Fixit

YOU DID GREAT!!!! So happy for you!!!! are you adding vitamin C..you need it so the nac wont cause kidney or liver problems..forget which..and i don;t remember if it 1/3 of nac does or 3x the dose of nac....

i have asked our dan about using valtrex..as per things i have read on other autism sites... no go so far......but on a thought..if myco p has no wall, i wouldn't be a bacteria and therefore maybe valtrex could help get some other part of it...i think valtrex can be used for several viral infections So folic acid specifically...or would any B's do...or maybe b12 so many report good things with.. i would thinkg the folic acid was going for the undermethylation Mary.... Dr K recommends Folic after ivig???? why??? why not before???? please keep us updated..

IMHO...i would say yes.. i am getting ready for a big gun too..trying to avoid trust me...but i want my ducks in a row to not have to re-do.. tonsils can become ineffective and the source of recurring infections.. after ds's are out... for my family..i am pushing dh...and will do middle guy as docs always comment on size and condition of ds#2.... too early and too tired but have my eye on ds#3

i hope we are still a- go for friday.... 1 mom mentioned that a neuro she had seen said.. they had a pandas kid who completely remitted just by taking tonsils out.... anyone else have any such stories or info

DS had that and the hitting tapping and the stand up/sit down is peeking out Doc L thought these to be chorea like

i would also suggest finding a dan doc...as they have other thoughts and tricks even panda docs don't consider.... other than that...I HEAR and UNDERSTAND YOU!!!

Thank God i didn't watch it!!!! But Rages!!!!! ok...when i am sick...GET AWAY...... and ds is one cranky boy at onsets.... and like a dan doc has helped me realize...like with autistic kids..the vocal they find are often associate with some gut issue...but science hasn't been able to figure that out...and if a kid was never healthy..how would they know if they are sick... and even as an adult..sometimes you don't feel good but you don't know why... and if there is a raging infection, i don't know of many who are nice to be around... Am I making my point clear!!...i know i sound foggy alot

This kinds hit home to me... Vanco has 3 times taken away the screech.... i don't know if it c-diff..or maybe lymes or myco or some other parasite way in the gut???? SOOO interersting i am pretty sure ds will have to go back on vanco...but like Betty04 mentioned maybe i need more than 2 weeks..i don't want to start till i have a more solid direction with the vanco...pray my heart doesn't jump out of my chest in the mean time..

Can you give brewers' yeast if you think there is a Candida problem? or will it help with candida??

JMHO...i would wait... you are going to have a lot of phone calls...apptmts to go to... till you have something to tell him...ie getting better..this or that result is in...get a little info together and sort of dump at one time...Pan/pits are still not widely accepted and they may just dismiss you and you just wasted x hours of your time.... spend the time researching on your own right now... again JMHO

steph..i got nothing...ds could be crashing because of cdiff ..yeast...and a big old circle J... or allergies or rising myco p... who the HE(( knows... did the auto immune thing kick up on its own since we never 100% marker... i would love for that to work and be the answer...maybe you can connect with the other mom... that true hope thing was looking interesting..i wanted to read more on that.. amd MichaelT just posted something about a natural product he and his wife see some relief with... i wonder if it would work with mcyo p as one of the things it targets is parasite... but i wonder if that could something for me as maybe the grapefruit seed extract may have kicked this up.. i for get what Doc Ros said it my raise something with an L that effects autisitc kids.. it also targets parasites... ds band 41+ and 39ind..that could be anything with a tail right... maybe other parasites??... i know the more aware i try to be with the supps i take i can tell i like valerain root better that melitonin for me but i think that mel works better for ds.. maybe it would work but just take longer.. sorry for rampbling....maybe the longer i type the answers will come to me for my ds..

that is a great question? that is why i feel like myco might be back..the marked rise in igg 2 weeks prior to this onset..and its 42-7 days post.....and even at draw i was wondering if i was seeing something peeking out around the corner.. did draw again today so we will see if its still going..i hope its not labcorp..then we are back to different increments again...shite..just thought of that... Creations still hasn't sent sample kits...getting tired of calling for follow up stuff...this is a 50hr a week job don't want to cut them off as they test more readily for stuff and i like that... the ped today gave me sample thing to check for c-diff..i don';t know how reliable their system is?? ds is acting a little goofy ..is that yeast..that might follow through with some of my thoughts..

and to keep you on your toes... i'm sure you probably have some thoughts.. do you think you will doing another ivig to knock out the rest..or are you using it only incase of relapse... or am i prying...?

if i go..who will drag me back...it might turn inot a brawl... when i get this kid fixed and the rest of them in order..i might be living in a 20ft C-class.. 3 pair of short, 3pants.3 long sleeve, 3 t's, 3 pair different weather shoes...1 week of underware no plants..no utility bills...and a "will work for food" sign... Do you think i thought about this!?!!

Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts do you have more info on how your doc tapers vanco..??? it just seems weird how it has worked 3 times already... But i am getting gun shy as i don't want there to be a resistance... the dose in front of me is 125 mg 3x a day for 2 weeks... how would that be adjusted to a taper.... even though i think my heart is going to pond through my chest.... i can't in my mind start it as (double knock, knock)when we have the T&A on friday, if i need a steroid i will end up in the cycle for needing vanco AGAIN!!

Thanks Michael.. is it one of those things you would need to be on forever? is it something that after a while you just take it weekly? i a little tired..do you know of any side effects? how long have you been using it?

i'm sorry to always ask these questions...so many kids to keep straight.... is your daughter symptom free currently? how long after ivig did it take to get remission? and sorry to make you repeat...it's been 5 months since ivig? thanks jag

just got back from ped..he didnt' want to give letter of clearance till blood work came back..(the work they need for the surgery?) i insisted..please just give me the letter and let them decide if the blood work looks bad...i didn't want to have to chace he once the labs came back...so he gave it to me and i just faxed it... they said they received it..let;s see what tomorrow brings.... did culture ...she did say he throat looked red/raw??? could that just be from screaming maybe it's just post nasal/allergies DC that maybe makes me feel better...the thing is we got to 90% ish with the taper....but didn't hold... so will pex get me to the 100%..if i get there i feell like i can keep him from strep as no positive strep in 2+ years... i feel like its circluating mp...if there is such a thing... like why did the turkish patients relapse... is it autoimmune and unless you keep the system surpresseed....would they have held if at the first sign of relapse they did a taper??? and they weren't on any abx ..... but what would the right abx and dose be if they were going after myco p not strep...would it be different.?? so dc ...sorry i don't remember..was myco p one of your childs triggers too? and how long has it been since pex for you guys

maybe hence the vocal tics!!!!

Back from ent.... i can't win...i put encephalitis on paper work..and they are pushing for letter of clearance from Doc L specifically or Doc b and they were maybe ok with letter from pedia... So i've been in touch with doc b's office for last week or better still waiting on letter..he is out all week. called doc l..she is out and there is a letter she started but didn't sign.. have a phone call into ped...who is panda friendly not expert... Good news is that i was told that pex is on ds chart...so that is good...will it clear myco p???? i still want tonsils out...and need to talk with some myco expert.... i feel like if it were strep...in ds' case it would clear more efficiently with his prior experiences AAARRRRGGGHHHHHH Yes this surge has me in a tizzy... it's the jumping that makes me go back to mycop...it;s in the legs..and the fact that 2 weeks prior to this increase in symptoms..his myco level went up ??? but yes...he is exposed at school all the time to junk as i was typing ..just made appit with local doc and maybe have him print letter right there philly pa..that is good stuff...can you possibly pm me with some leads

Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts

tpotter..i believe i will do the same..more to treat the myco p..... the weird thing is jumping started this current journey..and the vocals started 3 days after staring biaxin but i also started a steriod about the same time..just 1 days staggered.... so not sure if it was the biaxin causing herxing..or steroids bringing up the yeast....or both bringing up yeast. the turkish paper is the same you mentioned... i am curious as to their relapse...??? did they need ivig after to reset the memory..??? was it that myco p never left their systme and just repopulated??? if it is as invasive as thought..they would need to be on abx for a couple of years...like gulf war syndrome patients... why do also to of ts patients show high myco p levels.... and ds would remit with strep..and other bacteria that presented in tonsils and docs where concerned that even though swab was neg..his history made them nervous and they would prescibe abx..not based on his tics..but based on history and his throat presentation... as i ponder why this episode won't go away 1 year 5 months later...it makes me think i am not getting to the culprit....and the culprit..i am almost certain is mycop... my concern is there hasn't been enough focus on it to figure out how to successfully treat pitand patients with this trigger. and part of the problem that you and i face..i'm assuming this is the problem...we didn't catch it at onset...to get it before it proliferates....you are talking years...and ds has been at least 10 months.. how quickly does it replicate and or migrate?? so i will ask how long and what combo of abx does ds need...? who treats gulf war patients????

Really!!!!! i've been blowing my husbands off ...as he is mild and has a full life... but as i go farther with ds...dh and i serioulsy see a need for him to be treated!! i think it would help ds and i am concerned dh is developing other health problems in relation to pandas... but he's not a spring chicken like steph

i took valerian last night..i tried it a couple of days ago...i might like it better than melatonin... i slept through the night and didn't wake up....with mel..i still have this 4 hours thing where i wake up 4 huors later...then i might just stay up till morning..though i try to go back...don't want to take another mel because i need to get up in morning... i think i will be call for valium...if the screech is like last night..he we will really need to be more sedated for a while...

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it. Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!! so your daughter was on amox for procedure???