Fixit

we are on a taper...we are in the 3rd week...20mgs, drop on thrus to 10 mg... can i give hime advil or ibuprofine or tylenol...

Terrible isn't it...sorry you are having a tough time... i wouls suggest you start a new topic so it might catch someone who might know

to add...can the response be good early in the day and then fall after 4-5 pm... we are usually good upon waking and as day goes on this get worse...by 7pm i want to go hide..well

as in,,,he used to wait 6 months as some were recovering 4th 5th month

i am of no help with the info you are looking for...but can i ask how your dd is doing after her 3rd ivig.. are you seeing progress after each ivig....? are you still doing monthly or taking a break...? was there something that doc b is saying monthly and not waiting at least 2 months... i believe EBV is treated the same as lymes as long term abx are needed... that is why the steroid may have agrivated things???? also could some of your reactions be herxing??

i saw a special on something like 20/20 about 4 years ago or so on celiacs and seizures... they thought their child had some other condition for years was in special ed classes..long story... finally at 4,5, 6 years old, don' tremember she videos boy....doc says seizures... so they go to put on seizure meds...she decides not to at last minute...asks...why is he haveing seizures!!! celiacs...that poor kid lost so many years..... Caryn posts on the ts board...she has a website, board dedicated to this..she has alot of info!!!

Wonderful update...thank you for coming back to tell us!! I wondered where you were and how you dd was doing....Good Job

So sorry you are here..many here will help you running out so short answeres 1 yes 2 they could be..you may need to do more or a combo 3 any combination or single item (as we are learing more and more and remain open minded) 4 it may help..it may not...it may make it worse...others may answer better on this...my ds tics how old is your dd?

for instance....if you child responded in 2 days to the steroid did ivig kick in the first week.. or if you didn't see response to streoid for 3 weeks...did it take 3 months for ivig to get started?

i just heard from someone that doc k used to wait or want to wait 6 months...but changed to 3 months???? that would be interesting and hopeful...as in, some may see recovery 6 months out...but for those patients, he maybe decided that a second one sooner may boost the first...any thoughts or info on that??

Yes those are blood draws...and get tested for mycoplasma pneumaie igg and igm...i would say those are your starter tests... IMHO.. its all pandas/pitands... in your particulare case his condition could have been laying dormant till you had the vacine...but in reality at this point for a lot of people, many never know the exact trigger...the goal now beccomes to see if you can find something irritateing his system...and find his particular path to recovery...

yes...i often wonder if strep or some other infection or gut issues help to create some nasty people..bad temper, lack of restraint in saying mean things.. they can seem normal,,,but once the adreanalin kicks in it triggers other reactoins, responses...

AMAZING!!!!!!!!! JOY!!!!!!!!!!

when i did burst, i started abx at same time...,,,not to scare you but ds started new tics and now i know that yeast is a big concern around here....but day 21,22,23,24 were so good..better than pre burst abx.... i emailed doc k and asked which was it the abx or burst...he said... it doesn't matter....i'm looking for a response... than after we had complications from the abx and realized increase in tics was from yeast and the joint pain from fungi.. (quick note we thought for years ds was allergic to penicillian...not...it wiped out everything letting yeast and fungi grow..giving muscle,joint pain..start of vocals)

there is a center near atlanta.... we were denied ivig...we are waiting at the moment to see other docs.... ...it kinda makes sense the hospital maybe over charged.....if thats the case i think the dan we use in fl is reasonable..and if we go ivig we may just do with him at least firs go round...expecting we will need 2-3... but if the price diff was significant..i may reconsider do the first one in area.......but....again..i would pay a little extra to do with someone who knows protocal for pandas well...

sorry if i'm repeating a question... circulating immune compleses??? is that the name of the test or does it go by some other name???

So you dropped the mino... doubled up the azith... and he was already on sigular is it possible to ask her to push it out a week.....to see how it goes....maybe the low doses are doing someing....are you trending to the better..or are the rebounds worse than.pre ivig... but if you push out a week be prepaired to have cranky kid...it's usually the last couple of days or the last weeek where he seems to slip ....right? I am glad you can see your real child!!!!!!

WOW....Thanks Micheal!!!!

OMG Steph...it sound like you are laughing, about ready to loose it....or that might be me Dude this totally...s(**Y&s!!! did this just happen over the weekend??? WHat does scott say!?!?!?!...what about 2-3 days of pred.....i'm not a doc..or have more expereince than the docs we deal with... have you ever consulted with doc k....maybe shoot him an email....lets get the 5 yr back on track.... is he sick that you know of????

Can i ask what info you think she has or you have given her that she is adding/upping the azith.... i need to get my guy to try same....

I'm glad!!!

Your pandas explains your condition... Your aunt being a real pickle has no explanation! And yes.even as grown up ...trying to explain to peiopole who can eat what ever they want..or think they can eat what ever they want and you see they or their children have somthing going on.......will probably always be an issue...

yes it was the igenex test that came up with those bands... and i do relaize that band 41 may be a marker for any bacteria/virus with a tail.... .maybe as per what pmom is saying....maybe for my ds it is lymes...or maybe it's not and is some other "thing with a tail" that can be treated with a lymes protocol..but expresses outwardly in our pand/pit kids.... so..i just got an emial back from our doc who doesn't want to increase our abx to axith 500mg per day(currently we are only on 1x a week 500mg azith) as we are having some progress on the taper and he wants to wait that out... but as per sf...following the lyme protocal..is getting rid something maybe we don't have a test for????

I haven't read all the posts.... Scooby...sorry you are here, but ALL the people on this board are wonderfull.... Don't be scared as there is SO MUCH info and it will take a long time to make it connect...keep asking questions!!!!! WENDY...that list.. .i think ds has had 4 out of 5 on every sub list even if it was 1 day or 1 week...but that could be to some other passing illnesses too? or normal experiences ? DS band 41 came up pos with 1 + on both sets of paper work....and band 39 was ind one set but neg on another.... OUr doc said not to worry about it.....THOUGHTS!?!?!?

I can't answer this, although I think the answer is yes - I think some here have posted about using it during and after. But in case you are not aware (I'm sure you are!) you can't "quit" a 30 day prednisone program, you have to taper off, as the body stops making the right levels after about day 5. After that, you have to allow the body to build back up while you taper off the medication. the right levels of what.....? does the taper have a better chanc of making the results stick?......or, you may not get a rebound effect, as the tapering helps modulate down....? when we did burst...we didn't have our gloriuos 4 days till 21 days post burst.... if you do a taper, (we started to see results day 9 this time....we are currently on day 12) can things continue to get better.? i keep hearing of people tapering down and problems increasing... anyone have continuing progress..again ours didn't kick in this time till a couple days after we dropped dosage PS the first week vocals ramped up but now we are better than when we started!!!!!(yeast?)