Fixit

I think our last messages crossed! I love your optimism and your science. I don't dispute any of it. I guess, I was focusing on the problematic social component of all of this business, which can poison other things. Maybe I'm just not as forgiving as you. I've watched my child's brain deteriorate before my eyes, while everyone around me said it was either my imagination or my fault -- or both. Before this illness, he was loving his life, and was the star of his class. Now he's living like a miserable mushroom -- can't read/write/draw, can't speak, afraid of fresh air and sunlight.... I'm thrilled to hear, somebody somewhere gets it, and is doing something about it. But the long series of doctors we've dealt with over four years sure didn't get it. And, in fact, they downright blocked any possible path to help. We were black-balled. Damaged goods. Tried to get to a different hospital, but who would take us, when the point of departure was a worthless pile of prejudicial bologna from another hospital?! If we hadn't been fortunate enough to break out and find a private neurologist who had the brains to recognize what was happening and the guts to officially say so, I might have lost my profoundly neuro-immunologically sick child to Child Protective Services. I am not exaggerating. Re. "Mystery Diagnosis" -- haven't seen this show, although I'd like to! I will say, however, that there are various degrees and levels of mystery. I don't really buy that PANDAS cases are just as mysterious as every other odd illness. Four years ago, my child had three rotten infectious illnesses in a row, then a few weeks later became psychotic, suicidal, anxiety-stricken, suffered urinary accidents, weird collapses, altered sensory perception.... No doctor, including his pediatrician since birth (who used to call him "Dreamboat"), would touch him with a ten-foot pole. We called the pediatrician's office repeatedly, to report what was happening and ask for help. One day, the annoyed receptionist said, "You've dialed the wrong number -- this line is only for sick children." The fact that we don't thoroughly understand the pathogenesis of an illness should not prevent us from doing whatever we can to help the victims of the illness. I think PANDAS kids are being cast aside, because they are so easily classified (by a stupid system!) as "psychiatric" cases. When -- oh, when?! -- will people (including doctors!) learn that the brain is part of the body?!... Tenacity I am sorry you had to go through this...Truly i agree the majority kids are easily dismissed/or slip through cracks...or pigeon holed as this/that or the other...because a parent couldn't possibly have any clue as to what may have triggered their kids condition ,,,as they don't know...they don't know because the haven't been listening to the few observat parents who put it togher.. before freud seperated the brain from the body, docs would correlate most neuro problems..not just sc and rf.... to post illnesses.... we have to change an entire industry, back the other direction...a very few are already there..even if you said there are 24 panda docs(and lets say 10 of them are specialist or at least the best versed)...that is a drop in the bucket if you think of 50 US states, all the doctors, hospitals,phychiatrist, pa's,neuros....and these few still have to buck the system... on a good note it is coming!!!!!!!!! i think you should print the NIH statement and walk into the office with multiple copies and 10 other studies for the special receptionist...i'd like to go with you!!

fat fingered

i thought i was lower...between 85-95?

Ditto!!!

just looked up drano test...no one is pregnant!!!! this is a test we have done many times...with the same results each time...me and boy2 normal..dh and ds1 stringy foggy(panda people) if it is candida..i know it is hard to clear...may take years, like many conditions we talk about here.... and i admit this has not been at the top of my list to work on..but maybe should be....

Meg's mom just start this thread http://www.latitudes.org/forums/index.php?showtopic=10256 get water from tap and let it sit overnight..cannot be fresh water...i put 4 glasse out on kitchen counter..(i have a 3 yr old that will be included in next testing) and we do it as a family thing and talk about how gross it is(all boys ya know) brush your teeth at night..... in morning..do not drink eat or brush...just spit...and in seconds strings or foggyness might appear.. or like myself...it just disapperas(normal)(i keep telling people i'm normal all the time )

just to play devil's advocate... are you sure??? have you done the spit test in the mornings..... maybe yeast problem doesn't have to be a full infection..more of the flora being off... myself and other child fine on spit test ...always... dh and ds..spit test always off...dh is much worse than ds..but still a little

I understand not wanting to come here.....But.... Please come back occassionally to update us on your family's healing.

