Fixit

its the least i could do..to pass the little i know forward...by eht way it should be cbc also test ebv.... an easy thing to add that should be mininal in any problems...but beneficial in the long term would be to add probiotcs even if you are not on abx..(.now that i know better) and add bentonite clay if you can squeeze it in schedule.....only add one thing at a time and wait 4 days or so to make sure no neg side effects.... there are many on the board who have a better understanding of these things, but i've found them more beneficail than some other supplements...(ithink)...the more i know...digestion is a big player..... I can say that if you can get ahold of scott smith...a pa in a dan office in fl....he is on lynn johnsons site that was mentiioned.....and very knowledgable...at least call him and see if he would suggest a phone consult or a visit....he will need a vistit to do certain things...he also does blood work and ignex and the cunningham in his office....if decieded upon he can also do ivig..... some of the tests he may want to run you may have to go off bentonie and other things..... ps most on the board are used to my fat fingering, no spell checking...sorry..lazy and busy....every second counts...

Wow....its is great that things are slowly progressing...slow and steady wins the race. also kudos to you for finding the fortitude to pull back and be patient!!!!

I'd like to shed some light on the positive. My son is only 2 1/2, diagnosed with PANDAS in January by our plain old family pediatrician. It was the first time we'd ever heard of PANDAS - we hadn't even been searching for an answer outside of "his age" at that point. He diagnosed him based on the abrupt behavioral changes (which he even observed) and an impetigo infection a few months before the outbreak. He did a throat culture - which was negative - but still suspected PANDAS since something like 20% of throat cultures come back negative (esp if the child is a carrier - which he suspects my son may be). He opted to "try" antibiotics to see how he responded - and go from there. Luckily, he responded VERY well and we noticed significant improvement on the abx alone. At this point, we haven't done any blood work on our son, our pediatrician also noted that many of the blood tests ordered for PANDAS also have a high "false" postives/negatives in children as young as my son - so as long as he's responding so well to treatment he doesn't see the need at this point. Our Dr is an older gentleman, and this may sound incredibly age-ist of me, but we were shocked at how much he knew, how much he was also willing to admit he didn't know/was unknown about PANDAS. He's seen and treated several cases, and even his nurse recognized the potential PANDAS dx. For a Dr his age, and at his stage of his career, we are extremely blessed to have one that has stayed so on top of the cutting edge of what's going on. He was the first to admit that diagnosing these things in someone so young is tough (our son has presented with ADHD, OCD and ODD) since all of these things are "developmentally appropriate". And we even had several discussions with him about how to control our son's behavior in the months leading up to our diagnosis - thinking it was just the terrible two's. But ultimately, our son just "wasn't normal." After starting abx in January, we've been on them consistently (with one break last week to see if they were still needed - THEY WERE!) and have almost all of his symptoms under control - with just a little risidual OCD (which is just slightly worse than "normal" for his age) and ADHD (which our Dr says may or may not ultimately be related to the PANDAS). But the ODD, emotional rages, and severe OCD are gone - only rearing their heads for a day or two when exposed to strep. He starts behavior therapy this week to help with the residual OCD and to cope when he "flares up" I wanted to put all of this out there to assure you that there ARE Dr's out there who are paying attention - and the hard work and long roads that many of you have taken before us that are "new" to the club is working! I recognize all of the suffering and struggle many of you must have gone through looking for the dx that fit your children, and eventhough I've been "lucky" to come by an appropriate dx quickly and relatively painlessly (just 4 months from first onset of symptoms) it's mainly because of folks like all of you who have worked so hard to get the word out, and having a Dr who doesn't think that they know everything and is still willing to listen and learn! The word is getting out, and you should all be proud that your efforts have saved at least one family (mine) the pain and heartache of an extended search for an answer. I know I am thankful for all of the insight and knowledge you've all provided not only to me - but to the masses in trying to make our kids voices heard. You are very fortunate...........jealous....

and this http://www.cnn.com/2010/HEALTH/06/01/dirty...dex.html?hpt=C2

Didn't scott include a saline drip ....didn't that do the trick??? also, just checking your ds did a lower dose ivig ...correct??? one more...if you go ivig for your younger guy are you going higher dose???

