Fixit

so are you saying you dont give probiotics every night... you alternate ..is that how you did it from the start with the probiotics...(maybe because 12 pills of anything is alot)..but sometimes squeezing in extra detox stuff i guess that worked for you..what kind of probi do you use

i tried it myself as being a pandas parent.. 1mg is enough...when i did more,,,i did crash, but did wake up and had some weird dreams... at 1..i guess it just takes the edge off..

Do you think the quercetin is helping your son.... i thought i read somewhere that you need to have vit C and Nac with it..like 3parts to 1 to not develope kidney or liver problems.... i did make him shower as soon as i thought he looked anxouse to pull.... i also gave him the isoquercetin last night 100mg... this moring..sitting there...he says..mom that shampoo worked....great(or was it the Q) either way is fine...will probably continue both...but need to see if i need to add nac also.. but is it getting to the root of the problem...where it's not just not causing allergy symptoms...but not causing brain production of dopamine or inflamation???

thanks!

and may the roads rise to meet us all!!!!

is ginger root for nausea??

so even in already allergy trigger...the quercitin stopped it...did you have to take NAC with it or is it blended already.... i just looked in my pharmacy above my coffee pot...i have Isoquercetin...is it the same thing...got it from DAn office in april ....never opened it.... oh just read this.... natural bioavailable form of quercetin (these spellings have a second E in it,,,not I) 5x more bioavailable rapid absorption 10x faster... 100mg per cap and even though there is a study about nac being used for trichotelalalaaa(hair pulling)..was told by same doc that nac can aggreivate yeast issues...cannot catch a break here...i really need to seem a gut specialist...(i'm assuming ds has gut issue per spit test and vocals) ps how many times a day did/do you dose 1 or 3 and is there any herxing with this...idk anymore

so even in already allergy trigger...the quercitin stopped it...did you have to take NAC with it or is it blended already.... i just looked in my pharmacy above my coffee pot...i have Isoquercetin...is it the same thing...got it from DAn office in april ....never opened it.... oh just read this.... natural bioavailable form of quercetin (these spellings have a second E in it,,,not I) 5x more bioavailable rapid absorption 10x faster... 100mg per cap

any thoughts on this statement about shots.... Immunotherapy, or a series of allergy shots, is the only available treatment that has a chance of reducing your allergy symptoms over a longer period of time. You would receive subcutaneous (under the skin) injections of increasing concentrations of the allergen(s) to which you are sensitive. These injections reduce the level of IgE antibodies in the blood and cause the body to make a protective antibody called IgG. About 85 percent of people with allergic rhinitis will see their hay fever symptoms and need for medicines drop significantly within 12 months of starting immunotherapy. Those who benefit from allergy shots may continue it for 3 years and then consider stopping. While many are able to stop the injections with good results lasting for several years, others do get worse after the shots are stopped. One research study shows that children treated for allergic rhinitis with immunotherapy were less likely to develop asthma. Researchers need to study this further, however. As researchers produce better allergens for immunotherapy, this allergy treatment technique will become even more effective.

been watching allergy site...ragweed up ds very allergic i thought i was hearing snot back there... today went to new panda freindly doc...he did see allergic irriation in ds throat.... came home from school...looked like he was going to pull hair out of head.... same thing happened 1st day of soccer practice.last spring... ds says the shampoo helps(at least helps enought)...mostly fights urge..... CANT TAKE THE ALLERIGES ANY MORE.... looked in fridge..aller ease...anyone use it....it says to use w/i 45 days of opening...well that was last spring...do you think it lost its mojo...cant' say it did anything in spring...but his allergies are so bad ..its like trying to catch a tidal wave on your tongue..... i might have to do ivig just to get his allergies under control...

that's how it worked for us..the 1st 2 times..he threw up..no fever...didn't know anything about strep...by 3rd time no strep symptoms just wake up ticcing and i would take him in, to get throat checked...and was told 2nd and 3rd time a coincidence..stopped mentioning it..tics are the first sign of illness for ds

sf..kudos...idk how you do it... when you tell us of all the herxing..(i believe you've spoken of this before with abx, probiotics,etc)..hold through..and don't abondon the protocal...where maybe myself and others,as soon as i see a flare i think bad reaction..must stop now!!!!... how do you hold through.....seriously

THanks for sharing.. you never did do pex or ivig ...right...??? did you do iv abx drip during surgery???

