Fixit

a friend sent this to me...i feel like i may have seen someghing about this guy before...so sorry if it is a duplicate. but it has me pointing to a couple of things... http://www.tacanow.com/medical/comprehensi...iral-autism.htm i wanted to quote this because i now think that this may be the case for strep as well do to my ds benefiitting of aug xr Testing for Viral Therapy You can ask your primary care physician to order a viral titer analysis, which can be completed by any regular laboratory and is often covered by insurance. Many people have run these tests and they can be helpful for some children who do not respond to a trial of this therapy. However, many children who respond well to antiviral therapy have had negative viral test results, meaning they did not appear to have a testable virus. My son was one of them Some people say these children have difficulty creating antibodies to viruses. Some people say the therapy might be affecting a virus that we are not yet aware of. Some people believe that this therapy is doing something other than fighting viruses. The bottom line is that there is a real group of people who respond wonderfully to this therapy that never test positive for a virus before, during, and after the therapy. and one of them is the Coxsackievirus and in this link http://kidshealth.org/parent/infections/ba.../coxsackie.html it says A child with a coxsackievirus infection may simply feel hot but have no other symptoms. ds has been saying this almost every other for a while...i thought maybe related to starting thyroid med...but he may have said this before starting levoxyl

my son was on taurine for about 3 months prior to the cam test also and came in at 105..... i wonder if you are correct...because the augmenten really showed some promise?????

EXACTLY....we don't need another stress study!!!!!!ON ANYTHING....if you have condition, syndrome, rash....stress will make it worse...STudy complete, now give me a couple of mill so i can do some real research....G.D....*%^&(%*()($#*&()($#@%&(!!!!!!!!!!!!!!!!!!!!! I AM SO MAD!!!!!!!!!!! what do we do vickie.....i am overwhelmed here...but i can certainly write my story up and put it somewhere.......

Just happened to check over here....i tried to pm you last night...anyway.. Yah...i don't know.....TODAY....is the worst day EVER....so looking back on anything is good..... I would say it seemed llike it helped with his ADHD sypmtoms.???? or could have been just that he was getting older at that time.... THey do a combo of aminos, vitamins exercises...lights and we concurrently went gfcf for those 3 months...... I will tell you......i long for that time frame......and things were miminal....SO i don't know...he wasn't completely healed...but if i could say at that time things were alot better and people did comment on ds general overall deminor!!!! we re-elimnated milk about a month ago...as per allergy season....and just today...since we can't go outside, we reintroduced some of the exercises.. i am mixed.....they were also very nice and mean well....and i think some have had actual benefits...as i have talked to a few parents.... i wonder if it is like everything else.....what works for one doesn't work for the other.... and the more i KNOW.....the more i realize there must be a thousand variables...and it's like trying to figure out a locker combinatoin... celiacs, dairy, allerageis, chroones,yeast, strep, ebv, tmj,corn, vitamin, d,b,,c, iron, etc,,,aminos,,minerals and all of their independent lists, toxins, mercury, arsenic, parasited, dental work, fillings, food sensitivities, chemical senstivites,, cranial therapy, acupuncture, homeopathy, abxs.. immuglobines naet, lymes...I mean REALLY.... Now ,,,more than likely with these kids you more than likely have a combo...now find the 2, 3 i was aslo thinking of calling them next week ....to ping pong some ideas... if anyone wants to pm me we can talke.....

