Fixit

Please give her a big Bear hug from all the Pandas(bear)pitand parents..because we know too, how much more she had to do to get where she is!!!!!

Well, they've isolated genes related to other conditions, like TS and narcolepsy. And they've found an OCD gene in dogs. I heard Dr. Kenneth Bock ("Curing the New Childhood Epidemics: Autism, ADHD, Allergies and Asthma") speak at the AO conference, and he referenced a genetic component. His take on it was that some of our kids are genetically predisposed to have inefficient systems with respect to being able to clear out or move beyond environmental toxins and infectious agents, hence making them more prone to various conditions. It make sense to me and, frankly, helps beat back some unenlightened folks' arguments that, well, why don't ALL kids exposed to strep get PANDAS? Why don't ALL kids who are given the MMR vaccine develop autism? Answer: Because, moron, it's just not THAT simple! yah...i guess i worry that,,if they say its genetics they will start dismissing enviroment, infections.etc in alot of things that are starting to get momentutm you are right and true/real information is good...and that will lead to true real anwers and not just bandaids...as long as they take in all the other outside components... and why do just the kids have this gene not the parents??? did something in the enviroment in utero do it...or were they normal then the gene changed post vacine, infection???

they didn't give any real numbers..but thought i wold post this in regards to autism http://pagingdrgupta.blogs.cnn.com/2010/06...sm-genes-found/

How is your son doing???/ how long till you saw an improvement??? if i may ask how old is he and what symptoms were you dealing with? Thank you for your information...

I said my prayer for your daughter.... i am glad things are progressing... and remember per Nancy D said it took her 2 1/2 months to see an improvement with both ivigs i think she said they were about a year apart...... easier said then done...i have NO patience...i hate this ride

was our only thing with strep till age of 3-5....then no eyeblink....just shoulder shrug/roll...till age of 5- 9,,,, then this last onset... now with illness i would say definate, moody, oppostiational....sometimes i wuold walk on eggshells...but not what some have had to deal with doesn't like change,,,now that i know stuff..he does have sensory issues..chews on shirt...touching things as he walks by...used to me more add/adhd ...but not anymore..... but all of these can be easily dismissed...and they were not a real issue, difficult when you see easy children...but my child is easier than some "healthy" kids who are just bad and rude

me too, as it think we are heading that way very soon....sadly.....

ps ..please remember to give probiotics...as now i believe we have gut issues that may be complicating things.....

yes you can have complete remission....we used to..i hope that is the case for you!!! if i could go back...i think i would(but as i write this..i realize i couldn' have found a doc to back me up) would be to keep him on a propholactic dose indefiniely... and at one point they discussed taking out his tonsils...i think maybe i should have gone for it

Stephanie and i are currently using the same doc... i asked the same questions...hes not concerned about s.therm...but i don't give...(just in case and there are other options) so i don't give yogurt.. i let ds have pizza once a week...i try to avoid soy i asked about calcium and my concerns and giving a cal/mag vitamin i believe he said calcima can have a stimulating effect and just give mag.... i belive i asked about lack of calcium and he said not to worry about that right now...i think... i think i am like the rest here...i ask questions....i write down as fast as i can...and some i think i'll just remember but the details then escape me SO MUCH INFORMATION......plus i'm gonna pull the ...i 2 other kids 7 and 3...and i dont remember if i ate today

another thought would be.....with the jaw being open it may be irritateing nerves that run from the jaw to the vestibular..(trigemital??spelling) there is a huge thread that's on the ts board in reagards to this.... i tried the mouth piece with no success....but i have spoken to 3 moms who have had success with it.....actually i called one mom acouple of weeks ago to follow up and things are completey healed...and if her son doesn't wear the mouth piece for a couple of days his tics start to come back...they have direct correlation... so maybe for pandas kids...since there is inflamation...it may just be enought to cause the same type of reaction

i know doc k said 4 weeks...so who knows.... the other thing is.....i wonder is maybe the aug did a little to hammer it...maybe the burst did a little to hammer at it now the zith is working... i wonder that with every case...all these treatements prior to the one that may be working.... or it could just be the zith is it that the cold is going away...(just like allergy season is gone) are all those that had some worsenting doing better... ...i wonder...

yes the tics change...the vocal has not left since it started in feb.....it changed in conjunction 2'x with vanco...less annoying but annoying....

in trying to find it i found this...maybe this will help too http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44414

sorry if someone posted already..doesn't hurt to revisit i guess http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44414

1st) please make many copies...as you hand it to each group/person....so it doesn't "get lost" in aiding your son and as many people as possible know what is going one 2)because you are dealing withe something that the state may rule as mental illness...i like doc k's wording and he talks abour aggression http://www.webpediatrics.com/pandas.html i hope this helps....there is a documentary somewhere ....about a girl who raged...and in between she's like an angel...and sorry she doesn't want to be that way......if you could find that one....i saw it about a year ago

for us vocal tics are the last to show up during an exacerbation & the first to clear up. for ds his most persistent tic is one where he pushes his stomach in and out. we just started vocals around feb...he may have had 2 days last summer but he also had a retainer then..and there were 2 days in december...maybe retainer.... they may be deminishing..but its taking long and i hate them the most..... right now its a sneeze, cough, popcorn caught in throat, ch,ch sounds how long did it take to clear for your child????

would you say vocals are the most difficult of the tics

I am so happy for you... i am glad you had a great family event.... kudos to you for being able to take it one day at a time.....i can only seem to project..and its probably killing me... you have been a great support...and your regular postings(as well as others here) with daily info (even if repeated) help me and others get through the day..

for the kielbasa fans....wellshires was actually good and i wuold have been vrey happy but coleman has ont ehat is better..

they do..called oreganol..oil of wild oregano....i think i got them fro iherb and i pricked one to put a drop on what looked like a wart on ds and i took the rest... some must have gotten on the coat or my fingers and it does tingle/ burn...not forever though..

did you ever write to doc t in regards to your new protocol.... did he reply??? is there a specific test for klebsiella?

I agree....and this may be the cause of ts for them but infection is the cause for someone else...or might just add to their allergies and have nothing to do with their ts.... though alot/most/all of these kids have allergies...it might just kick researchers in the behind, to look outside the comfy box, especially at autoimmune issues!!!!

awesome....are they,cheaper...apple's about $5..there is another brand at whole foods and they were good ...ranch something...they were $5 too...

I think this is huge.. from personal experience i would agree to at leat wait a couple of weeks to a month at minimum before steroids and remember to keep the abx in check...we needed to desperately add.antifungals to keep things in check.... I KNOW....when the fire is raging you just want to throw everything at it.....it is so hard to wait!!!!