Fixit

I TRUELY HOPE IT DOES THE TRICK!!!!!!!! we were on aug with same results.....had to come off also...did 5 day zpack....i don't think it wsa high or long enough....but we have stopped everything in order to do anohter battery of tests on monday....... i think dcmom said it took 30 days on zith to see the improvement begin!!!!

Suzan....in the mean time...are you keeping up the probiotics...... ANd i really wonder....alot of folks are reporting ramp up right now...no matter if ivig, pex, on long term abx..us too I really have to think allergies are playing a part here....... would you mind posting who you are seeing...is there another neuro besides doc t who acknowledges panda/pits????

yes, we have had exasperation after dental work...a lot of these conditions seem too... we just recently went through this...ds lost filling....cavity black...old mercury type fillng, novacaine???? could be bacteria, the shot in way back close to nerves, mercury, uncomfortable stretcing of those muslces(my mouth hurts with dental cleanings)... i believe there are a couple of threads here regarding it

Apple Cidar Vinegar =ACV hello - I'm new here and I'm from Europe so it's not easy to understeand everything - can You explaine please, what ACV is?

Oh brother.....i hope it's not conflict.... there are only a handful of these willing docs.....and if they are not getting along, it would not be good!!!

dc great reply..... and thanks for including details(and other do too)that someone may not have thought of.. .what i'm trying to say is.....i first looked up pandas about 5 years ago..when ds was 5 and the many strep/tic correlations and the doctors would roll their eyes at me....but i didn't have to keep coming back because we would always get abx and would get complete remission(even with docs rolliing thier eyes and i had a name for it)so i didn't have to check back often with this onset...and not getting docs to give me abx...i have explored many avenues this time and still asking each avenue direction,,,,do you think its pandas?? Brain balance/tmj doc..do you think pandas...as i always thought that was the crux and past history.... what i am trying to lead back to is.......thank you for saying it took 30 days to see something.....i was spoiled into seeing a change immediatley and 50%or better inprovement by end of abx and complete remission by 4 weeks.... . NOW....maybe it was a different infection...ds has had this a year now...not just a couple of weeks......he is 10 and maybe recovery take longer.....and its taken almost this whole year to reaffirm my direction...understand pandas better.....finding the right doctors.........and constantly reading and rereading posts by everyone here for new ideas, publications, persaonl experiences So..i saw a break through w/ aug.....but did starting clarth 3 weeks before help break down whatever was going on first..... we did the 5 day zpack with little fan fair.....so maybe as you posted, the dose wasn't high enough nor long enough as his body and situation may be different now...my expectations are too high......AND PATIENCE..... is my biggest enemy...

Thanks Momaine for replying... i was inquiring on bronxmom and sfmom......it gets difficult to keep everyones story straight.... i see on bronx other posts...that she started with doc K, ithink and moved over to doc b....for montly ivigs... was more curious if people's replies were word mouth or a personal experience....

i guess you are using dr B did you do ivig.... did you get it covered by ins

are you seeing dr B...

i did vote...ds could be in honors math if he wasn't busy being the class clown... he does help other kids with math when they break into small group we used to fight for hours about homework....now it has completely flipped to homework being done before he gets home from school.... i don't want to give him all the credit...teach says this is one of the best classes she's ever had and they do their homework..as they wait for dismissel.. she has never seen it before......so he may just be trying to be like his peers...... but if something isn't done, on his own he remembers to do it, or when i 'm doing homework with other kid

I CAN NOT believe you just said that! My son says "I like cheese!" all the time! It's completely random. He also says, "I like soup" or "Eat soup!" for absolutely no reason. The irony is that he doesn't like either soup or cheese! LOL I just relayed this exchange to DS, and he can't believe there's another random "I like cheese-r" on the planet! Thanks for the laugh! Now if too many others chime in with some common experience with that particular phrase, I'm going to start to wonder . . . . I agree with simplygina....as i believe my son may have a class clown tendecy... But we have..i like pizza.. in ccd class he said the saint did something because he likes pizza... then randomly as i sit listening he says...i like pie...in that same class.......as the class was calmind down.....almost instead of , you or i releasing by letting out air......I LIKE PIE.. never at home........we may have had cheese and chicken too... at school earlier in the year, he said either i like beer, or just the word beer,,, needless to say the class laughed and we got a phone call

Pathfinder.....THANK YOU for proclaiming this!!!! IT lifts my heart.... Nita...i would definietly ask dr k about raising abx level....if he sees this alot with older kids.....and he says he is still learning..... then maybe he has it a little wrong and his proticol needs a little tweeking....you can always lower it again... I am no expert...just starting to seriously consider ivig....

THanks for the reply HAPPY for you!!!

that is what i was wondering.....this is usually a bad season for ds too!!!...things are pretty bad here right now(allergies exasperate it) maybe you just have to ride out this first year post ivig...as it seems its not as bad as before....and if things don't get better by may, revisit a do over with doctor..... how old was dd when tics started and how long till you received ivig.....

