Fixit

Hey Phas...isn't there a link where the board discussed uti causing neuro problems in elderely and possisbbly panda kids??? also..don't know if i shoulbe concerned...every test ...ds eso alway out of range...not alot...but always???

I'm begining to think so...and see no reason why the panda child would only react to strep ...if they have had prior myco p infections...i would think their body would respond by sending out antibodies and do the same thing in reaction to an attack..JMHO

I knew it was pandas when ds was 3 and no one would listen...just shrugged off the rolling eyes...as ds would always get abx and remit in full in 4 week period... this onset was was when he was 9 and would not remit and could not get abx......no one listening...didn't get formal dx till he was almost 10...we are still in episode 20months later....

Amen..ditto...i agree

sounds like you have alot going on...(variables) its also early...i know its hard ...and feels like an eternity....please remind me of these words sometime....

in brief...the only times i noticed dyes effecting ds was when in episode..he still is so still have to watch... when he was in remission...it did not seem to matter.... i noticed the step/tic correlation by the 3rd time i noticed the abx, 3-5day mainiac correlation about the 6-8 time... at first i was just happy he was recovering.... by the 6th time..i always wondered why..he seemed better in 24 hrs, but would ramp in wildness a couple days later...and then remit wildness about 2 weeks(because he was off abx for about 3 days and dyes came out of system) and the remaining tics were gone, gone by 4 weeks

Melanie...i don't even begin to understand lymes.. but if that med is indicated in treatment of lymes...(lyme indications ie..clear headed, back pain....) maybe you should investigate.....what the heck...your doing everything else you can do??? and maybe that might lead to some further healing for your ds...as it can be passed in utero just thinking out loud and again ....just thinking out loud....even if it's not lymes....there are so many viuses and bacteria that we don't know about....maybe the lymes tests(and/or symptomes) are picking up on those...and if treated, maybe things will get better. which lead me to the article posted about the insanity virus...maybe they can use the lymes protocal on that....

Besides trying the best you can to find any existing condtion...infection, autoimminne(ie thyroid, chrones)and parasties... being that your child always relapses in dec....it would lead me to low vitamin D... as we don't get enough in the summer with video games, and sunscreen...we really don't get enough come winter.... just a thought.... oh one more..trying to stay positive....i agree with checkin any posssilbe avenue..we are researching lymes a bit heavier too.......maybe like mom2two and nevergive up.....maybe the lower dose more frequent ivigs are the answer for your child....every person is differetn..... also...maybe this is just a blip...

Yes..he is in my arsenal...pm with any questions...

If this is just the start of your journey ..you will have alot to go test and experiment with... with the zith... when ds would completely remit..he would first have a great couple days...but i noticed a pattern...where day 3-5 he would start to run around the house is circles, bounce off the wallls....thats when i stopped using any kind of dyes...ie red... make sure your abx are dye free.... next zith can cause clostridia, klebsia, yeast...so you may be dealing with one of these now.. gtg...hopefully others will put some thoughts out

i think you mentioned this before...way long ago... what kinda of test is this... this is my son...i keep telling my dh that this is part of pan/pits.....

now that you said that...our school district offers it too...and good idea about getting someone else in to prompt this... in todays society..we spend too much time with our kids...if they go out and play...you have to go too..theparents don't get the break they used too.....it is not good to be with them constantly...so maybe get a college kid, who is looking at teaching as a profession to tutor mid-day... i liked mid-day jobs as a college student...i could party at night.... plus if its a girl tutor...i believe he will have more motivation!!!

idk...everything i do, has to be done 5 more times..gets lost in the mail...forgot to order it....it's exhausting... i am sending the blot off today, as we did last urine sample... i called a different lyme doc last night...waiting to hear back(a different male md(lymes) doc in ashville nc and i'm hoping another forum mom is sending me some info for a doc in NY.... i think i am going to get some blood work done for me....again i don't think i have it... but i'll have them draw my thyroid..check strep titers, myco p, and ask for a cd57...if i do have it..then regardless of ds results i would believe all my kids have it(from what i 've read)and really push harder.... we are ready to move to something bigger .... any thoughts on anything else i should check for in regular blood work... dh is getting his tonsils out at the end of the month!!!!!

