Fixit

if i can expand on that thought..i agree with once you preesent with a condition, the cause cause may be unlimited(what ever infection, autoimmunune conditon the cause)..but i don't think because you get myco you rage, strep you tic...i think each individuals presentaton is their presentaton no matter what they get.... there can be some of a specific germ creating a specific response..but then we end up just like the docs who say strep only causes rf and sf ...no such thing as strep a causing neurological issues..no other presentaions allowed..(and look at the poupori of symptoms we pan/pit parents say we have).....i think the causes may be unlimited and presentatoins as well. JMHO..

can you tell if the ivigs helped his asthma??

i would suggest it.... somewhere and i think it should be on your lab work.. once you get myco...your igm may not rise again on reinfectons.. what for rising igg... ds igg went down..but it just went up a little...wondering if it is still an issue here... but it wasn't a lot...so there could be lab error and such...i will retest in a few weeks...

Hope someone chimes in and helps. It has been posted numerous times and I can not seem to find it either. real quick.. i thought it was bad... we started both at same time and things really ramped (though the steroid did give us 4 really great days) we rebounded back to the bad point...in our case allergies have to be considered too.. if i could do over.... do biaxin 30 days... then do(jmho) a taper..if you don't think biaxin had any effect...if it does work..maybe retest to see myco p levels or extend till you stop seeing improvement...then taper...(i am not a doc...just my experience)

are you still on cytomel...i says to only take for 6 weeks at a time.... do you cycle on and off.??? did a doctor prescribe this for you

Sorry i wasn't talking about you... i was saying i wrote a long winded story... i forgot the I

wrote long story..you are fortunate it got erased in short..yes ds' allergies trigger this...it does feel like it is biting and then feels need to pull... of course ped rolled eyes at me when i mentioned pandas, trich...but she did prescribe shampoo with selenium..higher dose then selson blue..but maybe you could start there... she did see his scalp looked scaley..i didnt see it but she did..so maybe its minor...but it was only the last 2 springs...and now it happened just last week or so...sent ds to shower..in the morning of his own fruition....said mom that shampoo realy works....i also started using quercitin that night for allergies.. ps..ds has had strep many times...it can be strep induced...step pandas may go away but other things can trigger it

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG. And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days. Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise. Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!! I have also seen slow, steady progress after an exacerbation. Truly the "saw tooth" pattern that Swedo talks about, with a sudden rise in symptoms with an exacerbation, and then a slow reduction in symptoms. However, when I see the "backward" times... if it is more than one day... then it usually signals in illness for me. It really is not strep for my son (from what I can tell). It is more likely allergies, sinus infection, or a basic cold. Last year was H1N1 and that was the start of a very long exacerbtion - not just a little blip. can i ask all you how long you mean by slow... the taper ended 44 days ago..at day 42 i was ready to post we where 85-90% better..and then he walked through the door .and i would say we had sawtooth with that..though i have had to address allergies... and 2 days ago i think clostridia came back... are you ladies talking 3-6 8 months to recover???? i'm trying to figure it out...because prio to this onset, as i've said a zillion times..i would get betterment in 24 hours..almost gone 2 weeks and remissio in 4 weeks.....I WAS SPOILED!!!!! So my expectations are way off(i think,hope)

So great......don't be scared...thanks for letting us know...we just became C member's a couple of weeks ago...i'm trying to push paper work to prove no lapse in coverage.....i'm nervous that somehow its' going to get messed up!! And doc L got on the phone with them?? can i ask is your child in an episode now...??? and what are the presentations??? And one more....how long have you suspected pandas??? Thanks

This is great to hear...can i ask if you are dairy free too??

how do you get the 3's w/o the 6 or 9...all of the oils seem to have them as they blend..... also need to watch the ratio's ..i thought a higher epa was preferred..and that maybe for mood..hence the terms..mood bright..so that would mean stimulating...(don't want to stimulate a ticcer) our dan said get the equal blend or a higher dha ratio... would still like to now your ration on the omega 3 you use

i posted this yesterday on a thread i had started, as on tuesday it looked/s like we are having a significant relapse...(screeches/hoppng)...now concentration we had done a brain balance program where they balance right and left hemi....i would say it corrected his adhd..(even when i started that program i was questioning them on what they new about pandas...they are also the same group that put ds on taurine...even though his taurine already marked high)... how was your experience...was yours covered by ins....the program we did is considered a school,(so out of pocket 6K) even though their objecttive treats, add/hd, ocd, ts, autism...some have had really great results...but i wonder if it was for those with gut isssues....ds did seem better at end but not healed....i'm starting to wonder if it would be worth it..... exercises 3x a day...aminos, vitamins,2 x's gfdf..going there 3x a week....30 min away....over 3 month period

ok...to continue...ds still screechng maybe not as bad as yesterday...but he knows they upsets me...i tell him to let them out..he is home and can do anything he needs to do here...i still wonder if he surpresses...(or maybe since i didn't give zith or gfs extract and upped prob's its helping!!!) had one consult...will redo vanco and difluc as probably zith caused a problem in the gut...i am trying to be patient and wait another day....WAITING, WAITNG steph was warning me about the aztih...i was trying to be really diligetn with probis....i don't know if had it high enough considering dose of abx and maybe not enough of the right kind but to add some info...ds is reading in the bedroom...taking for ever...everytime i go in he's fiddleing with somethng.. he said he cant' focus....i said, yah its hard there is alot going on(3kids, laundry etc).. i thought for a second...and asked ..is it all the stuff going on, or is it that you just cant focus....he said i just can't focus so i asked...is that just today...he said no.it started yesterday...we had adhd problems in past...things were good in that area lately...and exceptional so far this school year...

