Fixit

ok ....i'm a little freaked out.. Ds is having an allergic reaction to Aug I thought i'd look up clarith and it side effects list ,,,spasms in the throat and breathing tubes Ds vocal came back and way up to a screech...about 3 days in...we are still on it... vocals are down, but is that due to the aug or is his body adjusting i just looked at azith...and a side effect is throat irritation an irritant can send things into a spasm just like dental work does i wonder if i stopped the clarith if tha would help but i 've got to give him something, it looks like they are working...just ride out the storm Ds used to respond wonderfully to azith..!!!!!!! Faith ...on a note about mood you asked ..is that enough to measure.....i would say no....but, when you have less crankies, that is just nice in general.... i am getting more thank you's and other sturff...or maybe he's growing up...i'll take it

Hi melanie......not trying to rock the boat..and it''s nice to trust someone...and its good you are getting someone to listen 'somewhat" but the statement......"says main stream medicine isnt doing this "....just......i'm biting my tongue.......main stream medicine doesn't recognize pand/pit i don't realy know the iviig thing yet.....just starting to really think about it. I think switching to gamunex will be good!!! IT's just that that statement rubs me... I think pit/pans it an autoimmue issue to, on some level. You will get there!!!

we stopped augmentin 24 hours ago because ds started having some really big joint pains and in groin... he was still hurting this moring...he is pretty good now....HOWEVER!!!! i'm not sure if i'm seeing a ramp up in tics!?!?!?!?!? We are supposedly dealing with MP which i understand.....but i wonder if strep can be like lymes and ebv and just hang around and that is the real issue ,underlying ..and maybe myco p i secondary....i saw a marke improvement 24 hours after starting aug.... we are 30 days into clarith one more thought per lyme mom....could he have lymes and that is why he is reacting to the augmentin...Are you not supposed to do augmentina if you have lymes??? how quick did sammy relapse the first time he stopped the first time? my son has had great experienced with azith in past....i was hoping to add aug to our list ...but I AM SO SAD....HE'S PROBABLY ALLERGIC...AND THINGS WERE SO GOOD THE LAST COUPLE OF DAYS......what is it about augmentin..........what if that it the one to do the trick and we can't use it!!??? Trying to get ahold of doc t again.....I called doc k's office he was out and i really feell like doc t has helped so much......but i want to try using abx for a real trial (a couple of months)first....i will use ivig but i want to try the sammy way, as our prior successes and it seemed to be working again......i'm afraid doc k won't go that route and i know doc t thinks you don't always have to use ivig to have success......I just want to go work in his office for free to get him set up/organized/ help with the paper work and he would only have to field the calls I don't want to loose our gains Has anyone done ivig or pex just 1 times and measurable enough success that stuck and not need to do 2...... if pandas isn't recognized and we have to pay out of pocket i don't know how many we could afford....maybe have to wait till he's older and catch the perfect wave where he is less likely to get sick/young enough to have it work!!! Does anyone have any suggestions?????

when i just replied on my other thread that my sons ebv came back neg.....that was about 10-14 into biaxin...would that make a difference? ..that wasn't a full ebv panel...just like the western blot wasn't igenex or a full panel.. son still having hives...however he said both hands were hot earlier... and he fell at school on fri...that night we ices wrist and gave ibf.....next day ok..later hand swelled after soccer and went to make sure hand wasn't broken...as we were there the inside of his foot hurt so we checked that too..all is ok today...left side hurts ...i was relating that to fall...but now he side joints on his right side are starting to hurt....is that an allergic reaction to the AUG or could it be a co- of lyme or ebv... i'm just left messages all over for doc t..hopeing he'll get back to us early tomorrow and give us azith.... I don't want to stop or lapse.....as so friday and sat...thing were about 50% better....a marked difference once we introduced the AUG we are about 24 days post burst and doc k said that could take 4 weeks????? i think it's the aug based on my prior experiences with abx...but i could be wrong...it's been a year since onset...and like dut...if the myco p didnt'come up it would all the no pun intended..evidence i would have.....i hope the azith will work as good this time!!!!! of course i want him fully recoverd but if i could get him to 70-80 that would so livable.....understand i have perscripton for cholinde i never filled I JUST KNEW...that was the wrong avenue...and if i went there...and much longer would it take with the masking and which drug is doing what...and if that didn't work, trying the next drug, the next....and the time and the waiting...when i knew it was some infection... IT MIGHT NOT BE MYCO P.....i still wonder if it's underlying strep....not showing up on any test(just like lyme or ebv)...or a combination ....or i don't know I'm just so excited my boy is doing so much better...he still flared at the b-day party and videos ..just like sammy had his triggers....but it's been a year and it was getting worse(very bad) and i don't want to loose ground AND if i haven't said it .......THanks to everyone here......OMG......thank you...... sorry about the tangent