I just want to add that we are not disagreeing on protocol.... we have a as good and as strong a realatonship as the best.... But lately.....the vocal......just imagine a sirine never shutting off...and you have to watch tv, eat your dinner,etc....and that thing can't even be unplugged.... and since all i do is research this stuff ...the worse he is the more i research...the less time i have for the other kids...the more the other kids need stress me... hubby was unemployed for about 5 months ...we are not earning as much and dipped quite a bit into savings... not much of anything we do is coverd by ins... hubby is stll new ^6 months^ on job...trying to prove himself...he works from home..... he says if you can't let me work...i can't make the money for you to do all the things you want to do with ds.... he's snapping at me....i don't want to talk unless its about what to do next.... i'm tired of thinking what to eat that is safe...there are 5 of us in the household....the kids will be kids when it comes to eating and we eat 5-6 times aday....... WHEN i become a $$$$$$ i'm getting a house cleaner and chef to live hear....I DON'T WANT TO THINK ABOUT, OR CLEAN UP FOOD ANYMORE.. i've lost more weight, that i didn't have to offer..... I want someone to watch my kids for 6 months so i can just focus ITS A BIG CIRCLE J

I sent you a pm with the name of an excellent therapist in the area. For an update with our son. He seems to be doing very well. No vocal tics in at least a week and his neck tics are almost completely gone. He has been taking 2 teaspoons of lauricidin every day. He hates them as they taste like they are wax coated. We tell him not to chew..but he's 6. We are going to get a capsule form of monolauren and pour the powder into drinks/food etc. Today we are also going to start on colloidal silver. Monday we are planning on going for a Strep test just so we know what is going on. Love to hear how things progress momwithocdson..and everybody else for that matter. what is the difference between lauricidin and monolaurin? do you have a name of someone in the alpharetta,(north side of atlanta) area.for CST??

Are you sh&^%&*( me!!!! this wasn't an article on pandas...stress makes every condition worse....it was an opportuinity to bash pandas...... It's like lymes you idiots....YOU CANT ALWAYS FIND IT ..think outside the box... an ointment that works on your rash, may not work on mine or make it worse..... I AM SO P..... AND IT DOESN'T JUST HAVE TO BE STREP!!!!!!! WE NEED TO MAKE PITANDS THE BATTLE CRY!!!!

Thanks for the info...we did gfcf for 3 months is fall..it was ok...we went back to regular diet and i didn't notice any difference( i have always been dye free, no hfcs....and in the last year...no preservatives etc) but my boy has been getting worse since the fall...my theory is the infection of what ever he is dealing with is getting worse...and i didn't know that(someone said) that puberty causes inflamation too!!!! i took him off dairy again, about a month ago to stay ahead of allergy season..... but i have't given allergy meds lately because i think zyetec makes him more hyper...i did buy clear, waltmart brand clairton...i will try that tomorrow. i had to leave because i was at my breaking point...told hubby give 1/2 melatonin...hubby gave whole(luckily i decided to by the 1 mg sublinugal).. that stuff is really something....but tomorrow we will try the 1/2 dose He has been bugging me about going outside all week....it rained yesterday..today was gorgous and ds was at his worst so i let them out after 6.30pm....worst pollen time is moring....had him get in the shower and see what tomorrow brings.. Thanks all...I AM OUT...BANKRUPT.....TOAST....DONE!!!

i bought melatonin today 1 mg sublingual i have a perscripton for cholininde from about 6 ago i could fill... i have an appointment with a dan doc in fl.....scott smith in a week..... he can't do anything till he sees us.... we will be doing alot of lab work.......and an igenex should i start the chlon....or melatonin.....i hoping if he sleeps better(always an issue other tha when on abs was better) that it might help him during the day... **************************************** another topic.....could these vocals be from yeast?????? if so ...would amino acids make them worse...like taurine???? i alos bought bentanite clay......would that help with yeast and/or if we go back on abx, for flora should i just keep giving probiotics....that doesn't add to yeast does it....(i am not sure there is a yeast problem) also on one of the probioitcs i gave when we started the clarith, had step thermo in it.....??? is that ok since its a probiotic...or did i just add to the problem the grunts are like he can't get the air out hard or fast enough.......he's being punched in the gut and then a puppy gets it's tail stepped on in the fight ******************************************* if we end up not being able to go back on aug xr would regular aug be different if neither are ok....what would be the next abx...zith at 500mg..... what would be next after zith

