Fixit

Thank you for the info..please continue to update. Best to your DD!!!

great job steph.... so you are basicly saying ..that at this point ,,dropping abx one week and it is statis quo on both boys, as they are in same exact spot as the point you stopped...no better no worse....just making sure i know where you are.... thanks for keeping this public journal if so want to continue!!! as you know with ds...i have been doing the circle of doom too...abx, probis..yeast..dyflucan,abx... so i have really paired down to the min at this point and also ds still having trouble swollowing.... please keep us posted

just out of curiousity...do you give your child vitamin C.... what about quercitine a dirivitve of grapefruit seed extract...... do you give pears or apples if they are peeled and what about the processed fruits...like apple sauce... ds did seem to have a saclicitae issue....fruit made his mouth itch.. we added quercitine...and it seemed like he could eat an apple or a pear if it was peeled hope you get this...thanks for any info...

Though i am sorry that your child or any child should be a part of this paper/study... i think it is great that doc m is willing to look at younger kids...i think they all do...but maybe now that we are getting some traction..we can push into the other realms... and yes i think it can be just more than terrible 2's... thank you for posting this and thanks for possibly letting your child lead the way!!!

ds had braces put on at 8 years old...did not cause episode... we had 1 or 2 episodes while braces were on, that completely remitted with abx as per his other episodes... we never did abx with dental work...never new or thought about it..... 1 or so months after braces came off we entered this last episode that has been a year and a half.... ds did have a filling fall out soon after that was infected...but also ....his baby brother had myco p which i now know and so did ds...don't think for my ds braces were ever the issue... on you second guy...could be compulsion... but i did do the tmj thing for ds...it was not an issue...but if you look at dr stacks or dr sims on tmj..there is a kid who has something similar to what you mentioned that the mouth gaurd worked for.. just a thought...

i'm sorry,,,but... ....i needed that.....that is too good...it's like a movie...when someone gets hypnotised and every time a specific word is said they cluck like a chicken oh..my....still laughing...but i hope you are not hurt or bruised

Agree!!!

ds worsened orignally on burst then we had a gift of 4 days, 3 weeks later... by the time we did the taper we had been on several abx long term off and on ..which i think is crucial in these kids...and even though the majority of his trigger may have been gone already.. maybe he had other subclinialc struff going on.. the other big thing to watch is yeast with steroids..and maybe that was the headache.... i would need convinceing to do a burst again...as to why that would be better than a taper.....the taper was so great....and i think may give the possiblity for a holding effect.....where as with the burst you a more likely to get a rebound effect...like a rubberbands and snaps back exactly like it was or worse for a while.... just our experience...

so you need the protein..but avoid arginine in the form of supplements??? or are you saying protein is ok in the form of food as the body breaks it down in a more natural delivery system?? not sure if you understand my question??

i am getting concerned about the long term theory with abx and strep still coming through... the problem i am haveing..and so a word of caution is yeast... ds had tonsils out friday and last night i saw thrush...so we are going to ent this afternoon... and it seems to be an endless circle ...to the point we cant be on any abx w/o diflucan..... this cannot be good.. in past ds would remit on 10-14 day couse of abx and get 3-5(5 being the longest) of remission... if you are getting breakthrough every 3-5 months anyway...why not give the gut a break.... i would like to hear thoughts as i am very concerned that i can't break this cycle for ds ... and i am wondering if the gut may be the actual(only) issue at this time!!!!

wornout and iowa...i am so sorry for you an your children.. we know they are in there... maybe it would be of comfort to tell them there are a lot of parents and docs working on this every day..and every day..we get one more tidbit... have you looked at gut issusees ..clostridia in particular...you don't have to be hsopitalized to have it...just like people walk around with strep and odn't know it... just a thougth...all are in my prayers

????? if you do the math... the regular flu shows .0683% effected h1n1 shows .0594% effect that would be less??

we are here peg... you will get someone to help... try to be calm till the phone call... i have a long list on my prays tonight..your dd will be there too!!

well i guess i'm asking more from a panda/pit (dan) aspect.. vanco they say 14 days then done..but a dan that betty uses says do your 2 weeks then ween off over the course of a month...i guess to not come back into a life cycle.or maybe rebound...idk the aspects of it ...trying to understand... and thanks for asking... i can't even type as i have goose bumps on my arms...please don't ask more right now..i think i'm dreaming and don't want to wake up

ds had it in iv on friday..we started dosing 3x a day at 150mg..he weighs 75-80... we have 7 more days to go on this how long can you stay on this...? i read it is used when treating things are vanco resistant... that being said..betty04 mentioned per her dan, that you should not stop vanco cold turkey but ween off over the course of a month..or clostridia will come back... are there other properties that clinda has ie anti-inflammaorty, immune modulating.(other than slowing bacteria) i want to make sure when ds comes off it is the right way...i think that it is crucial... anyone with info or the abx informed PLEASE responed......

