Fixit

I'm so sorry you guys are having PANDAS symptoms again....you've already been through so much! ditto

IMO oppositional beh. is a big PANDAS symptom...it was for us! There were a few parents that have posted that didn't even "know" their real kids personality was until treatment...they didn't realize that oppositional/difficult beh. was part of the dz, just assumed it was their kids personality! yah...i don't know....he wasn't pleasant, and sometimes i felt like i was on eggshells, but when i hear of some cases here, i feel like i cant' really count that as one... and on the mood thing....i wouldn't say he was miserable you know what, just seemed more pubesant??/ but since starting new regime....he can still be like a teenager, but there are more easliy gotten "good moring mom"'s and stuff like that....that was the first thing we noticed in the first week... and that was hard to gauge because they are such a mild side product, I'm getting a little distraut, as we are a good 3 weeks into clarith, 20 days post burst and 5 days into augmenton sleeping has improved, that might be a big one for us,(more solid) about 2 weeks in we had to refill a tooth and at that time our pollen counts were in the 400's already.. even though we had a worsening by end of 1st week things seem slowly a smidge better than we started aug about 5 days ago and w/i 24 hour we had a noticable gain again(and i want to attribut that to the aug(not the burst), as in past he reacted well to abx's. but now i feel like we plateauing....maybe sawtooth , not sure if they are getting worse again...pollen is only going to go up!! dr k said it might take 4 weeks to seen benefit from burst...but we've had so much interference, even dr t said that.... And i wonder if it's the myco p, if that is just a longer slower haul with tics and one more,,,if you remember we found out my dh has eleveted aso and antidnase!!!! he starte abx 2 days ago

thank you

He hasn't had a strep infection that you know of! Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative. Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS. Not trying to argue with people who've done so much and know much more than alot of doctors out there...but i don't want to be left out of the life boat. My ds is currently dx with Ts of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish. Last 2 years no recorded strep but with abx complete remission from tics. This last onset 4/6/09....my theory is, he has horrible allergis..pollen count that day 3000ish....presented at docs the day before(and every visit)presented with swollen glands etc... I was able to get abx but was wrong one, and not a strong enough dose. Also son has Mycoplasma P. that i would never have thought to look for. It has now been a year, and i am concerned that the MULTIPLE strep infections reallyd did some voodoo on his t'cells. We have very recently started on a new regime...and things are mildly better, of course we are being slammed with dental work about 2 weeks in and the pollen count here is Very High....DS is completely clogged up...can't catch a break!! And let's not forget Lauren...the sneezing girl....i just think tics are harder, hardest to reset, hence harder to figure out trigger as recovery will not be as immediate as ocd perhaps and peolple aren't waiting long enough to see if and what works!!! JMHO PS and as doc t's chart...as kids get older they move into a pandax catagory(his system) where the course of multuple infectins let any "irritant" create the same type of exasperaton(if i worded that right)

What i was saying in my statement is...once you have the condition be it dramatic like a tsunami like my son or more gradual...there is ebb and flow...and that may go on for months or years, because it's hopefully not killing you, it's just irritatting the ###### out of you body...and until your body itself, in rare occasions heals itself, our you find someone to help you it will do that for months or years.. An example is 1 neuro i see down here..does not believe in Pan or pit...her own child has ts.....overnight onset, and even she as a neuro, who knows what ts is and says her husband has it, ran to the emergency room...Because she was scared, even though she "knowsz' she couldn't help him.... Her son is now 15ish and still has ts, but his onset was the worst it ever was and is at it's best now and maybe he will always because she just accepting that there is no correlation to onset with ANYTHING ELse????( REALLY!!???!!!!????? quote form HOUSE.went something like this.."do you think they believe us?? of course, we're the doctors, there gonna believe what we tell them" so as a patient herself .....she's like..ooohhh, o.k. Now, she also believes it because her husband tics???? he has pand/pit too !!!! and as your body hopefully matures and builds more resistance it goes away (those miraculous cases where people have ocd, ts, anorezica for3, or 5 or 7 years and then its just gone, AGAIN , REALLY !!!???!!!????!!!) or your system never quite kicks what ever its fighting completely as you go into adulthood and you still have lingering signs of your past..or for some unfortunate people there system is so wacked it never gets better or continues to deteriorate...... And just like any other disease...there are varying degrees of psorisiys, eczema, allergies, thyroidism, and they all flare and get better and some remit completely!!!!that 's the exciting part. I'm just re-explaining my statement. I guess i'm fired up today. (and that's why all those meds have minimal effect at best...they are on the wrong path!!!)

So as another hypothesis, your thought is that maybe because the herxing is bad or more so for pand/pits that maybe the protocoal was stopped early and there still might be a benefit in the long haul. But because conditons worsened, it could have only been temporary set back, and if they were able to push threw?

