Fixit

Hey MOm....i tried to read and am really interessted in the 3 rd link... can't read it as it wants cookies....do you see it anywhere else///.....can you summerize in the meantime..or is it too much..

I was just visiting Dr t's site and he was discussing pex vs ivig..... and he mentioned pex in a positive light...... so if i can ask again why you chose ivig over pex the second time if pex worked so well the first time...

I'll be praying for fantastic results for you!!!!!! Keep us posted...maybe like sammy he just needs a little boost...

Thanks

mom...why a year or 2 from now.....too young...or want to see if ivig works first ...how old is your child now?

how long into starting this did you see things sprial...? how long after you stopped did it take things to go back to baseline?

HOw is your boy doing now?? did the twitching stop... how many weeks post ivig are you?? do you have a next step in the works or just holding tight? i 'm sorry if this is a repeat....why did doc L want to do pex as opposted to other.... why did you pursue ivig as opposed to another pex... thank you!!

so the problem becomes....the first 1 or 2 times ds had strep i didn't treat immediatley, since i'd never had it and just though he had a sore throat, or feaver, or vomiting........then once i realized i shouldn't mess with sore throat on him...as soon as he said ..."mom my thro"".......we were in the car peeling out of the driveway.......so i did both

can there be turning back the pages on just abx?? did sammy have turning back of pages??? another question on sammy...does anyone know how long it took, once they started abx for sammy's mom to notice things were getting better?? 10days, 3weeks, a month.....and was it the ocd first or the tics... and was is just a softening at first or less in number/// i read it but returned it to library

He thinks faster than most people and hassome impulse control issues but is not ADHD. We did the biofeedback to retrain his brain- I think it worked well- we stopped b/c insurance was not covering and it was pricey. They can also identify all sorts of medical conditions through brain activity. MY ds loved it- he got to control video games with his mind- he had to get his brain waves to a certain place to make it move. They would change the target setting depending upon what they were working on. somone i know has been strongly suggesting wilddivien....... you say the kids enjoy it.....but does it have any benefit????? is that bio or neruo feedback??

jmho.....i believe natural remedies can work.... but i also think you need to know which one, which works for your kid, which one works for which illness/condtion, did you start the protocal soon enough as i'm sure it would take longer like if your initial thing was strep, but now it's lymes,,,,,and the condtion manitfested in rages, or a comgination of compultions and rashes...... there are just so many variables... i think knowing your own history, writing it down so our kids can know... for instance most of my family tylenol gives us an upset stomach and sleeplessnes i also think eating as cleen as possible, and adding the natural antiffammitoreis where ever possible is key, and can't hurt....

yup.... maybe it's sawtooth.....maybe it's just different stuff working out of his system hang in there!!!

Talk about what???

yes he said singulair...i asked if he was sure about that...i heard some not great stuff about it.....he said that what he meant.. we have slowed our protocal...and don't know if we'll get that far..... we have been dairy free again since feb..... as far as your allergist......i think every allergist realizes milk is a histamine and or an inflammaorty of some sort....even when i was a kid and would get a cold my mom wouldn't let me have milk or ice cream..and tha'ts almost a hundred years ago.... i never got to email scott....i'm trying to ride it out..there should be a hot line somewhere just for this sh(*&^(%..... it just changes and pops up so quick you don't know up from down and when you are in it, it's hard see it from a good perspective...you need an outsider....

i found it ....suzan seems to have coverage!!!!!! that's awesome if that's the whole story http://www.latitudes.org/forums/index.php?...art=#entry64922

didn't someone just today say that united health is covering pandas and ivig for it..... I don't think there is a diagnostic code for PANDAS (for insurance). So physicians who dx PANDAS code it under different dx codes- like autoimmune encephalitis. I seem to remember a Buster thread, that suggested different codes PANDAS would fall under. Let me see if I can find it.