when ds started it , it was like we were in a leave it to beaver episode...good moring mother...well hello son,..today is a nice day,don't you think,....well i couldn't agree more..... i can't say it helped his immune system..idk i re-added it a couple weeks after the taper and it may have to gotten us to anohter notch... but i don't know it holds..if he just starts failing or is his system gets used to it... what i'm saying is that at this point my sons system can't seem to hold gains...i can't blame it on anything in particular

bronxmom....i don't know if this would help..but i did do the brain balance program for ds...it is pricey... ..i do think they have success with add, adhd, and other such issues...they claim to help ocd and ts and autism......and of course when i came in with possible ts they were a little gun shy as i think that is the one area the have the least success with....... the premiss is that the brain is not developing equally, right vs left hemisphere....maybe this is something that needs to be addressed once our kids get ill.... ds did have some adhd tendencies..nothing i would med for... when i did the program...it was for the tics....they did get better...not cured...they also integrate diet..high aminos, vitamins, food restrictions(this is when we were on the taurine) anyway...the one thing that did happen was his a.d. remitted. or maybe he just got older..but it was only a 3 month program...so idk..... i was a drill seargent...3x a day for 1/2 hour ...gfdf.etc..if i'm paying 6k ish..and more important his brain is only young once..i really wanted to attack this mind you ds has (knock knock) had academic isssues otherwise...even now as i try to get eip or 504 they say they can't do it because he is excedeing all his classes!!!!... i said yah ....but where would he be if he did't have to find his place on the page every 10 seconds(this is when he had severe head tic)... just a thought... there is also a place called the handle institute and they have some exercises on their page maybe check some add/adhd info...just as we see things cross the boards from ts, ocd and lymes this may be another.. and just like some rage with pandas, some become internal....so maybe add/adhd can express in different ways too???

wow...not that i would get this but if i get 10%..maybe that would be good??? or just raise more quesitions??? thanks for the link!!!!

my 3yr old got myco p(thouh no confirmation..did have ear infection that he got treated for and breathing problems he got a nebulizeer for)...i am certain the same time ds started this episode...the cild was 2 at the time.. he became very fussy for 3 months,prior to that very easy going....then kinda snapped out of it he gets fussy off and on... i'm in the process of getting evreyon tested for everything..so i had his blood drawn for strep,(neg) thyroid..(normal but at extreme hight side..hypothryoidish)..myco...igg (high..double normal range) 3 yr old started very slight blink...in bright light, watching tv..late at night..... i thought ..no, no , no...took to dr a couple weeks ago...made up a story to his getting up all hours of night..and other nonsense....i said please check for strep....(he was actully fine..playing running, got up 1 night, i went to check on him and i just walked out of room as he just fell right back to sleep)... any who, he had an ear infection...that night gave 1st dose of abx.....next day..the blink lessened markedly....now gone..... so...here we go!!!!!

Melanie ..i've been feeling your pain... But.it sounds like you have a real pattern going..and the 2 weeks is interesting... maybe this 2 week thing will pay off...

correct...we saw him in august before our trip to the docs...i said i want them out..he said get a letter from you docs... in meantime dh changed jobs..and so weird that by time hipaa cleared..i could get appt in oct/nov ...i asked if something sooner they said friday.... ..so i said this morning no nitrixoide...they said, fine we weren't anywahy..then askied.why i said that..you don't want him to throw up...i said yah... then doc meets me before surgery..i said you going to biopsy and culture...he said no just biopsy...i said could you please culture..he said ok..can you report their condition when they come out ..ok comes out..both he and the nurse talked about how of course they would like that with his history with chronic infections....(oh and slime on his atnoids..couldn't get them to go back to that statement) i didn't say anything about how he didn't want to do it earlier..and make him eat words...as when he also met me preop he went on to almost say that my dh ...who he met yesterday to get tonsils out...just on presentation....i could tell he wanted to say, looked discusting!!!!! i asked how far out are you scheduling he said 8 weeks...!!!! poor kid has vocals..he's trying to surpress...i didn'w want to wait,as who knows how long this would last anyway.... spitting up/out alot of thick snot..is that normal... i don't know how he'll be in the long run...but i would regret not doing it and they aren't helping hime at this point...i think it would only be a plus... nurse there had her's out a couple years ago...she said its the best thing she's ever done...she doesn't get sick anymore..... so i hope he sent out culture like i asked!!!!!

