Fixit

It was 1 year ago today that Ds woke up ticcing!!!! And the tears wont stop!!!! He's still asleep...very unusual...i keep telling him he's turning into a teenager (10) I thought when we found Myco p we had it....clarith did mininal at best....we were on that for about 30 days But when we added the aug w/i 24 hours, things seemed better and w/i a week it was like heaven...and then a day or 2 later the hives and muscle pain started we tried a 5 day z pack after 3 days of being of aug........eh.... we are taking him off all abx...... let his system rest...... with the aug it was right there at our finger tips.... i feel so cheated!!!!!!!!!!

I was researching ivig and came across this! http://www.fda.gov/BiologicsBloodVaccines/...lls/default.htm

Ditto!!!

What if tics are the main concern.....if my kid was 50% better in 1 day i'd want to know what happened...since he was ticcing at about every 10 seconds/alternating tics if we could get down to 1 every 5 minutes, i think i'd be weeping

This might really be reaching...but it's a thought.... maybe they are actual shocks like static eletricity.......maybe and i believe this ....some people are more lectrically charged tha others.... i had a guy i worked with who would hae to get watch batteries and others a atounding rates......and i too for a while had a time when my watch batteries would only last 9 - 12 months....that was over a course of like 5-7 years and i had a couple of watches i used...... maybe something like copper braclet to ground hime?????????

Yah ..he does ok on some things and if the fruit is process...ie the skins are removed and what ever else they do to them... so applesauce is ok...sometimes i peel the fruit and heat it in a pan, put a tab of butter..just for a little flavor and sprinkle some cinnamon and when i give applejuice...no hfcs, natural, i still add water... I was saying...things that seem so simple, always have a double edge you/i have to watch for....we are always that person that has some other reaction...

HI laurena.. tell us some more good stuff about you kid!!! LOL....ah yes....the memories.....LOL.... (I can laugh about these things now.....poor kid at the time, though.....) I miss understood the dr who told me to give my DS 15 mg three times a day with meals........I thought he said "50 mg" (they came in 50 mg tablets as well)...... that ride in on the school bus each morning was enough to put his nausea over the limit........threw up more than once..... that school bus driver was REAL happy when I realized my mistake....dropped him back down to 15 mg.......and bus rides were "OK" again.....

I'm sorry...but again....he didn't even finish the first round because he pulled out ivs??? are you sure it was a reaction to the sedative????? it could be, just asking.... can you try a different sedative?

and there is AWLAYS a but or unless.. which we fit into ALWAYS you have reaction to salicylates!!!

not to scare you more...but from what i understand the larinex is just another muscle...it might be tic Like when my son want to nod yes ....it sets off the nod tic so a simple yes becomes more But what jag said is true too. I would greatly suggest getting back on the abx if it was working so well and stay on it....Go to doc t's sight and even there in the papers, the patients were on abx;s for months...

why a week ..is he offf for easter? what are his thoughts...die off...different strain of strep... why 5 day doses?...why not the lower dose,, longer???

This sounds identiclta to our story...however with this last onset, ds just turned 9 and cephelexin for 10 days didn't cut it...and we had not been able to get anyone to listen......so i tried brain balance..added vitamins and aminios..there are certain exercises, llike the first mom who would exercise her kid for ahous a day in regards to autism.. you put miusic in the oppostite ear of brain inbalance,flash lights...we went dairy and glutern free for 3-4 months.. we've done the tmj rought...cam k came up boarder line. strep neg...but myco p showed up....and even if it didn't, doc k , who was the first doc we talked to who would listen said based on our histroy, like yours...it sounds like pandas to him....well luckily doc t said get myco test.....clarith didn't seem to do much...but when we added aug it was like a miracle... However my son maybe allergic to it so we had to stop and things are regressing....I am so upset... It's going to be 1 year 4/6/10 and ds is 10

Bet....I am so sorry!!!!! I wish i lived back up in pa or nj and you could stay with me and see doc T ..... Funds are always an issue...do you have family in other countries that may have someone..... There are a a few papers on doc t's website and i think they come out of turkey and germany You may have to do more out of the box than you already do... God Bless!!!