Can you expand on that... is she saying its a life long maintenance thing.. or is she saying that a pan/pit kid will eventually need a big gun..ivig/pex

Thanks for posting this... i've been checking dh and ds for 4-5 years and they consistantly show yeast..myself and other child-no so i wonder if there is always a yeast issue...more so for dh than ds...if that makes you more suspettible to other ailments/allergies....as something is out of wack.... the main reason i thank you is ...the part about parasites...i did not know this.... i think the spit test he did a month ago had the bottom dwellers????? will have to re-check

i am happy you could find a little peace

not surprised...been dealing with this for 7+ years..... not until this year have i been able to get docs(of course the specialists and 2 dans) have i been able to get help...i now a ped here who is pandas friendely, but would not prescirbe long term or high dose abx....he is inside the box and only follows guidelines....but is intersted... for treating pandas...i use 7 docs as this desease takes a team..and all have new ideas, tests, and only a few have big guns available.... i think relying on 1 doc only may put you in a bind on many occasions and not get you down the road quick enough... and this is a slow road to begin with.....i can't wait a week for a doc to call me back...or schedule a phone consult....things as you may know, go from 0-60 with no warning and ultimately ...unfortunately...we are the captain of the ship...as each ship(child) is different

just asked hubby as we used to live there... his sales territory included pa, nj, ct, ny, de he said you will probalbly have a hard time as most of the pharmacueitcals are in pa... just like i cant' get a lymes doc in ga since cdc is here....

Can you ladies explain the problem with GSE...??? Ds was doing relatively well..if you remember....we were sliding between 90-80% improved from doing taper.... then the moring i added 3 drops of GSE to his drink 9/7/10...he came home from school screeching and jumping??? could have been pollen count jumped from 13 to 90 ....we were outside bike riding the day before???

you definitley want to do the one he mentioned..as it is correlated with other autoimmune conditions.... our ds was scarey high.... i would ask doc r..if you were to pay a little extra, which does he think would be the most crucial

That or another grown up who isn't his parent... JMO...ds had tonsils out 10-11 days ago...a good thing.....

That may (or may not) be linked to lymes..but are not willing to do a study or treat with abx as it is their best interest to not loose face. It too obvious to be true, to suggest that some infection or parasite may be at the root of most of man's ills.

i was just speaking with someone about this topic... who says 1...who gets to make that kind of call??? we are still learning about this condition..... maybe if child young and caught early,,or that is your predisposition others may need more, again depending on age, duration..relapse..how insiduous, personal genetic make up..... though there may be other things going on in the individual that need to be addressed.....saying just one ivig is all that will ever be needed, is almost as bad as saying no such thing as pan/pits... we have not yet done a big gun....just my opinion ...and i feel i have enough of a general/some detailed knowledge, to realize the vast width and breathe of this desease....still too much to learn.... i don't know if 2 will make it worse...again..i think genetic makeup comes into play...and spacing between doses

i like your explanation...and its' easy for us regular folks to understand

I agree too... And want to thank you for sharing this with us TODAY!!!

STEPH!!!!!! I am so happy for you!!!!!! and the time frame was quick too!!!!!! that is quite high...i just looked at the ole i gave ds for a long while.. it is 500mg but only 6% oleurop??? i was only giving 1x a day too.... so your dosage is quite a lot higher have you thought about tea tree oil for yeast..lady at traders said to use when brushing teeath and i thought that GSE was supposed to be good at treating yeast....???

Thanks for typing the details again

just wanted to give you some sort of answer.... yes it is possible that abx will work after original onset has been some time...and not specificly strep... however...you may need more than stardard dose in terms of measure and time... you may also need to change up abx..regardless of finding a specific infection... there may be co-infections,,,childs reaction...and the length of illness..that you may not realize....

so are you saying that the myco is there first....and then the strep comes along and sends it into overdrive.... as in ...myco p is always in the body unless you really clear it with long term abx(perhaps 3 months at min)..and then the strep is the secondary issue for pand/pits.... i would buyt into it...how did you or your friend come up with this....assuming i got it right

nancy ..can you expand on the highlighted part.... was that 2 years after the 1st ivig..... it slowly faded over 2 years??? did you have another or the monthly ivigs at that point... not that i want anyone's healing to take 2 years...but it certainly puts a different perspective on expectatoins!!! THanks NANcy D!!!!!!!!! PS..i don't remember if you mentined who your doc is for semi annual ivig... and are you gettting covered by ins>>>> also..another thought...if you dd can susstain...will you push out ivigs..7 months then 8months etc... thanks again