Fixit

Thanks for the reply...i think Kimbolt said the same thing on another thread.... so that makes me feel better... now i have to get some papers to shoot back at ins... On a same note....i did notice that it was only 1mg/kg... aaannndddd, being that i follow those that tic a little closer...it seems that at minimum,,2 ivigs are needed, for most ticcers....(if you cant' get pex)

ds has had all 4 prevar shots...and 8-12 strep infections...... did they cover it first go round or did you have to appeal....

here's the reseach by hoekstra http://cat.inist.fr/?aModele=afficheN&cpsidt=15720600 so...it says almost as an unexpected side effect it helped with ocd.....not tics....... this is one of the papers the ins used in denying ivig......

THANK YOU..... i am sitting here ...tears running down my face...... i needed to hear that from someone who KNOWs pandas...... so...how bad were your boys motors...50% of his symptoms????? and even though he still has vocals....they are like a tide going down, with waves??? I REALLY NEEDED TO hear this too!!!!!!!!! Just needing to reaffirm what i know...especially withe that paper by hoakstra......( so maybe they didn't know that 2 ivig are needed for tics!!!!!)

here's the reseach by hoekstra http://cat.inist.fr/?aModele=afficheN&cpsidt=15720600 so...it says almost as an unexpected side effect it helped with ocd.....not tics....... Buster, peg, kim...any thoughts on this.....

Debbie ..thanks for the reply.... pneumoccocal titers are the same as streptococcus pneumoniae....right..... out of 23 serotypes..9 were nonexistant... 11 were well below 2 and he only passed 3.... i don't know if scotts office put that into the request????? i will email asap.... can i ask ...how old is your dd are you saying the tics are 60% better too!!!!!??????!!!!!! or that's the main thing that is better......so exciting!!! what abx and what dose are you useing.../// and ...what doc are you doing this with....... thank you sooooooooooooo muucchh..... i am so tired of fighting with docs and now to fight with ins.... and i just feel like,,,,if we are going to go bankrupt...i might as well do pex 20k and then ivig 10k ....as opposed to a minimal of 2 ivigs to 3.......were talking 30k either way. right??? ds is 80 lbs. and i am so mad at myself...the last 2 weeks i've dont nothing....just tried to be happy he wasn't at his worst and be happy for the kids.. .i should have been calling more pediatricians, immunologits, and ent's.... now its friday....called docs b's office..out.. emailed doc k this moring...i know he's away..and this was before i got rejection notice.... it doesn't pay to take your eye off the ball for one minute!!!!!!!!!!!!!!!!!!!

can i ask....do you have a percentage of progress...25% better etc... i just want to hear some good stuff.. ds' wrist /pull is so hard you can hear it snap... his head nod is so hard it gives him head aches.... and though the screech is gone(per vancomycyin)(2 times it came, 2 times it left on day 12 of a 14 day dose)...he now has a popcorn sound..and a sneeze, like Lauren....many times a minute... and as per my recent post, just got turned down by ins for ivig....

just received denial from ins for ivig....per Shulman ST Singer Moretti Murphy Hoekstra (lack of effect of intravenous immunoglobulins on tics) Perlmutter,Leitman,Garvey..... the only thing i see, is the hoekstra thing....and its effects on tics....which is 90-95% of my DS condition...... So...... if i'm going to have to dish out $$$$$$$$$$$$$$....should i go for pex or phersis first...... to all those who tic.... to all those who have done pex/pheris......... I JUST WANT TO CRY......I was hanging on well enough... I wasn't expecting approval....and all along i really wanted the other 2.......but to actually get the denial letter....... i was hoping to follow up with a possible ivig under insurance..... Does doc k ever order pex or phereis....he did mention it to me the 1st and only phone conversation we've had.... i have an appointment with Doc L in a month..........if she orders pex...do insurance co just say yes because its' her or has anyone been denied anyway.. ......how long from time of visit to actually getting pex.....2 weeks, a month??? for those who tic as main presentation...if you did ivig....do you think 2 is the magic number and not wait 6 months,,,but kind of back to back,....say 8 weeks apart..... WHY WONT THEY OPEN THEIR EYES!!!!!!!!

So the side note should be per the couple of threads... NO Dairy(calcium), No Mag, No probiotics, NO Bentonite clay......2 hours before or after abx.....is that the list???

absolutley....... thanks for posting this......so i wonder if you could figure out the right probiotic, if that would help in keeping the bacteria the it feeds on at bay.. and it wold in essence do the same thing as an abx would.. just to repost...here is the artilce that talks about bacteria and weight gain.... it seems more and more there is evidence of the gut and so many secondary issues.... now if they could just be so open to infections and secondary issues http://www.time.com/time/health/article/0,...1969807,00.html

Thanks for posting.... can i ask...were you on pred going before you went into ivig...or just the days of treatment ie ....as opposed to waiting for symptoms...she was given these ahead of time....or a couple of days before....

