Fixit

That is a great write up on all "the greats"....wish doc k stayed in.. I particularlly like cunningham and triffielttit.....as theirs seemed to be more open,(dental, microbes, autobodies, parasites, viruses) not just focusing on strep

We didn't do the cunningham- we were sure with his dnase titers and past history that he did have pandas. I'm sure there are other reason why parents get it done also, but I wasn't that familiar with the ins and outs of the numbers yet. I struggled with feeling so lost in the whole process and pulled in so many different directions until one day it just clicked for me, this is whats wrong -this is what we need to do and everything else has just sorta fallen into place after that. cool....someone said something like.....it's like looking for hay in a hay stack...if i got that right!!!

[ I am very happy for you...i want all the good news to keep coming... I do have a question though....do you think it is a 2 step process...now that you've had ivig..??? i noticed you did pex about 2 months ago had success and then relapse....so maybe we need to count the pex as dose 1 or 1 treatment and ivig as the second dose or 2nd treatment...and maybe realisticlyl not set ourselves up for hopelessness and go in realizng we probably need 2 to make it stick... not my origianl idea, i think i it was laurenjmom.and/or sfmom....but it seems more and more to be a common protocal for success what do you think alex???

you sure are lucky,,,,and luckily you are persistant..... God Bless though my ds does not have anorexia...all the stories add up...give ideas where to go next etc... and unfortunely...any of these conditons,( though a person may be more prone to one more than another)...can spring up or overlap So thank you for taking the time to jump in and post your good news!!!! and please maybe give one more shot at talking with someone else at the hospital!!!!!

that is great doc k said halt and lets regroup ...for you, your child and your wallet.. what are you using to treat the lymes and how long do you think you'll be doing that (what was recommended) and are you going straigt to ivig from there...

Hey SF... you home school right?? i believe you've said you split the clay into 3 doses during the day? when do you give your other stuff... even with homeschooloing..it's got to be hard to do, as from what i understand you don't want to give anything an hour or 2 , before or after the clay... or do i have it all wrong...

i would agree with lyme mom.... on any test where you get a positive i would follow up... its like the pregnancy tests you can get false negatives..maybe not producing enough hormone yet for the test.. but if its positive!!!!!! you can't be a little pregnant...the hormones are there

Hi Melanie,, It is good to find someone you trust. It is hard to go it alone. It is good to work with someone you like enough, as they are taking care of your child. I do hope that there is always an open mind...i think doc k and t have said they are always learning....and there is always that first person who doens't fit the mold and opens new doors..maybe its your child or mine...boy would i like to fit the mold though.....and with this condtion JIMHO i don't think there is a mold, maybe more so than with any other condition. It is good to have a different opionion too as it may make us look at things in different ways. It is AWESOME your kid is getting better!! i guess that leads me to...what is meant by he is pandas like or he doesn't have classic pandas? Again, to me, its all pits and pands with a rainbow of colors in the spectrum or maybe just a shade of one.

i will check it out I know no ill will is intended...but the tics are terrible here....at onset he couldn't walk and we had to carry him the first week...they have morphed and changed and combined... The screech he just let out a second ago would kill someone with a hearing aid...when i was talking with my sister the other day...i told her ds was in the basement around the corner...she coldn't believe it....she said it sounds like a bird in the house.....up close it's terrible....YOU DON"T WANT THE TICS!!!! just like the ocd...you don't know what will happen in the next 5 minutes

i read something about it somewhere...could have been here... are you using it the son that had ivig or the younger boy?

I hear ya sister!!!.....Maybe it's just exhaustion...stick a fork in me...i'm done.....i want someone else to be in charge!!!

I was looking for all the above.... Peg...thanks for that link...brain balnce people treat alot of autistc and adhd kids dc and sf..thanks...i agree too...but as some may know...you start doubting yourself wornout...i did not know about steroids...he did do a burst about a month prior.... not that it matters then, but what would bring the cam down if not abx( i mean besides ivig, or taurine or do they) if people are seeing results with abx...i would think it would some how interfer,scramble,delete, what ever the cam results...

so it took 5-6 weeks for the motor tics to go away....and after the second ivig there are still some lingering vocals.??? how bad or not bad are they? and how long has it been since your second ivig?? Thanks Melane i may have asked before but i can't keep it all straigth

I hope someone has thoughts, knowledge or guidance on this… Ds’ blood draw was November 8, 2009 for the camk and it came in at 105 Can someone tell me what the bottom read was on a ‘diagnosed” pandas case….was it 103??? I am going to roughly guess that that was 1-2 weeks(maybe) that I stopped giving him Amino acids prescribed by brain balance per their instructions based on his urine and blood samples….In the aminos they added taurine. On the blood and urine samples they took from him 6/24/09 his taurine was already marked high/out of range..yet they gave him more taurine???? He took the vtiminas and aminos for 3 months or more starting roughly 7/27/09. that would put us at least to 10/27/09. I mentioned to the administrator that perhaps the aminos stimulated him a bit… Anyway….why would ds taurine be so high naturally to start with…. Could it be his body was trying to fight (what ever triggers)the camk naturally on its own? If he is producing such a high amount of taurine on his own does that effect the camk? I wouldn’t think the taurine would be out of his system by 1 week after taking it for 3 months…. I went to see Scott Smith last week in fl…Very Nice guy. And it was good to talk to someone who didn’t think I am crazy. I was also nice to talk to someone who could fill the gaps of what I understand and what I don’t understand and guide me further… So, last Monday we drew for another camk test…. I have concerns again, in getting a bad reading. Ds was on biaxin from 2/25-4/5 during that time, in conjunction, he also had amox xr 875 x2 for 10 days and a 5 day zpack. Ds new blood draw was 4/19/10 for the cunninham. So it was only 2 weeks between stopping abx and blood draw. I can’t say he was in exaxperation as he could barely stay awake because of his allergies. Also, he may not be as bad as before we started with the abx in feb…… I could also not know what I’m talking about as I am so confused…..and not sure of what I am or am not seeing anymore!!!!! Will the abx effect the cam results? Is the cam the deciding factor for pandas?!

