Fixit

i don't know if the white paper and diagnostic code(we're getting one right?) coming soon would help.. then it would be real...and i know it seems forever.but it is september..so oct, nov..hopefully, idk..maybe someone heard something....and i know i mentioned the nimh statement..it does talk about ivig/pex for pandas... not pushing it but can't hurt..

just wondering...as this is scarey...do ins transfer all records to new ins co...as i am almost certian that when i went to get approval for ivig early summer that the dan office i used put in pandas dx... i will have to call tomorrow to get a copy....their forthe rightness might be the undoing of this for me..

well that's the thing..it's ungelateing(sp) right now..i don't know which way it's going ..yesterday i was ready to do ta..things were b-ad. today alot better.....literally such a change one day to the next... so if i do want the big guns...i want to not second guess the ta, and then have to wait longer.... AAAARRRRRGGGGGHHHHHHH!!!!!!! now dh we are no where close on him..this is only 2nd week new job....but i would like him to see doc L or B to get their thoughts on him particularly....!!!!

are you a.o.k.??

http://www.snoringcenter.com/ One of the news show did a segment on this procedure called Laser Tonsil Ablation done in this clinic. It is an alternative to t&a surgery. This was a couple of years ago and I was considering it for my son because the recovery time is short. This clinic did not take insurance but I'm sure there are other doctors who do this procedure by now and maybe able to get insurance to pay for it. This is my 2 cents: If your child has an immune problem then t&a will not prevent strep throat but it can help prevent colonization. I think abx before and after t&a is necessary just like with dental work. thanks will have to look into it...just changed ins..said we are 6 months out from such procedures...long story...so while i get the paperwork in order and their info corrected...i'll have time to check it out...

i never heard of that...that is scarey...nothing like that in the family but still who nows... (but i will say...as i'm pretty sure i'm the wild card on board..i think that bipolar and schizopharaina are infectous/autoimmune too)..people just waking up with such conditions..i've heard of 2 people...think about it anyway..were you on abx prior, during and after maybe the cut something else while they were in there.... that's scarey... how about your dd...and how did she fare?

ahhh...the million dollar question. Plus, if there is strep hiding out in tonsils, sinuses, elsewhere, it might not just be intracellular. Or the "intracellular supply" might be periodically refreshed. both very good thoughts/questions!!!!

i find walk in clinics very helpful...we have a great one here...and the few times i mentioned pandas no one dismissed me...and actually a couple were intrigued... though i don't know if i would explain the whole pan/pit if you just go in, say there's been cases at school and we are all suseptible..or all feel not right...

Really?!?! that is great.... i don't remember ...did you do ivig or pex

did you have them cultured...did they look odd? your ds?

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder. Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa. Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family? Am I making sense? Just my gut feeling...that's all. i disagree...the pandas mom i just met, who's children met with swedo..if only once...but couldn't do study because of distance..daughter..ocd no tics..son tics.if ocd she didn't mention it dh who i believe is pandas...tics...his older brother who had scarlet fever as child had a mild, short lived case of ocd in later years... that went away or are we agreeing..,,no bother.. i just feel like we are too early 20-30yrs maybe 50 the way science runs, from shutting any doors...that's all

did you have them cultured...did they look odd?

i'm looking...i'm not the one with any med degree...i don't see anything that has azith and Clav acid anyone?

let me twist this another way... is there any reason to NOT take them out...other than anesthesia

ok..now more confused...as i am sure most here..i do not want to do any unnecceary procedures or meds.... but when i saw doc L she asked why ds tonsils weren't out..as per prior streps... we have not had a pos strep in about 3 years now...(last onset myco p...other onsets, though not pos, we did get full remission with abx) so i asked doc b about this and he said they essentially become ineffective and we may benefit from removal..... maybe as per docs thoughts, even though not "strep" maybe other bac/vir caught in there???? if i am to procede with pex or ivig..i want to make sure all mircobes are reachable...isn't that the essenece of the t&a..or the fact that they may harbor,be the source of the infection...or that bad tonsils just make the bacteria harder to erradicate because it is hard to encompass the tonsil... idk..just asking....i am trying to understand...i don't fully know or understand the anatomy, and why abx cant'seem to reach that area..as so many have cultures or obvoius infection just upon removal of them.. you did not have them removed for your dd? are you totally against it? maybe for yourself you were spare more infectins if you hadn't had them removed?? i would like all thoughts on this

I apologize if this sound stupid..but i can't digest anymore info.... is it possible to get Clavulanic acid in time release form.... Ds can take aug xr..but he has to be on diflucan too as it just wipes out everything in his system.. is it possible to do azith and a clavulanic acid pill or do amox at a lower dose and do clavualnic acid...i wonder if time release is the key..not the high dose.. again this may be what you are saying..but i can't compute right now...