an update and some good things!!!! hi vickies...yah some time ago i may have metioned he has geographic tongue colleenrn...i did not test for EBV till after we were on clarith for almost 2 weeks and it came up neg did you just push through the hives.....how did you allergy test for augmentin... i've been giving him bendrey and that seems to help with the itches can you keep a kid on an abx with hives....thing is he's takng clarith too To add to our story, on fri night, found out ds got hurt at school..had to go to cliniic 2 times on sat to see if his wrist or foot was ok..nothing broken.....just keep me going to the doctors thats all ANYWAY.....i am happy and scared...i thought i noticed w/i 24 hours of 1st dose of aug (which we started 3 weeks after clarith) a good 10% improvement in ds...we may have already had 10-20 on clarith....(but i am doubting what i see because what is 10%...and all the years of docs telling you no coralaiont..and it almost being 1 year...and though we haven't be able to get a doc to work with us until doc k&t,,i'm sure you get it) Well the morning looked good, but you don't know till they come home...even though he had hives on fri...i'm not noticing too many tics!!!!! and i keep wating and things are still good...i want to give that day a 6ish (considering when we started this journey i was calling him a 10 at that point and wanted to work backwards,,,,and he did ramp up to an 11 for a while)... Yesterday was aonther great, to me, day...i was a 5 or better.....it was sooooo good.....(on a real scale he looked like a 3)....yes he had a couple of vocals...but i think he can really control them......and now that i started readins SAMMY....it's almost like certain locations and times and they did ramp last night at his cousins b-day party to about a 7 but that was until we got back from the clinic at 7pm...IT WAS SO NICE AND FINALLY I FEEL A LITTLE HOPEFULL AGAIN!!!! Today however i would say we are back to 7 or 8.(his vocals are up while playing videos right now and I HATE IT... Still has hives..says his hands feel hot... He is such a good boy and he won the Honesty award at school,,,,and that is a peer vote!!! ....could it be saw tooth...could it be the party reminents...woucl it be his bruised writst and ankle could it be the burst wearing off.....FRiday was 24 dsay post burst and doc K said it could take up to 4 weeks.... What if he is allergic to aug and that is what is improving everything!?!?!? Guys thanks so much for being here.....really!!!!

remember to take 3x higher dose of vitamin c with that... also,,,did you get to finish the treatment or have to leave early????? and have you given it enought time i have not done that journey..

I got ahold of doc T....he emailed he is slammed he's going to be speaking with Beth Maloney and Sammy in NJ on 4/2...i think!!!.....not sure if it's all confirmed

Son just got home from school....he has hives could it be the augmenton today is 9th day, tomoorow moringin is last dose could it be...and i waw worried about this....i made them a fruit smoothie w/ frozen rasberries, blueberries, coconut milk..a little oj I think he is allergice to salciales ..(the rasberries are my guess)..i do give him blueberry waffles sometimes....but in general he says fruti makes his mouth itch....he can eat apple sauce...cooked apples, some pears...canned fruit the throat thing bothering him in morning was before...the smoothie... i can't get ahold of doc T....does anyone know if he's ok??? i might try to call doc K.... good day at school...says teacher...and he looks good now....other than him rubbing his eyes and hives..... CAN SOMEONE CUT ME A BREAK!!!

To me.....(my son is also allergic to all trees, grasses, weeds.)....my theory.....the body is fighting something (the pollen) and its fight all it can...so that in itself is taxing...then wonder....just as you would get an allergy test...your skin inflames, if that is doing the same thing to the brains of these kids...so maybe its just the inflammation itself.....OR/ANd now the inflamation lets other things in...and for us maybe that was the onset of myco p. if he has post nasal drip. runny nose, shiners, a dry cough(that could be from post nasal drip or myco p) i wyouldn' t be able to tell the difference...we are almost 1 year into this onset...Sons glands were swollen as always when i get him checked and they used to culture strep...as prestning witl illnness. last couple of times...presesnts with illness and would get abx and tics go byby(and ironicly we went to doc the day before this onset as son said he didn feel good,4/5/09 doc thought it was allergies as test came back neg.)next day started jumping 1000's of times a day...we have progressed to multipole ticsa and now vocals... anyway that is my theory.....its causing inflamatoin...on the thread i posted yesterday..i posted today about sublingual.....supposed to be lower dosage...you can do at home becasue there is no concern of shock.....but i have still not started...i'm scared of everyighin.....these are not homeopathic

i give him the probiotics after school and i switch them around son is 80 lbs..i gave 2 soft gels=total of 400mg...i didn't look at mouth...i've got 3 boys and was trying to everyone out door with health food and proper meds each...2yr old just gets under my feet.... i will look when he gets home...yesterday 7 year old said throat hurt..he said that last week...did swabs, they dropped thw long culture one and told me to come back...he's seemd fine till yesterday, today he says he's fine...could all just be post nasal drip...and maybe that is making throat tic more???? i've got to really figure out these allergies...they are thorn bush in my side....i'm affraid of giving him allergy shots for the 4 th or so time...anyone use sublinguals....not homeopathic here are some links included in this site...... http://www.allergychoices.com/se3bin/clien...mp;geniesite=13 thanks for being there vickie!!!!!