I can't handle it either..

i don't know if i like this new set up...i am constantly erasing..deletely..posting when not ready wanted... anyway.... Giardia lamblia ARRRGGHHHH...again...!!!!! phenlephrine...that's bad right??? is that what is in singulairee???

I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction. i will say again..mho...allergies can raise camK....as per my ds...i don't think he had infection at second draw...height of allergy season.... unless...we just finished 30 days of biaxin for myco p..and 14 days of aug..and a burst 40 dayps prior.... could it be herx from treating myco p creating rise in camK?????

OK...back to me...lets focus people... can only be a little funny right now because ds hasn't walked in the door yet.. waiting on 2 phone consults again... in meantime... some labs i just got back form 8/19/10 urea/bun bun/creatin...high...this kids has NEVER had a normal ratio.. but down 2 points from last draw... myco p...went up????? from 1.60 to 1.79?????? is it just not that acurate of a test and a .19 move is not significant.... he was only on weekly abx at 1.60 draw...on daily at 1.79 draw 250mg zith...for 22 days...we have been on 500 last 11 days... he seemed to be continuining in positive trend, with bumps, till yesterday..almost to devistating to be a bump.. does myco p hide like chicken pox, or lymes??????? i know its been asked before, but didn't read thread...why would it go up? 1 st draw of s. pneumonaie. failed 20 of 23.. this draw faied 13 of 14 in my heart..i going with myco p hiding. and/or..clostridia from zith...and never remitting always there allergies talk amongst yourselves and then reply...PLEASE!!!!

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons.... could be herxing if myco p or other infection(lymes, other) pleeaseee....watch the yeast..from one tic mom to another.... and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper.. (we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone.. what do you do for the yeast? And how would I know it was the problem and not die off from some other bacteria? Our doc gave curcumin but I read most use nystatin or diflucan. What do you mean by taper? Do you mean slowly cut down on the abx? I was told we could just stop. Our doc said if it is die off then it could last 2-3 weeks - does that even if you do not treat it it will go away? I am afraid I may not recognize it as yeast then not go at it the right way. ds has to be on diflucan when on aug..and a steroid or vancomyicin....he has been on too many abx through out his life where i wonder if that is our current problem along with allergie.... ds has been on azith now for 5 weeks or so..and maybe have clostridia now.... a taper is prednisone tapered down each week in dosage over the cours of 4 weeks.... it is very hard to seperate all the stuff and how your child reacts vs mine....there are some patterns that cross boards on reactions/healing...but a pattern does not mean that your child may not be different...different reaction to abx/infection/presentation/healing....it is very hard....

i don't know...but I AGREE!!!! or like other post SOT!!! Reality..more than the illnesses listed above or correlation of perfect storm for some, where 2 or mor come together as final trigger???idk i will add as the wild card...maybe we are amiss in not thinking parasites -other, too

not trying to add fuel to the fire...we do need point, counter point... but why can't lymes be pandas/pitands... people didn't realize celiacs could cause seizures till recently.... just read on ts board today another mom who healed her son of ts from gf diet as some celiacs history in family.. the things these kids express are a reaction to something not right in their body...finding causation is key... so did the kid on the ts board have ts or celiacs..one is the cause the other the effect... the effect is what we are trying to heal...and maybe the name we give it...or should it be vise versa...

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons.... could be herxing if myco p or other infection(lymes, other) pleeaseee....watch the yeast..from one tic mom to another.... and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper.. (we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone..

i heard of d-hist last year...will probably get that too..... anyone use pepcid A/C ..is there something in it that is good for allergies...or is it that it's addressing the gut and gut issues can increase allergy issues...

THis is our 5th week of school...but maybe because of 3 day weekend it added stress.. i have some things hopefully coming from iherb i hope by friday/// i may have to go the herb store...cant wait... ds woke up ok..a couple of small vocals...then in car did a cough/rasberry/screech combo...... was readind about grapefruit seed extract GSE..it says its good for candida, yeast then i read this http://answers.yahoo.com/question/index?qid=20080709144424AAjHILp and this http://www.fungusfocus.com/html/grapefruit_seed_extract_info.htm which lead me to Giardia lamblia resides in lower intestinal tract... can be passed on by dogs as well as other stuff..we had 2 for 10 years...first 8 years of ds life... as it is as a flagellated parasite...maybe that is band 41 on lymes test???? http://en.wikipedia.org/wiki/Giardia_lamblia

Grace...I am praying!!!!!!! And may God shed his light upon you!!!

Hi Holly-- Well, tooth loss and subsequent Pandas episodes were one of those, "OH, yes!" situations for us--when we read it on this forum for the first time... Truly, if we had not lived through Pandas we would have difficulty believing it... SO much of what we have experienced (tooth loss episodes, spitting/saliva, urinary issues, writing issues, blank stare, dilated pupils, OCD that manifests in similar ways including step-stepping, bathroom issues, etc.) SO much of what we have experienced has been seen by other PANDAS parents, and yes, I am sorry to say tooth loss triggered episodes. The thought is that the blood-brain barrier is breached (?) (Buster would know better then I--) but that is my understanding. For what it is worth-- YES, and our younger daughter lost 4 teeth this summer, oh joy! Yes..will cause symptoms... question...could it be in part the surge in hormones or what ever is needed to push the tooth forward as well?