This is good to hear....thank you for sharing the info you have!!!

I know someone whose dd suffered for 12 years with this and with proper antibiotics she's doing very well now. It's not too late but there isn't a test to prove she has it, that I know of. (someone can tell you more about the Cunningham tests) It's sort of a set of symptoms that makes it likely or not. Some kids respond positively with Advil which reduces inflamation of the basal ganglia. Sometimes doctors will do a steroid burst and if they respond, it is more likely PANDAS. If it is PANDAS many kids do well on antibiotics. (only certain ones though) Keep reading this site. Lots of info to glean. I'm in the middle of this myself. good luck. Angela how interesting...the child with the lower score had worse symptoms.... also interesting are the combinations you tried,,,,the results .....and where you are now.... i guess the messagage is just keep trying!!!!!!

i wish you well and luck...i don't know how you will handle that coaster on your own, but you will, you are very knowledgeable and that will help you. i hope it goes easier than imaginable on the little guy...maybe he'll just handle it better than can be expected...my ds is the best patient any doc has seen!!!! how did you contract malaria? and do yo know when? and what do mean by chronic? i've mentioned before my dh grandfather had malaria in the war and had a psychotic episode and i think things trickled down from there

This is perplexing...in that i thought tics were from too much dopamine...my son can out run any kid and has more endurance, even though he tells me he is always tired, but cant fall asleep or stay asleep.... i went to a naet type doc and he said ds test low for dopamine...i was puzzled....but as i read ds labs... it does indicate that his dopamine low i saw scott smitth on monday and he says thats what his labs indicate too...or maybe something is blocking the dopamine or its uptake(i think that's what he said) the labs also showed he produces a lot of taurine (and from what i understand on the ts side, taurine is usually a benefit)...but the aminos prescibed by Brain Balance added MORE taurine???? and i always thought ds seemed more intense when we started the aminos.... And again if camk is reduced by taurine and my boy is overproducing it natrually....it makes me question his cam score of 105...if his body wasn't doing that naturally, would his cam be higher...is it producing more trying to fight the cam.....and what about the fact we added more taurine for 3 months prior to blood draw?? But his dopamine on the cam was on the high/higher side Does taurine effect dopamine or vise versa....I believe scot said that something , in ds is disregulated in the middle...for uptake or conversion... Is that what you are saying??? i don't think i know what i'm saying...i think I just fried the last brain cell i had left The research by Kirvan and Cunninham is indicating that it isn't too much or too little dopamine, but rather that the antibodies interfere with dopamine receptors preventing the regulation of signal. The analogy I use is that PANDAS antibodies are like loud commercials on a television that cause you to go over and turn down the volume and then when your regular show comes on you have to go back and turn back up the volume. This inability to control the "volume" because of the interference of the antibodies is what is causing the signalling issues/cross-talk. So it isn't the dopamine per se but rather that the antibodies are binding to the dopamine receptors and interferring that's causing the issue for PANDAS kids -- at least that's the theory.

Sorry your child is in such need...but as good parents you buster do what you need to do.... thank you for not shying away from the reality and posting not only good stuff but the not good stuff..it helps all who stumble and need to pick themselves up!!!!

Also if you can get ahold of momto2pandas and michealtampa..they are both adult pandas...if i am correct...mom2-2 has her's under control (and i think she is very busy with work and 2 kids )and mt...just kinda of got his diagnosis at the age of 42 i think....i believe he is in the throws of trying to get himself healthy and decided to step away for a while...but maybe if you reach out...maybe he checks in now and then...and can give you some directions.......other than abx....mt tries to go the natural route!!!!!! God Bless!!!

Hi SF....i wanted to say thanks for repeating thiis...as when dc mom repeated something...because for me,,,,,it takes reading, rereading and so on to get it and then look into it,...then forget what i was doing and go back.... anyway.....it may be coinsodnece, but it seems that things are a little better about 1/2 hour after the benonite......not as intense.... ours only says give 1 time a day and its' 1 tablspoon...so i give it after school

do you recall where you saw this?

just out of curiousity...how many naet visits did it take and how soon after did you see results and how long from tirme of treatment till it was completely gone? thanks caryn on info about honey!!!!

JMHO...just like i posted at doc t s site I think its all pand/ppit and pit/pan is the umbrella or spectrum...and all the conditons follow different ribs or coombos there of...and may only follow the rib part way..... now add in lymes (hard to find) or conditons like cronees or celiacs...makes it very difficult to point to..."oh its this"...becasue there are so many triggers...and thats why docs don't acknowledge it, because with these condtions...i would guess more than any other.....no 2 patients are the same...or have the same exact trigger....though infections(which one)...seem to be the main trigger... JMHO I wonder if crones or celiacs can be triggered by an infection???