Ds is about 2 inch width across all knuckles and some toward thumb knuckle....i can't say his is from washing his hands raw, chafed, kinda crackled, red

i would like to tknow about he red hand too it's my ds' left hand.....the one he flaps the most....(he's right handed) it got way better with polyspoing. but now that we started aug...the had looks normal again...been dealing with this since Nov

i started him on zyrtec a couple of weeks ago...and i'm not sure,even from prior springs if that just makes him more active....not meaing tic, because he starts the spring with no tics, towards the end he usually does tic, but he will present with other illness and would get abx and get better... But this year we're ticcing going into the season...so is it just doubling down on him!!!!! i stopped zyrtec a couple of days ago and decided to just goe withe clear benendry....i think that was the right move......every spring i go through this and i always suspect the allergy med making him more hyper about 2 hours after he got home with the sreams...i remembered the ibf....so i gave him 2 instead of the usual 1 i give...i never "noticed" it helping before, but maybe because i wasn't giving enough......about 2 hours after i gave hime ibf( about an hour after i posted this thread) 8pm.things lighted up..... He is 10...so his bed time is definitely by 9.....was it because he was just finally settling down...was it the ibf this moring things were pretty good.....a couple little screeches he tried to tuck into his sleeve....movements way down... i guess did the vocal replace a motor.....because if it weren't for the vocal things would be about 30-40% better with the vocal???? you can't hide a vocal...even if someone isn't looking at you they know you are doing something And vocals aren't considered "worse" on a tic scale.....it's a personal perception....it's the larenex contracting or other mucsles doing something but more consistant good sleeping...mood is very good...not that as he's grown i can't contribute some of it to that...but just more pleasant moments, i would always say he's a happy kid....but there are just more smiles...you know what i mean??? AM i seeing any improve.....anyone else out there questioning what they are seeing.....is it all just hope and dispare??? Dr K gave a brief reply last night......i'm not sure he's getting the whole picture....any thoughts on that...its friday...i don't think he takes phone calls and all the paper work, as pere prior calls are in a different office on fridays. I guess i will try to call Dr T again....my aug runs out Saturday moring....i felt like the doulbing gave me the more noticable improvement He put me on saving sammy dose....i'm trying to read the book...anyone know how long till tics went away for sammy...I'm spoiled from ds' other remissions!!! PS this moring says it feels like something is itching or at the roof of his mouth??? also his left hand that has been raw since nov...got better with polysporing...started augmenton about 8 days ago...i notice it's healed acouple of days ago...he flaps his left hand the most and he is right handed????? all titers still good a/o a few weeks ago...myco still hight

Could this be rebounding!!! or Die off!!!!....Vocal screech/scream bad!!!! I went to Dr K site and was looking at ADEM would he treat adem differently??/ then i was looking this up http://adem.org/ PATHOGENS ¡X ADEM usually follows an infection, often of the upper respiratory tract. Numerous pathogens have been associated with the disorder. Viruses that have been implicated include measles, rubella, varicella, influenza, Epstein-Barr, coxsackie, coronavirus, HIV, herpes simplex, cytomegalovirus, and West Nile virus [5,6,10-23]. Other organisms associated include group A hemolytic streptococcus, Mycoplasma pneumoniae, chlamydia, Rickettsia, and leptospirosis [4]. what would be the difference between that and pitands...not sure if son failed steriod or not we are 22 days past...i know it can take up to 4 weeks we've had some good days... we started clarith 1 day before 5 days burst...2-3rd day screech started...they were almost gone to a small sound then that night lost filling...had tooth refilled next day and following day vocals were back up.. pollens have been in the 400's already down here in GA Dr T started us on saving sammy dose in conjuntion with clarith...w/i 24 hours things seemd 10% better...stayed that way, then on 3/23, 2 days ago was great..it was weird because the first time ever his teacher initiated contact with me to tell me, he'kkkk,chchchc, and snorting alot i was ready to run away...ds comes home...i don't here anything and the tics were down to a 5.....assuming when we started, we were calling his condition a 10 and trying to work our way down the scale......I know she emailed me...but i couldn' understand.....i was on sunshine....the best day in months 3/24 things are backsliding 3/25 his screams are about every 10 minutes-20 and with the most intensity i've ever heard....I CANT TAKE IT I emailed dr t last night and called 2 times today and nothing? dr k has be mia since phone consutl 2/17....called multiple times...faxed results 2 times...i emailed and he replied he was out of town.. I just emailed him now...will he return something to me tomoorw or will i have to wait until monday?...I fiugred since dr t was working with me i would update dr K as things progressed and he could get a fuller picture So i have 12 days of clarith left,,,2 days of aug to get me to saturday moring... Any thoughts....so always responded to abx the other 10-15 onsets...we had 4 almost 5 months between tic episodes...this has been a year since onset and i believe it's myco p came up 300 pts outside of range(i'm afraid all those other streps really messed up his t-cells------or is MYco p a different monster!!!!