I am so happy the gains are coming.... i want to reach out and hug you..... i will keep praying for your daughts healing......

Yes....can you stop now....

OH SO HAPPY for you.... i know tude, behavior have been big issues for you....... isn't it nice not to fight...or walk on eggshells(every minute).(again ours are just moments of such things...not hours(just 1 or 2 times)) sorry...i know you've mentioned this....but its hard to keep my own story straight..... other than a high cam k.....did your ds currently have other high numbers....did you say myco p..... how did you come to decide azith......

i have not been through this yet...and should the time come...i hope others will pray for me and my ds..i am tearing just hearing your agony... know that i empathize and am praying for you... And look forward to hearing all of the good news that will be coming from you and others on this thread that recently did ivig...

besides trying another abx.... if you have lyme...that takes longer than a month of abx..... you may need years and also iv abx....i am not the expert or have to deal with it.... also myco p.....for some it goes away with a round of abx...there have been papers where it takes 6 months of abx and ivig and her strep might still be high..... AND IF you get all that cleared up...it might turn out that her system was sent into overdrive with no brakes and the system will need to be artifically stopped,,,possiblely with ivig or pex oh and if that's not enough...now that you are on abx.... we have found we now have a great deal of problems in the gut...with bacteria, yeast and fungus...the digestive system truely plays into this..... So you still have a lot...IMHO to work with, through(assuming you don't aslo have food allergies and other things)

I like the way you summed that up.......From you mouth to God's ears....that there are panda/pit docs and we can just get refered to as specialists..... Until then, i have yet to meet 1 panda doc other than those listed on this board.... everyone i have met has been to good/to smart/to above acknowledging pand/pits So just like Phasmid...i take my kids to docs who politely dismiss me....

i am not a doctor...but i would agree that is does fluctuate....but there is also a norm as my son's first score was 105, but that is still not normal...and it was concerning to m,e as it was just one test that may or maynot be the end all be all to my son being considered pandas...... as it wasn't crazy enough...but why wasn't it normal??? and I KNOW ..full well then, but was starting to second guess myself, upon everyone and some docs relying so heavily on that score.... i was actually scheduled to see latiemer at that point(november 09), but was concerned she would think the score wasn't high enough...(wish i had gone anyway as things had gotten worse, but would i have gotten sluffed aside) .but doc k said it didn't matter..more concerning was his prior history, current onset and condition.... and as my son has worsened..so has his cam.....so i think it should be considered a indicator, marker, for some immune problem(could have multiple triggers).... and with that said.....if it is above normal...which is 93ish.....that means SOMETHING is going on....and on that level should not be dismissed So to me.....the score doesnt' matter...and i hope the docs look at other things also...but i guess we need something to get insurance to put up the $$$$$$$$$$$$$$$$$$$$$$$$$$ stinken insurance co's!!!!!!!!!!!!

on the tail of your good news...can i ask.... how old is your boy.... and if i may ask from worst point to now...how much better is he overall... do you only have about 15 % to go??? i am so happy for you..... but if i can add caution....for my ds i haven't had a positve strep in about 2 1/2- 3 years...thought pressented with some illness (not strep, he did recover fully on abx)...so maybe he's outgrown strep i think this almost 1 1/2 year ago onset was from myco p...which set off a some sort of hyper /overdrive senerio.... just be cautious of other types of infection... i'm not trying to be a downer.....i hope for some miracle(which is alsways possible) to happen so i will not need one of the big guns.....I'm ready any time for that to happen!!!

Taurine also effects Camk ...not sure if it effects just the reading or if its actully doing something to effect the whole system, which in turn knocks dwont cam level

Tpotter... on an earlier thread, when you said are you saying that you were able to control these symptoms post ivig or pex? ....or for some reason they just went away? ....or with just abx they went away?(until onset a year ago my ds went away also with just abx, he is now 10) AND LLM when you posted this...it makes so much sense, thank you....as this is what my ds system points to and we have tics as main presentation will other docs start prescribing pex...i feel like a pex/ivig combo is my real answer

Thanks for posting this.....i like it as it seems like an analysis or an opening that there could be other possibilities of many disorders and possibly other infections

Lots of good info coming round!!!

Men and toilets...nothing else needs to be said....

thanks wendy...i will add this to my print out folder!!!