That was very well said...i understand what you are saying..and i hope that for all our kids.. Joan..if you are going to pull your boy out of school...look into homeschooling so he doesn't loose that time...like you said...how are you going to fill the hours anyway....and if you don't keep him academically challenged you will loose what you were taught...ever see...smarter than a 5th grader...so many on there cant keep up with the 5thgraders.... so maybe you can keep him on track....just a thought

yes..i would like to know too....???? as i am on my own trying to challenge the dot blot test....and started my ds on andographis..and internal parasit forumula containing..cloves, black walnut hull, wormwood, milk thistle seed, wasabi extract and enzymes.... i don't believe my ds has lymes but unlike alot of docs..never say never...

ds got braces at 8...they did not cause a problem... he did have 2-3 episodes during that year that remitted with 10day cours of abx.... this episode started 1 month post removal of braces....(no i don't think that was the cause).. ds also had a filling they were watching...(i din't know about) that fell out about2-3 months later... and i believe that ds and ds3 both had myco p at same time.... but now that we are still in episode....any tooth related thing sends him..ie loosing teeth, dental work.. pray, as i am walking out the door to get all 3 boys teeth cleaned....

Joan...we have not done any big guns to date... And in responding i have no personal experience...but if i need it in the future, i hope others will respond in time of crisis...as it is hard to see things when you are in the thick of it.... i believe you said things were ok for awhile...they will be again!!!! and most here, who have had ivig, have a worsening before betterment..... and you are ill.... you have alot going on!!!! i am personally looking at getting help here...maybe a college student to help with homework.and a just having an extra set of hands, as i have 3 boys, 10 and younger...i feel i am neglecting them and my home on so many levels..... even though they are doing well in school....i feel they could do better if they had a little one on one time... and though i don't feel like spending more $$$ this will be short lived and we can stop when and if we have to.. YOu can do it....i would love to give you and your boy a real hug...but i'll give you a cyber one for now (( ))

UMMMHHH..yes he is...and now triggered, strep may not be the only trigger going forward... tics are pandas sign... my ds only had simple tics that would remit 100% with abx... now they are complex and never ending and tiresome....i wish we could live on tapers(bursts seem a waste...if you are going to test with a burst...you might as well see if you can get remission with a taper..JMHO)

you go back to doc L and i have no doubt, if they come back...she will try more abx..w or w/o titiers.... or you can try to go to local ped and see if you abx for something that might show up now that tonsils are gone.... i think abx are first line of defencse with quality pandas doc..

just voted... 1 abx 2 yes

correct..100% is possible... glad i can be of some use..(to make those aware/vigilant).. wish i wasn't here at all.....even though i keep good company here

We've been using it for the last year while DS has been on antibiotics. It's great, especially with respect to the fact that it can be dosed at the same time as antibiotics because the abx doesn't kill it, and because it's very effective against diarrhea that the abx can cause, too. "FloraStor" is our favorite brand, found behind the pharmacist's counter. just trying to be double sure..... i asked at herbal store i go to...they said don' t do that....i asked as i heard you can and it is very difficult to get all the supplements in during the day... giving at the same time doesn't create die-off... it doesn't waste the abx by wasting its time on probiotics as opposed the other bad bacteria.... i would really like to dose this at the same time too...just very hesitant.... thanks all ...that was kinda what i was looking for.... ps...i also take all info...expert or not with grain of salt

We've been using it for the last year while DS has been on antibiotics. It's great, especially with respect to the fact that it can be dosed at the same time as antibiotics because the abx doesn't kill it, and because it's very effective against diarrhea that the abx can cause, too. "FloraStor" is our favorite brand, found behind the pharmacist's counter. just trying to be double sure..... i asked at herbal store i go to...they said don' t do that....i asked as i heard you can and it is very difficult to get all the supplements in during the day... giving at the same time doesn't create die-off... it doesn't waste the abx by wasting its time on probiotics as opposed the other bad bacteria.... i would really like to dose this at the same time too...just very hesitant....

Am i doing enough with the herbs to kick up some activity? when i read band 39 is indicitive of bb...does that mean barbesia?

well i didn't vote yet..maybe you are looking for something in particular..so i don't want to skew.... ds always USED to get 100% remission...all 15 times..roughly 3 times a year...(never in the summer) this onset was age 9..he is now 10,(11 early 2011) the sweet spot...i think for the chronic condition...we have not recoverd and it's been more than 1 1/2yrs... we are trying one or 2 more things... trying to be double sure it is not lymes before we go big gun... so not sure if i should put abx got us to 100% or that nothing is getting us there now..