I thought i would add this since it ties in http://www.cnn.com/2010/HEALTH/05/31/chemi...x.html?hpt=Sbin says essentially the same thing

Hopefully some of the adults who are currently trying to address pandas can help you....there are a few. there should be/or is a list of tests you can get done asap with a regular doc strep aso antidnase a/b mycoplasma pneumoniae igg/igm tsh panel vitamin/mineral levels....d,b,mag,iron cdc panel lymes by igenex and maybe start by removing dairy and gluten to see how it goes..... see if you can get some other food test done there are more and maybe others can add to a first go round list.... and try to get to a PANDAS doc soon!! i have some fires here,,,thing are not great...i'm sure others will jump in

ditto!!! Oh so happy for you!!!

Amen Sister!!!

your wording is good....my concern...and i know i need patience, time(but time is running out)...is as you said, when it changes and the ability of the immune system to self-rebound gets shot.....(again ie...sons prior recovery on abx alone and now we are doing every combo immaginable and small blips at best)...and i guess that's why doc k says abx will not hold/work in long run so i too muddy the waters in, ds does not have strep...unless its in the gut...but i think for ds..it may have been myco p this time, but his sytem can not stop,"self-rebound", its in overdrive with no brakes.... was anything mentioned in regards to other illnesses, infections(pitands) allergies??? or did they not want to muddy the waters further and its presumed that that will follow???

. Does that mean that cord blood might prove benficial in treating PANDAS? i hope so...i've asked this question before.... .i didn't save it for my oldest ds...not sure it was available or well known 10 yeears ago... but i saved it for my other 2... i realized then my 1st boy may benefit from this as we already had 2 episodes of tics and strep and the docs were ney sayers(coincedence, they say!!!)...... and i thought......this blood might be the key....

Definitely keep the appoint... but could be he's forgetting to go to the bathroom before bed, drinking more than usual before bed, antibiotics, other meds, and sometimes its the bladder not growing as fast ...very common in boys to have a period of this around this age... i too worry when ds had 2 accidents this month,,(not normal at all),but i think its all the meds...(at this point) even though we are having a terrible time right now.....

i didn't even have that to start....it was marginal at 105.... but as a mom i've seen too many illnesses then exasperations....and ds was sick the day before this onset... then found this january, myco p igg to be 637...scale ends at 310... so it makes me think that myco p may have been the trigger..now his body is in perminent over drive... cam now 160, but also his urinary neoptrens are scarey high....which is a marker for hiv, autism, ms, lupus...... i wonder if urinary neoptrins should be tested for more pand/pits as a autoimmune marker..... waiting for another round of same labs to come back...i wouldn't doubt that maybe the igg for myco came down... his body is just in overdrive and can't stop....

Thanks for posting this.... ps...i wanted to mention,,,when the comercial comes on aftetr the first segment, there's anohter 10minute segment SImply.....maybe you and monachcat want to forward these links to doc K and swedo........

AMEN SISTER!!

is that true.....that's what i was understanding too...but grasping things is coming slower to me these days... if that is true...it is more confirming of me pursueing ivig... for the first time last spring my ds pulled his hair out .....then i put it together, when i saw him grab a hair after his first day of soccer practice...it's almost seasonal for him or sends him on over drive for during that season.... did you guys see SIMply posted a video that aired in utah with the noble prize winner who did the study!!!. Cans someone splice these 2 threads together

Part of me says..send him on over the other part is concerned about the price of spice in CHina....(not tea) Always something

ALWAYS HOPE...So many stories.....ALOT of trial and error...every person's chemistry is so different

just wanted to make you feel better.. .i don't eat anymore... i am tired of thinking about what to buy .what to cook..will they eat enough...what is the snack...they wont eat this, that.... i wont let them have barely any processed foods..... when i become a miillionaire...i will have a chef who will cook orgainic... i'll still clean the toilets and what not....but for the last six months, one of the few things i say outloud is i am tired of anything relating to food...as the problem is you need to eat all day...so it just goes from one meal to the next.... going to bed....having a glass of wine...not food

May i ask,unless i missed the part where you said it... your son hasn't had any tics in 2 days.... do you have any idea why... supplements...ivig... thanks

exactly....and more so since since they have no clue in the last 50 years what causes it....but its on its way(autoimmune, inflammation)

bronxmom. i feel so bad for your son.... are things worse than before ivig or are they equal to his worst exasperation? have you had yourself checked to see if you may have the igg problem... it would give you the link and maybe you can remember some of the things that may have helped you..... its weird how families like the same things and react similar to substances from food to ointments.......

thanks for the reply...i hear ya.... I AM SO HAPPY..your ds is getting better........Reallyy....

hi melanie... i don't remember..or if you've answered this... your ds is going every 21 days.... is that till x time...ie 18, 21 or just a year.. or is this something that he will need to do a lifetime.... did your doc give you any thoughts on that.....