CAN you immagine...since there was only a slight pink reacation and he didn't get that, if he didn't get a good swab... you would have gotten sent home...no abx....and maybe you'd be on a jouney like ours.... and yes the only time(and maybe a weird annomily) a pregnancy test would be wrong is if it came up neg...(not producing enought hormones yet) but if it is pos....you can expect a gift in a few months!!!! So simple...it's probably that he didn't get a good swab. It's not like she sits there and just opens her mouth. After minutes of screaming, crying, covering her mouth with two hands, we lay her down on the table and he struggles to get the swabbing-I think she even kicked him. I wonder if that is why the rapid test appeared so faintly.

my ds had high aresenic w/i limt but higher than happy with...it stood out

Thanks...will do..... and i can understand if ivig wouldn't be offer till 3 yrs....so much is going on and hopefully the body has a better healing rate on its own i heard that scott does more extsive testing.... I THINK i would like to try to still controll this with abx....but i don't want to waste too much time!!!!! Since i am not geographicly close to any of these real pandas docs...i have to go with who can help with each next step....i may end up back with doc k at some point...but i want to try, to be as sure as you can possibly be with these kids..in what co-conditions i am dealing with.. DS and i are racking some sky miles!!! and i will definitely persue a higher dose I agree and not to mention he is quite speech delayed (he has had 3 words since he was 10 months old and he still only has 3 words, if that). He also had early signs of autism at one point. He no longer has the autism signs, but sometimes I wonder what all this pandas and antibiotics can do to him in the long run. Anyway, thanks for the suggestion about the steroid burst. I have been sitting here thinking about emailing his DAN doctor about that very thing. I know he would be willing to do it, I just worry what all these meds will do to his immune system while he is trying to fight impetigo, ya know? Stephanie

Humm....just to add....as i look back at ds amino profile....his taurine was high 159...end limit 148??? and i think they added taurine to his aminos????? just tried to put a call in to varify...as i roll, they are out today and i need to call back!!!! i'm refering this to the camk test taken just 2 weeks post program ???

Stephanie,,,,i'm curious, what does Scott say??? haven't you contacted HIm..... as i am going to see him next week..i would hope that he would be helpful?? didn't he just do your other son's ivig?? I agree and not to mention he is quite speech delayed (he has had 3 words since he was 10 months old and he still only has 3 words, if that). He also had early signs of autism at one point. He no longer has the autism signs, but sometimes I wonder what all this pandas and antibiotics can do to him in the long run. Anyway, thanks for the suggestion about the steroid burst. I have been sitting here thinking about emailing his DAN doctor about that very thing. I know he would be willing to do it, I just worry what all these meds will do to his immune system while he is trying to fight impetigo, ya know? Stephanie

It seems my ds may be allergic to aug as well... but per Dr t and Dan i in fl (who has pandas kids and access to ivig)...we may retry..as the reaction (hives/muscle paint)7-10 days in may be from die off...we will see after a few more tests....But the aug was working beautifully!!!

It still makes me want to cry...sorry http://www.washingtonpost.com/wp-dyn/conte...alth⊂=AR

So in my ds...i may have let his first couple of streps go on longer than needed, as a first time mom, and never having strep myself, i did not know what it was...then the next sore throat, i thought was just a sore throat....THat was before i would run to the doctor for every blip But i still don't know if ds had ocd...just tics that would remit with abx, like clockwork about 8-10 with pos culture..and 1 1/2-2 years of remits with abx w/o pos culture, but presenting upon visit with some sort of infection....until this last onset, now 1 year..but presented the day before onset at docs with something going on as he didn't feel well... I just get concernd with concept of having to have ocd...maybe we need to consider being more geneticly predispostioned to ocd or ts or the possible combo and i wonder since I AM GUESSING...that ocd may be considered more debilitaing than tics, you get a lot more follow up and looking into pandas...as with ts, i guess (some parents don't see it, oh thats just a boy being weird, or thats ts, good luck, do the best you can, now go away)Do you get the jist of what i'm saying??? Now ds cam came in at 105..still considered on the parameters of the test i guess...when i spoke to a dan doc in fl yesterday he said it's sill in there... But ...now with the new info...ds was taking taurine for 3 months leading up to the blood draw...and he was not in exaasperation... Ds has had sensory issues, and adhd,,,,just my diagnosis...because compared to other kids it was just boy stuff....and managabe,just annoying Also just befor onset< this time,....he started to pull hair out of the top of his head and maid a little bald spot. and this year 1st day of soccer practice,(outside, pollens just starting to rise) i noticed hime going for hair to pull... we addressed it changing shapoos(dx prescriptoin)...he said it feels like someghing is biting him undere the skin and needs to pull it. this time he added that and he said it feels like the hair will fall out if he doesn't pull it???? But prior to this....if we hadn't progressed this far down...i would say it was just tics..(as things got better on aug, i thought maybe some were ocdish in his abblity to controll it, but it didn't last long enough since we had to discontinue)..and would not want to be excluded from pandas dx,,,we still don't have one Formally....DOes anyone...who can declare that....Drk thinks it,,,,dan from yesterda thinks it(we are seeing him next week) I'm sorry for highjacking thread.... I would love your thoughts, especially buster.

I have not words........i am empty too i did just post on the ANGRY thread....that kinda felt Good!!!

I want to kick some. F.lksjlijoensf s osso sn Neurologist's %%&&*())_)___ For the Dumb A(*&%*&%$%_ studies, when they could be doing real work OR JUST LISTENING TO THE PARENTS i want to screem right now myself :angry:

i agaree in that if it sounds lecutrey, angry , we nay not get the response we'd like one idea for who ever may write this is...take snippets from other artilces...even the things that postulates theories of why things are working even though they shouldn't, because it's already well thought out, ... like the article i just posted and make sure you include a bibliography.....