1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day) 1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid). Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult. so well researched and explained..thanks!!!

For ds...and this is a concern..because i would like to try to switch possibly but...... when we tried xr the 1st time this year we had joint pain/muscle pain 6-7 days in....(we hadn't used pen based abx for 4 years...doc said allergic to it)but based on it may have been rf we retried...i was devistated.... went off....scott said he wants to try again..i thought he was a little off on this...but he said since the reaction was so delayed...he thinks that the aug is just wiping out everything and letting fungus overgrow and causing the pain..so we tried again and used diflucan.... good news is no problems the entire 30 days...bad news..even though i thought i saw mild improve...it was just wishfullness. that being said..i also wonder if we needed to just get his body out of complete overdrive with the taper...so that the abx might have a real chance to do something...as it's not trying to get his whole system to calm down... also concerned about being on diflucan for extended time

Question about moving thread????? this is where the problem lyes(sp)..... though i appauled ACN in adding the lymes site..if i weren't fishing for something else.. i wouldn't have seen this...and thought he asked about maybe it might have a strange relation the same question someelse just asked me about myco p.... i guess we will see if it works...the split seems a little counter productive JMHO PS or is it possible to share 2 sites???

Ok found this thread... how is your dd doing..i hope well!!!! would love an update!!!

first i was hoping for an update on the t&a..did that kick the pandas.or closer to kicking pandas i am in the proces of lining this up..as any future work would seem silly if this is crucial key... again i know we just discussed this...but... being on abx during and after is key... ds is on 250 mg zith..he is 80lbs...is that enough when we do this... should i switch/double the dose/ add a second abx.. then we were going to take another break for a month or 2 to see if that was the final piece we needed..from my mouth to God's ears.... ent thinks they look ok...at one point are age 6 we were discussing t&a never happened..we moved alot too.... so i wonder how ds' will look.. i need to remember to ask for culture

sent what i could find to your pm... hope your dd is doing well!!!

was just trying to find some stuff..and i saw this.... another friend just asked me what i know about myco p..in relation to something similar... i'm sure you saw this...could this be another possiblity http://www.turkishjournalpediatrics.org/?fullTextId=585〈=eng sorry about a day late and dollar short...

i would like to hear from those who have done ivig...but for some they dont' see any benefit till 10-12 weeks and was under the impression that you could still see healing up to a year post... again, just for my own peace of mind(pom) i'd like to hear thoughts. and definiely the luxox may not be playing into his favor anymore and may be produceing the opposite effect. ie..new pandas mom/friend whos children were diagnosed 10year ago and sent to swedo..(daughter ocd/boy tics) daughter was on something to squelch last bit of it and then started having severe depression/talked of suicide and took her off the rx and did better!! could be family of anxiety..or family of suseptibility to infection triggering it...idk

Well that's not hopeful.... prior to this onset ds always had simple tics... at this onset he had one tic, then changed,then rotated, then combined..got worse and worse finally..after a few abx..and the taper..we are definitely 80% better than our worst point...but this place is not great...is this the best i can expect to sustain????? and since tics are the hardest to eliminate..this scares me, as ds is all tic if the docs think most of the kids would/will out grow it...and you've done ivig...does that just put you a step closer so they can outgrow the rest...or is that the point of achievement and we hold on not to relapse..and there are the FEW who get to escape this?? i've read enough here to realize we probably don't know this answere...but does anyone have thougths on this..or has there been a change in theory about this SOT

there is a lot to wade through here..and i am spinning curretnly...so hopefully someone mayb back me on one note get on an abx for 1 month straigth...watch the gut for yeast and such..then do burst... But if I could go back for DS...i would be on abx 2 months..maybe 2 different types..then do a taper... to clear as much infection as possible..and if you gonna go hd steroid ..might as well taper down to try to eliminate rebounding(snaps back(just as bad or worse) once off steroid... If i could go back....then again there is so much i would do different!!!(for my history ..dealing with this 7 years..this last onset i can't get it to kick..had many prior complete remsiions with just abx)

good point..

i'm waiting to hear too... just got off phone with doc b..told him about my 500mg azith for 3 days and back down to 250..he was ok with that...but ds is 10 1/2 80-83 lbs i too wonder if to low..but wonder if my uppage of zith caused gut issues again in lower intestine????