i think you may have to go to doc T....he's the one really going outside of what is "comforatble" ie other than strep

My understanding is that Dr. T. did rx the abs and steroids (which helped decrease the "sneeze" but didn't stop it completely). Dr. T. doesn't have access to IVIG so she went to Dr. B. for that. So, yes, both Dr. T. and Dr. B. treated Lauren. And, the article is a little misleading in that it doesn't mention Dr. T. (or the abs/steroids). Without the abs/steroids we don't know if IVIG (alone) would have been effective. just so people know,,,,it's just more of an indicator of if ivig will work....Dr k still has people who fail and have success with ivig

Yes...jmho...i think once we get pit/pans going it will be realized, that heredity all part of this, not just the the odd case with no other family members why for years will only one kid get ocd or ts in a family with none....his combination of genes and enviro created a new state for him/her....i wonder if that will be a new hereditary state to pass on.... or more families are more predisposed than others

Melanie......this sljonln!!!!!!! I support you and what everyone here has to say in supporting you!! I don't know what to say???.....I just want you to know I HEAR YOU!!! I love you! I feel like we need a suppport gruop(other than this one)... Maybe this time is the one that will do it.....maybe like dr k thinks...doing them to frequent might be striing things and i just needs time!!! Maybe its a combination...like worrieddad...maybe the ivig was the set up his son needed to let the abx work this time.... HOLD ON!!!!!

The Personal Oxygen Bar...as this is called....does not rquire a persericpoin....i don't know how much it puts out per miinute...but there are no refills??? it somehow regenerates it out of the aire itself????..i'lll try to figure it out sometime....it's $598

that is so great!!!!! how many have you done (3)? and how many more do you think you'll do? Or are you stopped and hopefully will never have to do them again one more, can you tell me how long between your childs onset or when signs first started to show up and starting ivig?

I'm sorry, i'm not a facebooker, can i do something else.....i'm not up on that stuff...i had textin option deleted from my phone...you want to say something to me, call me, i always answer and if i'm eating dinner or changing a diaper, i'll call you back asap...and there's email.....

where did you get the machine?// there is an online doc out of ca, who i think is really on the right track in regards to the brain controls all disease... anyway he has a weekly email i get, some great quotes,,some recent research...but he does taught this perosnal oxygen thing... which i would get if it were like 200...but i think it's $600ish

thanks for writing that up?? wornout....does your son have allergies?......in ga ours are out the roof...however, if it rains and cleans the air and i might be noticing a 24 hour lag to rise and fall in symptons

I thought the only symptom was tics, but after reading what other people had to say about behavior changes...I'm wondering. Sometimes it seems like my son will be great (behavior) and then the next day or two....quite challenging......I just figure it's normal kid behavior?? for us it's just ts...but i will note that he may have had sensory issues when younger,,,but nothing crazy...mostly walls and curtains when walking and chewing on anything.....but couldn't that just be normal his handwriting was ok but gets illegible...but again if he's sick or tics are his problem wouldn't that be a motor sKill... Ps as per the other notes i posted about our new little journey...his handwriting yesterday was the best we can remember in a long time..we'll see.. One more but...he used to love to draw...but stopped, he said i just can't seem to do it that good anymore...(and i don't even know if i should mention them because they seem so trivial, because he still does very well in school) but these things pail(so minor) in conparrion to his ticcing every 10 seconds(really)...i might say we are down to 1 every 30 seconds or minute..sometines it can be a couple of minutes but then he'll do a cluster or just one...no pattern i'm just concerned, like lauren's mom, if i got this right...she saw some benefit while trying abx, but i guess wanted to nip it the bud... and as they get older it might not be impossible to recover, just longer and harder..and it still what are we chasing...the current illness we know of or the messed up t-cells and as everyone has a different story... ie...first onset. .how quick were you able to address it correctly, that and every other time childs age how many prior episodes what illness are you addressing .......and an illness that effects you alot, might only effect somone else a little, even w/in a pandas subgroup.. for me..i will keep fighting till he is in remission or i see him into adulthood leading a full, active, social, educational, careered, life based on his decisions, not this diseases limitations it wants to put on him(because i am upset that no one has listed to me or wrote in his notes how many times i said/asked about pandas...and i gave up asking as long as i got the abx because i knew it would fix him ,( until this last time))