Fixit

Very interesting!!!!

What a journey you've been on....Great News...and thanks for sharing.... i'll take slow and steady any day!!!!!!

i dont recall what you were on before...if it was immune modulating ...that might be something to consider... but i totally get it.... why pump them up...if no contact...save your guns and their systems... i also dont recall..is your child..."in remission" currently

Are you saying that...once you get back to your baseline....should you see thing start to digress...you'll do the burst... or..if you see her slipping before that..do you think you 'll do the same.... also...since you see doc k...he said wait 2 weeks of back slide before you A(use a burst) B(do anothe ivig).. do you think that was the problem it had progressed to far before you tried to burst.... Sorry if you answered all of these before and sorry if the questions seem nit picky..trying to get the details down....with these kids the details are crucial....

we shall soon see my pretty

can i throw something out...not sure if i heard this right..or from who.... but ...maybe, tylenol is not good to use with ivig...it's counter productive to why you are using the ivig .....?????? again...i could be wrong, have the wrong info completely, misunderstood....... please, anyone correct me or clarify....and if no one does ,,,,still doen't mean i got that right....

when you say .the above bold type....is there such a thing as classic pandas....and what about pitands....?? like doctors lump everyone together........i would say you have pans or pits.....i'm not a doctor, but especially with your ds reaction to the ivig and 75% better and i'm not trying to reach into your wallet..but the more i read,,,it seems like 2 ivigs are required, in general...just talking out loud do you still have an infection going on...are you saying there is still strep.? and how do you know there is a problem with methylation cycle? or do we just want to call all of these infectous/autoimmune disorders/conditions/syndromes...how about IA or IAD, IAC, IAS???

yes it is stardard... there are 4 shots...

how timely....i tried twice today to do a poll about ivig and tics and i can't figure it out let me first answer with what i know....per our burst in winter..it took 21 days to see about 3-4-5 days of mild, mild tics...it was fantastic.....per doc k..not sure if it is just in relation to diagnostic test...up to 4 weeks to see effect if i may ask ...because moderate to severe side of tics are our problem.... how old is your child? how long from onset till you did ivig? how long ago did you do ivig? do you think the trigger this time was strep, myco p..dont' know? is this the 1st ivig? AND PLEASE anyone with tics.as main presentation...could you please answer any of these questions.....i feel like as soon as i can get approval.....i am pretty sure we are doing this....

i'm glad that it went smooth....and hopefully no more worries in that area.... can i ask...what is you are doing/going to do for allergy and immunology....particularly the allergy part... thanks for posting the good news

I am pretty sure that is the case for some. when life was good and i was (more)ignorant..i would tell the docs...hey did you ever notice, ds only tics when he has strep...."no correlation mrs xyz".....after a while i realized there was... then when ds tic changed at 5...i found pandas....but still didn't worry if the docs rolled their eyes...as, we would go in ,,,ds presents with strep or other infection...we get abx and tics go away... SO just abx can work..... but i think my boy has had tooooo many...and his system just decieded it was done fighting but before you jump to anyting .....see if there may be some other infection..lymes, myco p...ebv...and there are other autoimmune tests that may be run.. but doc k....and as a parent ...even w/o the test...you just know what it is....the tests do help...and they may help when you go to fight ins, other docs..family...etc...

that is the question and partially why docs are in disagrement about the existance of pit/pans my ds would get strep, get abx, complete remssion...till 3-4 months the repeat....i think we only had 1 episode in the summer.... but now..waiting on final myco p results....i believe his system may be cleared of all infections.... how ever..his body doesn't know that...it is in overdrive...no brakes.....and that is why some may need ivig.... i think i got that right!?!?!?!?!

just said a little prayer too.. can they give her a valum or something????

ok ...i think i get kimballots.. Sf mom, would that be your interpratation?? AMyslp, that's for the info also..maybe i can press the ins with that... thanks all!!!!

Check your personal message board called PM

was it this test alone that got you an "immune defiency" ore did it lead you somewhere else... so what did you do? did you revacinate?

are you sure it'on we paged through yesterday to see what time on the Discovery channel... mysteriy diagnosis was not listed..... of course it couled just be me

i tried reading this...but i don't understand..... just got my sons strep pneumoniae back...there were 23... 9 were below 0.3 11 more are well below 2 only 3 were above 2 they are supposted to be 2 and above correct? what does that mean? the test doesn't say out of range, it does note the thing about a leve of 2 or does this mean nothing?? is that an immune deficiancy??? lack of response or ability to respond??? would that qualify him for ivig??? i would really like to hear from anyone who understands

I have tears of hope and excitement!!! that was beautifully written... i look forward to hearing your progress. i believe/ think that this onset for ds was do to myco p also...and his system won't stopp.... so maybe you will inspire me.....i will pray tonight and tomorrow that you get the perfect amount of what ever it is you need....

per Guardian Insurance ...i need an in state doc to order ivig, if i go that route any PANDA accepting docs in GA, even at that not sure if its covered.... the Coram center seemed to think so ...but i don' know if they get the controversy Anyone....

hey dad.....can i ask..... at this time.....are you still or do you know if you have anything going on as in....high strep titers, low iga's, rising myco p just that this sydrome is so crazy.....i dont think when our new blood work comes in it will show any infection.... we have a couple of pretty high autoimmune markers...and gut issues...which i think are getting better... so i guess i'm asking if your son was still fighting strep, that might be why you need hd abx....if someoneslse had myco p..biaxin.... i wonder for amy s...if it was also just immune overdrive that needed to be settled...where as, your boy my still have a difficut time with strep, having it, fighitng it, excreteing it...you know what i mean...

THANK YOU for replying....... that is wonderful news!!!

those are the best most familiar just adding in case you can see 2 or more...or if you have family somewhere in these areas if you get to FL i truly recommend Scott smith in Melbourne....Works in a DAN office with other AUtism doctors he's a PA with his own 2 panda kids...gets it...has many test to see other underlying issues..does do high dose ivig

i'm sorry i see its been 8 weeks..... do you know if he has any yeast, fungus, bacteria problems.... going forward i don't think i'll put my kid on abx w/o an antifungal too......we are having too many problems getting this under control thou. things are better on another thought.....i know that some are using other biomedical things ...that seem to take the edge off post ivig...maybe you could use something like that... spironolactone,ldn......... are the tics basicly the biggest problem now.???....so it didn't help any on that......did the tics get worse did doc k think you would need 2 ivigs...?????

i asked our doc about nac....and because we are cycling through, yeaast, fungus, bacteria issues scott said not to...as it can increase ....yeast? ...i think.... so just a heads up if you have this kind of issue