase of tics, only an immediate decrease (within 3 days all pandas symptoms gone). I think you need to pray about this one, fixit. Or go with your mommy instinct. I know how much you hate the vocals (ditto) so you have to either see it through for a month or say NO WAY! Maybe wait at least until the congestion is gone...??! I have to give Jenny the credit for leading me to the DAN protocol - it has been a life-saver in our house. Although, our DAN doc admittedly says that PANDAS is their hardest thing to manage. Get this - DS2's autism symptoms were GONE within a month of the protocol. PANDAS? That little pest will stay with us for a long time... some may disagree, but for us autism has been a walk in the park compared to pandas... well ds did have some random motors left....they were to the point(subclinical) i wasn't fixated on them....i haven't seen any in a day or 2....

You're welcome and to complitment that.. it's by GROSSan hydro-pulse..got it from compounding place.. and solutions contains xyltiol you dont have to tilt head, but you definitely want to be over sink!!!!!

ok...so..if its viral..could that die off cause congestion...like they say lyme die off might make you congested... ds started ole right after clinda.... we got up to 1000mg 3x a day and the next day he looked like his allergies in the spring... i'm thinking...omg...his fall allergies are now as bad as his spring allergies.. went to docs on wednes..to make sure it wasn't a sinus infec..as he had ta 4 weeks ago tomorrow.... ole was started about 9 days ago...his vocals this week are terrible(i think teacher is getting annoyed)...no motors(knock,knock) but if you know tics...a reverese sensation can trigger the tic... ie..if you have arm tic and you were a tight shirt...your arm tics more... sooo....ds is so congested...when we do pulse with water solution(not netti..it's electronic pulser)...snot just pours out.... he's coughing, hacking, suckking snot..clearing..some grunts like to shoot it out..suck...(i'm trying to say his drainage is triggering these huge vocals...90% of them sound like a cold on over drive) COULD THIS BE HERXING??????? this could last a month??!!!!!??????!!!!!(assuming its the ole kicking some virus BUM and not allergies)

can i ask what type of doc recommended this... how old is your child....and how long has your child had pit/pans is age the reason for 6-12 months aaaannndddd.... would that be monthly? at what does does your doc think they can get the ins co to pay for this???????????? i love the concept ..makes sense......that is why i fear 1 or 2 ivigs...as it will leave my ds with some other weird.thing and if not..what about relapse several years later..... the continueing care...and the reality of relapse..and getting docs and ins to realize and cover...are concerning

i have 2 minutes and 2 cents ....... ds is 95% ticcer..... burst was nice in that we had 4 days of subclinical stuff...and then rebouded back to prior point... BUT THE TAPER....so nice...we got to 85-95% improved.... loast but 60% of that... we just had a ta and reclaimed alot of that...we are back to about 75-85%.from worst point

We had this topic in this forum not too long ago. search through topic Low Dose Naltrexone any one have luck?? http://www.latitudes.org/forums/index.php?showtopic=10106&st=0&p=84955&fromsearch=1entry84955 I got so much information and help from this forum and I hope this forum will be as helpful to you as it has been to me. welcome currently retrying it...had to go off a couple of times..never been more than a month..but i hear it may take a few to get real/antiinflamatory /modulating effects

i saw you here...and i'm like a lamb hey and when i was typing this, it came to me secondly that your name is..."mary"..i'm not quick...it's the wine i just read jt. comment..and ds pulled too....just started nac here...but for allergy purposes...and i will continue....i think....into next summer...but only doing about 350mg....(i think my ds trich is allergy related) and ds also will rub and fiddle with hair and not pull if i keep on him...(i think more compulsion w/sensation also)...and send right to shower with solinium shampoo will ivig help this..i would like to know too

hey mary.... were you able to get the nac up to the dose you were on before??? maybe it just needs a little longer...how long did it take last time??? and i think...i didn't read the study..but should stay on it for months after or indefinitely for trich...

quick replies woudl be great..getting ready for bed yah...i think i will be heading to doc.... giving benedryl would be counter productive right(dries it up) any suggestions for bed time...other than sleeping on a ton of pillows

thanks for getting back so fast!!!! almost sound likes he's going to choke ...really!!!