Good Job doing what you are doing... i find it interesting the results you are getting!!! Now...if you are going to the doctors and you are paying the co-pay and you've waited an 1 1/2 hours and like my self have 3 kids....i would also get a blood draw.(my kids, unfortunately are pros)...and here is the list i would start with as a general pand/pit check and you may have to go further from here,,,,,ie celiacs, parasites etc ASo antDNase A B Myco p igg igm tsh t3 t4 ferritin vita D3 mag Bs immuglolbin panel ebv Lyme test..Western Blot...try to get IGenexo(lyme mom can fill you better on this) If anyone has some others i think it would be nice to have a general starting list!!! and this will not drain them dry!!!

Go Gettum!!!

i don't know how it would raise titers...but i would also ask why, for some, do the symptoms seem to get worse for a period after ivig before they get better. i think my theory about silent strep comes into play... mayb like soup thing settle to the bottom...ivig stirs them up into the air(titers were there just resting somewhere) so the medications, ivig can do their work..otherwise its chronic just sitting there and these conditions go on for years or a lifetime.. sort of why i thnk, since ds has had 8-13 strep infections..and he hasn't tested pos in about 2 years(i think) but abx's worked because docs wanted be safe due to past history...and why with ds pos myco p...biaxin sort of soften things...but augmentin seriously almost knocked out ds' tics... i think it is somehow still related to strep in his body somewhere i think strep for these kids my have to be evaluted the same way lymes is JMHO ps,,,i now think it would be interesting to have a titer test 1 week before ivig and 1,3,6,10 weeks after ivig i think that may give some more info into what is happeing in conditions worsending and then getting better

so you had ivig 3/22/10? i think some have said it may be crazy for up to 6 weeks post?? so you had titers drown this week post ivig......maybe that's why it may get worse before it gets better... it stirs things up like dr K says? maybe someone can back me up on that?

Lyme Mom you may have said this already,,,but is it true... if you have lymes..and lets say you don't know it.....that taking augmentin can cause joint/muscle pain and hive.... i am hoping that was my sons case...we did western via quest....neg>>> i want to get an igenex.....other than that, the aug was like a miracle... Thanks

I don't know if caught this on my other post but... has ivig helped with his allergies...i heard that is possiblitiy? so nothing is worse after ivig.....maybe a little better but you have platueaed? maybe that is your sawtooth...an then he will start moving along again???

How badd were you sons tics before plaz? My boys were about 7 1/2 at start and am lining ducks up to medicate..i have script for cholidine found myco p..but i wonder about co-infect after plaz how much better did they get 30-50%? for us nothing not worthy on starting clarith..we did burst too...about 3 days in son developed screech....we are still dealng with that..almost went away after a week but lost fillig and so dental work we started augmetnin aoubt 2-3 weeks in and it was like a miracle.....no one /or most wouldn't notice tics (they did still rise with excitedment) but it was so nice to be by him w/o the constant movement.....But like someone here mentiond...nothing is easy for me and ds seems to allergic...severe joint pain and so tics are back and so is occasional screech doing zith right now...so i don't know...i have to keep moving forward lining things up incase, and so it goes, doen't work... how much have things relapesed? can you do another plaz? i'm sorry,,,how old is your boy again???

what test did you have done ? how much was it? HOw long did your son tic before you found infections? how old is your son? how long have you been treating him? how much progress have you seen to this point? I'm sorry ....did you have any co infections?? thanks

are things getting better and better....meaning...he got 10% better the 1st time....5% better the second 5%better the third,...so by this tme he isnow 20 % better over all... how many more do you have planned?? how old is he i guess insurance is covering this??? where are you doint this(at home? what state?) and what are his issues??

has ivig helped with his allergies...i heard that is possiblitiy? so nothing is worse after ivig.....maybe a little better but you have platueaed? maybe that is your sawtooth...an then he will start moving along again???

what book is this??

Can i ask you which test this was...they have several and how much was it thanks