I just want to cry.....things started to backslide about 3 days off of aug...now that we are off everygthing...the screams are terrible and his motors are pretty severe too!!! why can't i just be a regular mom...and wonder if their teeth are staight,,or will they be tall, or he has a lilsp....lets work on that..... you know your regular, everbody has something wrong with them problems..... DC....what were your kids symptoms again........and what % better are they?????..i'm sorry and their ages again and who did you do pex with??? I am so happy and so JEALOUS..... i have never considered myself a jealous person...things don't impress me...... BUT NOTHING CAN BE SO ENVIOUS as having a healthy kid!!!!!!!( iknow you are not a 100% but you are on your way!!!!!!)

Has anyone had vocal before ivig and they went away after?????

THIS is exactly part of what i was fishing for... Worried dad....did the vocals subside.....how long till that develoepd...and how long till it went away Peg...how soon after did you dd start after ivig...and is her's still going My ds started 3 days into biaxin/2nd day pred.....HERXING???? about 40 days ago Today is pretty bad!!!!!!! Pollen count wednesday was about 6000!!! yesterday with some rain was 2000!!! and today is sunny so i expect it is back up to 4000ish note...during winter you get counts of 0-5 summer 7-25 are we all noticing the vocals aroung the same time?? Is this somethng that would have come out right now anyway? ARE other things better...or would be markedly better if it weren't for the screech.....DS has gotten to that high C that makes my ears hurt/tingle/pain i just asked ds and he said it doesn't feel like somthing in there....but if he doesn't do it he might explode,(and then he smiled).... cant really explain things sometimes...he can explain tics usually(feels like somthing) so is that a tic or a compulsion or ocd? on aug xr maybe 20 a day We've only done one low dose IVIG (2 1/2 weeks ago)- my daughter's aggression got slightly worse (it had improved considerably), but she also has developed a high pitched screech that we had not seen, er, I mean heard, before.

it was more of an ..for instance i was talking about what is on youtube on the today show.....if you notice she had something so mild with her eye...... i would say that is probably better than sneezing every 5 seconds...

I like the responses everyone has given so far...... Since i saw a marked improvement on aug xr but had the reaction..then 3-5 days later doc t started the 5 day zpack...500mb with 250 remaing days..... there was backsliding.....do you think that the zith wasn' high and long enough.... a/o today i would say we are back to were we started and maybe a couple of the motor tics may have been switched for the F)(*(*&*&^^^ vocals.. is it possible the vocals are do to yeast overgrowth.......HIGH pitched squeal.....and as of the last couple of days i notice a grunt that sounds like someone lifting weights(short and abbrupt) and kinda pissed sounding......LIke Aurgh!..,,,you son of a......

these are kind of questions i am looking for....Ds has moderate to severe tics...compulstions???...some tridkkl...(hair pullilng) is there a possibilby of exchanging these problems for more ocdish stuff/etc I noticted Lauren on the today show,,,post ivig has a slight eye twitch??? very very mild and better than the perpetual sneezing.... I would take the eye thing in a heart beat for what is going on now.... And with bubbasmom.....it hasn't been 4-6 weeks yet..... so I am hopeing she will report in a couple of weeks that things are better than when she startd

question.... what was the consensous on giving probiaotics that contain STretpococcus thermophhilus ds did/does? react to strep...but is this different... just realized the main one i was/am giving contains that i have 2 others i rotate so we hopefully cover them all..... also what about the bartlets clay????? can you give that and probiotics or is that too much???

Oh thanks!!! i needed that!!!!

So far so good!!!!!...i would like to see this thread drop off the face of the earth maybe rebump it once or twice to make sure. GOOD BYE THREAD!!!