Thanks...and you don't give Nac too..right?? so for my ds..it seems allergies create some skin problems...it then feels like something is biting in his hairs...and then creates the urge to pull it...so in that light it would seem that in controlling the allergy, i control the urge to pull hair... but i could be on crack and imagining everything..the self doubt is incredible...but this would have been the 3rd time with the exact same causation..just like my expiriance with the vanco... he also said he felt it starting up when school started..which is when we where just a couple of weeks off a beautiful taper that climaxed with 2 days of no tics, that i can recall....2nd day of school..we started the slide... maybe besides ragweed(we hadn't been outside much prior as to our road trip north)maybe there is something in the school????? last night he seemed depressed(this kid is never sad,,,ever,ever, ever!!!)(gets cranky, or stubborn)..then when he turned to a certain angle, i could see he had shiners...he seemed a little off this morning too!!! Sorry just venting some too...

dh now considering it..... but this lets me ask these questions... if your dh had his out and is still getting strep...well...isnt' that the purpose...or is that maybe at least you get less strep... or is it that if the tonsils come out..you may still get strep, but at least the abx can get to it and it cant hide.. just trying to understand..at one point i remember...there was a back lash about getting the tonsils out(not necessarily here, but more with the medical community)....i dont know or remember the reason for the turn in thinking thanks

I'M SORRY!!!

thanks that makes me feel even better...the ent staff is trying to arrange it though i have not yet gotten the letter that was requested...hopefully i will have it tomorrow..and surgerys SOON...

sorry you are here with us... i stay at home with 3 kids under 10....dh has been gone all week...no break..potting training,not making the potty, homework,fighting...what is safe to eat....i lost it a couple of hours ago... the current problem pan/pits have is that we, here, now, are on the cusp of the learning curve for this condition.(also the cusp of its acceptance)...many of us have been dealing with this in some fashion for many years..we are guiding the doctors sometimes as much as they guide us...it's not 90/10 split...not yet...more like60/40 70/30 80/20 in specific instances as we may have to even plead with some of the specialists to try changing their protocal, just a little to see if it works for you kid,...as we tell them of each of our current experiences/changes. aha moments....and it gets tiring being, full time anything and be residents in training(that's us)...and it's your child in crisis!!! So i find 3-4 glasses of wine to be helpful and come here once in awhile... Maybe, luckily for you...you are here in 2010...there will be so much advancement and understanding coming We are going to get there!!!

anyone ever use Sinupret... sinus .respiratory & immune support.. promotes clear nasal passage.and sinuses helps strengthen the bodys natural immune defense.. cowslip sorrel european elder eruopean vervain gentian other...maltitol, ethyl alchol popular in germany

yes...i would like to have dh see one of these docs b,l,t, to get long term abx(one doc just did give us more) i feel commited to now to doing this.......and to wanting hubby to follow all the same protocals..i may send him to doc b or doc l...(timing,((new job,)) time((new job, 3 kids and not being able to talk)))(i look forward to that) money and patient care...i dont have anything left to help dh in anyway at this point)

i have not fully persued lymes yet.... but i have to believe there are other lyme doc's who would serve you well.. hopefully this man has trained and guided many and you can find someone..maybe not as many years experience..but caring enough to follo through and maybe save you some pennies...till he/she gets to be 80!!!! get in contact with llads and maybe talke with lyme mom

can someone answer..(.waiting on letter from doc to procede with TA...) at one point when ds was 5-6 we were talking about tonsils coming out, since so many streps...doc never thought a real issue, so it was dropped...maybe moved? ent wont do it w/o letter from a pandas doc to procede as they do not look bad to him is there a reason to keep them... just got off phone with dh..i talked about this site and all the experiences with tonsils looking normal and once out, all the stuff wrong with them.... hubby goes...hmmmm....maybe i should have mine out too...he does have mild tic...he gets strep 1-3 times a year... is there any reason to keep tonsils..i realize that they are supposed to fight infections.. and ds look normal.. should dh have his out too....i may have answered my own question..but would like to hear more info ps..need to redraw dh antidnase..was still high a couple of months ago.... argh..he just started new job..i heard it takes a week..and his job involves alot of talking..(fits him well)