the thing that is hard is the wondering...but it goes back to you are the mom....you know her better than ANYONE ever will,,,,and though suttle the changes are coming....it is hard to be patient..... i think dcmom said it took a month of biain to changes start. i used to get a slight resopnse at first and then a drop 10-14 days later and then remission in 4 weeks......those were the good old days!!!!!! i am trying to let myself know,,,my son is 10, not 5 or 7 and his body has changed, his conditoin has changed....and he's never had it for so long....and as many have said what worked before, may or may not work now or work differently...... can i get an amen on that.....cause i can't believe i can say that here and try to reaffirm to myself.... and yest some of the things become a habbit you have to break

who has diagnonis "pandas" and who gave it someone said united health care is covering pandas diagnonis...... as far as i now there is no formal acknowlegement... i've spoken with Docs t and k and scott smith...has something changed recently????? are your docs just calling it pandas and you're just following the next logical step...

well...prior to this last onset a year ago...ds would ALWAYS completely remit with just abx..... my ds is 10, last onset was at 9 so yes they can work... how do you get a diagnsis of pandas???? i just asked my the guy i'm seeing and he says there is no such"diagnosis" yet...though he treats for pandas, as his kids have it....

Oh man.....i wish we could storm these places together like normandy.... Let it out....and then GO-Gettim!!!!

wornout...just to let you know, i'm here for you...i'm just crying on another thread i started

Amen to both of you!!!! Do you think i want to do this!?!?!?! At least i have a chance of "curing my kid" with everyone out here....with other docs, they'll admit ....oh we dont know what causes it....so then, lets at least follow my lead as a parent and what i've obsevered.... this would have been resolved a decade ago with doc swedo..... but apparently the better suggestion is to drug him over and sacrifice him in order the rest of us can go on our merry way....and that wouldn't necessarilly be the case anwawy...as so many ened up on 7 drugs and go off of them in the end....just as bad as when they started...

We pretty much stopped everything as per doc t about the end of march to run more labs mid april...doc t is busy so i was able to get ahold of scott smith, went to see hime and ran more labs 4/19/10....continuesd doing nothing till all samples were sent, start program 4/23/10... we got amox tr,,,isn't that generic for aug xr...sorry....should i get the augmenti tr???? i tried quescent on day 5, but we also had upswing in ds condition, so i stopped till i spoke with scott which was next day...he said wait on adding anything else, as per upswing, the urinatina issue, and now i look back there was an increase in pollen....he wanted to wait to let ds adjust to meds so liver and kidney can adjust and that seems to have adjusted....thngs settled alot by next day and day 7 was looked like my dreams were coming true.. let me ask...as i'm writng this...i think of all the other parents and i say ...you got it ,keep going...........but i don't see that for me.....is it all my imagination...and like wornout and jayjay...will ivig work....i'm guessing i don't have a choice but to try.... anyway..we are not on any allergy meds or herbs.....the pecid thing is on my program but havent' gotten there yet.....i guess i should email scott again.... i told him nasonex seemed to ramp up his tics(as per getting back on plane to go home, son was in tears, and he doesn't cry easy and has high pain threshhold) scott put down singulare....from this board....i haven't heard great reports about it.....so i'm more scared another reason allergie keep popping back...we a had 2 dogs...once they went to heaven...we went 5 months before this last episode...less things keeping his body aggrivated....(only lab that came back is ds is still highly allergic to CATS, see buster!!!!) did get the paper work, scott just mentioned the one...we'll go over everything at one time.. how does pecide ac work...i don't get it>>>> and i almost want to do ivig just for the allergy relief if that is a true benefit....ds was almost asleep in scotts office his allergies are so bad....has to sleep sitting up to breath... i am scared to use anything for ds allergies as i think he gets so beaten by them, and maybe the meds only mask the symptoms, but let it into his brain....i am scared TO DO ANYTHING.....if i upset the apple cart will it be better or worse???? Ds is someone who would really benefist from allergy shots....but i don't think i'll ever give him another of any kind,,, and will have to get an examption for the one for requred by GA(is it the same in other states) for versella(he failed, only a 7, what ever that means on his serum test).. i wish i could talk with someone who's done the sublinguals(not the homeopathic kind)the kind they use in europe i asked scott about myco p and adding, but he thought i would be gone since we were on abx for that for a month......but can't it be chronic like strep...or lymes...at least that is what i keep saying....... i had a second myco run about 2 weeks after start of abx but with quest, as i am fully covered on labs with them...the igg with lab corp showed pos anything above 320 ds was 631....quest was above 1.10 and ds came back at 1.60....scott said that it was coming down.....does anyone know how to compare the 2.....i ran the second to have a baseline going forward with quest...... i guess i could retest in future...but if i fight one thing now...and myco shows up again....we're just in a big circle.... just noticed...this lab shows an igm...316......but under 770 is neg????? on labcorp's there wasn't an igm reading ..or they just don't print it if neg????? So as per buster thoughts....the exercising could have opened things up.....so maybe slow and steady wins the race and let things resettle let the abx do their thing.... Thanks to all letting me know they are going through the same thing....it makes me feel better....i think