To add my ds is allergic to real cats.....but not all cats...some he can pet(not just the hairless kind) and be fine. A family had outside cats and we were outside and his eyes were almost shut w/i minutes... And i seriously think it might do with color...(ithink)....the lighter colored cats don't seem to bother him as much as the dark colored cats???? (could that pertain as well do different strains of strep that hit certain regions or certain years) on severity

As all of us do...i am planning 3 steps ahead..... we are closer to doing ivig.....does anyone REGRET...doing ivig or the other procedures and why? Postive aspects....helps with allergies...relief in or remiison in ocd/tics... are there more positives i am missing. Did anyone do these procdures...regret it....no postivie outcome....came to the conclusion that it needed to be repeated and then had a positive outcome???

since stopping aug we have been backsliding and things are not so good right now.

THANK YOU ALL!!!! I feel like i've worn out my welcome with some family members......it's only us here on the boards who can really fall on each other!!! THank you I will read these over and over!!!! if we can't figure this out SOON!!! we will probably procede to ivig....the days are beautiful here is GA ....but as many pand/pit kids, ds has horribe allergies..pollen count...5733....i don't know if the count has ever been higher...i looked back the last couple of years...highest..3500 His screech, every 15 minutes...i wonder if its related to the allergies..is so high my ears hurt...this just started about 5weeks ago, same time we started new treatment phase....clearing constantly, etc ..we have currently stopped everything....His head nod/whip is so hard, i thnk he might fall over...he hasn't complained of a headache or muslce pain???? says it feels things are crawling in his head and biting and wants to pull his hairs out...and some of the hairs feel like they are falling out.....he is controlling it...but when i see him searching for a hair i help remind him....we reintroduced nac yesterday Can someone or me start a PRO/CON Threads on ivig...ie helps allergies, may exasberate things for up to 6 weeks...blah blah blah in an easy, not so medical language....so when us, not so medical people read it on a simpler leverl......

Buster and EAmom,,,, ds has no aso or antidnase....but he's had strep 8-12 times in his life..... current tests show nothing....cam was 105 myco p igg about 320 pos ds score 631 we did clarith...maybe some change??? when we added augmentin.w/i 24 hours i felt like i was really seeing something but didn't want to get my hopes up...w/i 6 days he was 50% + better.. when then had some allergic reacation....going to delv...further into lymes.... But do you think his positve reaction to aug was that are really fighting strep????/ What are your thoughts.....t thank you!!!

Micheal...i will miss you!!!!!! creepy crawly thing, is what my son says is under his skin!!!! I wish you ALL the best...you do what you need too.....BUT once you are better...you better come back and tell us all about it....as a recovering ANDAS/ITANDS patient!!!!!!!!!!! God Bless!!!!

Thanks everyone...i need the boost of you guys.... i'm trying to hold on... Vickie i keep that prayer lamenated, in my back pocket ,,,not kidding and a rosary in the front...i've stopped praying...i'm so tired...i just keep them on my body and sometimes hold them.. A lovely friend of the family gave it to me...she was like a direct line to heaven...she and my parents are up there now....i just wish i could talk to them.. anyway... the zpack was 500mg day 1 and 250 the next four I started looking into ivig more seriously last night..that's how i found the link i posted last night if he were as mild as he was those couple of days on aug i wouln't bother...but it is constant and pretty severe i've done the gamet of things prior to now ,gfcf, exercies, tmj,..as i could get a doc to give me abx.. doc k wanted to go right to ivig...but he went mia once i got my labs and doc t stepped up so we did the clarith, burst,....added aug....stopped aug....waited, did zpack.... i going to get igenex test...he said easten blot(version?)....LYMEMOM...what do you think.... we did western via quest(neg)....but maybe i need a better test and then restart some abx i see bubbbasmom is having a bad time?????? i emailed doc t last night and mentioned i am becoming more interested in ivig...... of course doc k is ready...and he has the most experience what about doc B in Ct..he is also an immulnoligist??/ anyone have thoughts on next abx? if i go ivig..doc k or doc b... does doc k let you do it in your own area or do you have to go there???.. i guess i could make a trip out of it. i want to do it in june so he has the summer to recoop...