at approx 2.9-3 year old ds gets sick..fever not right..i let it go figuring just sick..(he may have thrown up once)...(sorry to repeat story again)...i have never had strep...a healthy person...i figure it will pass..... about 2weeks the eye blink...i freak..the doc says i don't know about tic...probably transient...don't worry...but he does have strep then again...sick not feeling well..a week or so goes by..in comes eye blink...i run to doc...says again idk about tic but he has strep.... 3rd time(son still 3)...son fine, playin...just start eye blinking one day...i ask ds a bunch of questions...he finally says yes mommy my throat hurts... take him to doc...i said doc he's ticcing and his throat hurts...do you think there is anything to strep(which was pos again) and the tics....he says "no mrs X,,,just a coincidence)!!!!!!!!!!!!!!!!!!!!!!!!! THis was 7 years ago... so i started to research..i did find pandas then.ruffly 2003.. so as it would reoccur..i mean the tic would come first, then i would go to doc to find strep and get abs.. ..i asked docs about pandas ..he said no such thing..never heard of it..etc..(different docs in practice..we also moved)...so i stopped asking... thinking...i don't care if they believe...i'll get the abx..and he's better the next day..50% in 2weeks and 100 in 4(abx were traditional 10-14 day doses) then at end of 05ish...ds tic changes to neck roll...post strep...this is once we cant get rid of...we change extend amox...he gets joint pain..we go to hospital..they say hes allergic to abx..change abx and give steroid burst... he comes out of it in 6 weeks or so.....i am more upset... IT's time to see a nuero.. of cours its gone by that time...they say transient tic...pandas isn't real it' like i'm asking if they believe in peter pan... this is when i started to secretly watch this site off and on...obviously..on when he was sick..off wehn not so we continue to get sick about 3 times a year...continue to remit in full... the last couple of times ds ticced...he would not swab pos..but at presentation, docs would say with his history and that throat..let's put him on abx onset at 9 was the jumping thing,,,my heart sank..i knew it was going to be different this time...it's been 1 1/2 years..we are trying to find the right locker combination for ds... i am certain this time it was myco p...a doc did give a script at onset..(we wre in fl) for cephlexan, for 10 days.. and it was almost a full year later till we saw the myco p igg and got biaxin So in short/long...i jumped on it every time...i think after 15 episodes, the last being myco p..it went autoimmune....steroids do help in long run(but hasn't lasted) we went to 2 more nueros in 2009...pandas not real..he has ts...F you know what.. he got so bad i went back to nuero to get rx for cholindein... i couldn't fill....IT felt so wrong...and if i started that journey..would i be able to uncover what was working the core of the problems not the expression of the problems.... ds has had some very difficult times...the rx is pinned to my bullitin board... too old to be filled now...but it reminds me i don't need to go there doc k, t, l, b all give pandas dx i've also said for years dh, who has a slight blink and nod...gets better on abx...he is adult pandas..i have no doubt as he gets strep a few times a year still.. doc just saw him yesterday..tonsils are pitted beyond belief and will be coming out soon...(ps dh whole family has history of strep related autoimmune conditions..dh only ticcer..not the other problems) dh has been on abx for six weeks...his skin looks awesome...i am now however concerned about lupus .. Ds just had his out this morning...ent didn't want to take them out..looked fine...took them out...pitted, inflamed, red, stuff on them..atnoids/and lots of mucus coming out... i wish i had taken them out when he was 5, doctor mentioned...i don't know if we moved or what happened i also don't know if i would have put ds on long term abx from age of 3...and from stories on board strep can still break through... So what do we do with this desease???

All i can say is..i understand... and you do have to line things up continually ..some are months out...some get squeezed in...then the child gets better/worse/reexposed/in house exposure. if you treat step now..i would hope a majority of it would by gone by pex date.... i don't know this part...doc l doesn't recommend pex if kid is sick....i thought some go in for emergency pex and they would be very ill??

i agree..i like the way you think...

this is what i'm saying about the score...how is 120 different from 117 or 105 for that matter..something isn't right..you know/knew that already...but your waiting on the number to tell you??? this is where this study scares me..if it becomes the determining factory so if your recovering son gets to 117 is he not pandas anymore..is he fully recovered..i dont' think so and i think you will still be seeing things ds' 1st was 105..i could have told you he was pandas as he still wasn't right..some tics...i think the number has to get to what ever normal is to be a signal that all possible triggers are probably gone did i really need to get to 160 to say i told you so???? And this is in no way aimed at you worried dad...it's just a discussion/a thought