Ds has started his new regime….of amox xr and fluconazole.8 days ago…the good news is …no sign of pain or rash as before…. Day 5..teacher emailed me,said vocals up is there anything I can do for him…went to school with clay…she emailed and said it wasn’t better 45 minutes later….I was very upset…..no screeches at school, he holds it and does a lot of throat clearing (ps the screech might be likened to what doc t calla falsetto pitch in his write up) (his screeches are down a little over the last week or so…(because he was so congested and couldn’t get enough air to make the squeal, or because pollen count is coming down)) Anyway he gets home…and I don’t think its bad at all…..i don’t think she gets or sees what I get… I begin to wonder/hope if it will work…day 6 was kind of turning point last time(but were also on biaxin…so maybe it was the combo?) He ends up having an accident in the middle of night and tells me the last 2 days,, when he has to go, it’s always like an emgency and can’t get there fast enough Day 6,… better day overall than yesterday…pollen count down to 95….out of the the 3-5 THOUSAND range we were in a couple of weeks ago… Day 7…OK…things look good right of the get go… pollen 84…no reports from school….comes home,motors down..squeels maybe every ½ hour, almost like he forgot to do it…maybe 15-25%even 35%ish better than we were ,so very happy, looks like we are on our way…i can breathe .go to 7pm soccer game....on way home lets out a couple squeals Takes shower and doing homework…squeeling every 5 minutes….squeeling as he’s falling asleep….. Today day 8…squeeling this morning, motors are up….pollen 93 IT is just so correlated to him being home inside for several days..…..go out play in grass for an hour and bam..up tic on everything,compulsions….noticed last night he licked something… I noticed the lick a week ago, one day…I don’t call that a tic…that would be a compulsion or an ocd…..if he is in constant motion…even when sitting down….is that chorea...he's skin picking, hair pulling some?? Last year onset 4/6/09 worst pollen count day of the year…..is it all just allergies for ds… Is this where we are saying that once the toll receptor gets changed or triggered by his past streps that anything can retrigger his symptoms...He did come up HIGH on myco p igg.. Do I even know what I am seeing anymore? Is it all in my head? You know….you just keep hearing docs tell you is all a coincidence…a friend or 2 say just do what the docs “traditional”tell you to do and stop doing this to your kid and yourself if the docs call it ts its ts….why are you fighting??? My gut feels like doing that would be wrong, especially with EVERY other episode completely remitting with abx……..but I am so confused, I am so tired of this…things look so good and then the smack down…… Is this why doc k says that treating with abx doesn’t work…Maybe ds has had too many reinfections……and ivig resets the receptors? Very important to me is...does ivig really help with allergies, because every year spring sets off an episode...or at least it weakens him to get something else in combinatoin.... maybe its doc t’s analogie..its like an asthma attack and need help to settle down…but the abx maybe not do it, or are they and I haven’t given it long enough,,,could this be saw tooth pattern or is it things were getting better and the exposure was the pollen(I wish it were food, that you can control…he’s got to go outside even its to get in the care) and acts like it would be a reexposure to strep…. Am I expecting too much…..I need it to be 2 years from when this is behind us or its more widely accepted and we have more knowledge……