Can you explain the bold type....are all steroids high sallicylates????? if so that may explain some things.....i don't beliee you can test for salicyclate allergy but every time ds eats fruit his mouth itches.... has anyone new info on possible treatment or tests for saliciyaltes???

i haven't anssered yet.... its 1 or 2... even though ds always gets very good grades the teachers would say if you could just get him to focus he would be in the honors class...and he was always a bit(not crazy crazy)more active than the other kids...but could/can equall sit an watch a movie,,(and he can sit better than other kids at times)...,and he always would touch the walls when walking by, a senory thing...(but not a certain number of times)....some oppostional behavior,(but i relate that more now to when he was getting sick)and when i see other brats my husband and i would think we had it made,(and handwriting gets good and bad)....,so at what point are things a young boy(who i think overall need more stimuli) vs a prelude.... but every exacerbation of tics was litterally overnight with more fighting and oppostitional stuff and bad writing....and not just a tic but 100-1000s of tics a day..i'm sure he's grumpy because there is an illness/he is physcially exhausted from moving... Anyway MINI POLL 1 or 2

I echo T.mom May i ask when you started new regime...i don't need a blow by blow, but more curious when you figured out pand/pit and how soon after you started new modality and how many months it's been since you started this new journey... one more...how old was ds when you started...was he still 10 or was he already 11 I love every healing story.....It's like going to wedding...always a good time!!!

I could be wrong, but when my mom used to get charlie horses in the night, she was recommended to drink tonic w/ Quinine,, it did help!!! So that would/could mean its all muscle related. I cant ask her since she and my dad went to heaven and left me orphan a couple of years ago...I don't want to be grown up anymore!!!!

Living in GA son can bearly breath....i think its affecting our progress!?!?!? r i don't know how to do a poll?? so clarition, benedryl, zyrtec......do any off these make more hyper than others????? so that it would increase tics which has the least side effects.......i've been chasing so many other things i never fully looked into sublingual drops now available at allergy ENT office...these are the ones that are waitng fda appoval this year.....please chime in all.....especially those with tics or if you have any other medical reasons you heard one is or is not good!!!!!!

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents. Just sayin'. DITTO!!!!!!!!!!

Ok so here is question. i want dh on abx asap.....what would be saving sammy dose for a 6ft 195lb man...endo gone for weekend...going to take labs to our walkin were we go about every 2 weeks....DS on meds but if hubby sick, were in a big circle j. help much appreciated!!!

Seriously...an hour ago got labs back...had hubby checked because he was doing other blood work...no MP ASO 317......he's the bloody carrier.....he and my ds are the ones who get the strep...son neg on all titer but pos mp...maybe that's why recovery SLOW got to run...always freegin something question his dnase is 240 but it didnt' say if in or out of range....anyone know....trying to get abx...labs done with endocrenaologtiet

i just got my ds results back on serum for tetnus and vericella tetanus was ok , but nurse seemed a little pushy about redoing it and he failed the vericella... ds is 10 and in the 4th grade. he will need .at least the vericalla (since he showed little to no titers) to go to middle school are required by state of GA are there any concerns here about either of these all thoughts welcome

Can i ask is plasma ph, more readily covered by ins? or did you have to pay out of pocket and is it as costly as ivig? thanks to those responding!!!

Playing devil's advocate here.... i think maybe it could be each child is different.... and sometimes my ds is too cool for school and other days he want to play with his 2 1/2 year old brother...or play something with the 7 year old... i think this is a very transitional age I want to add that you as a parent of that particualare child have a better idea of what is going on than i do i'm just putting some thougths out that might ease you!!!

I am not the one to give you a full answer on these questions.....but if i am correct on one part, maybe someone can back me on their thoughts,experience, knowledge... Maybe we are looking for results too quick.... 1) being duration of illnees 2) certian things like lyme, mp and maybe even strep may take longer than 1 or 2 rounds of abx and may take 6 months to a year depending on how chronic...this mind you is part of my new theory....... 3) and even in healthy person if you get sick and it runs it's cours in 7 10 days....you still feel like doody for up to a month later...so that would mean somethin is still effecting your body it sounds to me like you still have some things that need to be cleared from him!! JMHO

i am hoping for you on a personal level...but also in the greater scheme fo adult ANDAS/ITANDS that this is the begining of a recovery even if very slow!!!!! even when my son was more resiliant...i would see a lessoning of severirty in symptoms by the end of his abx dose, but would still take a couple of weeks for completer remission.... so i am hoping that we are also on a slow recovery path.....being that i hear of it taking years for some to recover from lymes and/or mp God Bless!!

knowing what i know now..i'd get the aso titers and a mp test my middle boy has a nagging cough...he always gets it this time of year ....but i think i'm taking him in

my sons iron is fine...i was bringing up the point of not wanting to had more per say in a multivitamin...

I just emailed Dr T...i hope i'm not in trouble i was just asking as it seemed so specifice and an odd element i take everythng i give my kids past a professional be a administering and that was why i posted about the iron too!! now i'm questioning amino acids which dont seem to sit well with my son/// trying to plug through that paper a couple of pages a night.. and i always!!! welcome dr t's advice...but if it is a conflict on any level for him to be here i get it!!!!

is it possible to dissect this a little on page 702 it says

Actually one of the neruos i use/ed is out of St christophers...and i've been asking him about pandas for 5 years.... nice guy, but me telling the tics and strep came together got me no where i don't know the politics....but if they are tied to the same hosptial or group, i have my doubts If you get anywhere with him PLEASE come back and let us know!!!