Fixit

Hey dad... is your daughter still on high dose aug.... how long has that been since you started the high dose??? how long before you think you try to drop it????? and do you see any lingering symptoms??? Thanks Dad!!!

hi amy...did you get to see p,mom question...... if you could ...does your daughter have any residual symptoms.... like if she gets anxious...i wouldn't be surprised if so....it hasnt' been that long...but it sure would be awesme is she didn't

i am not the expert , but incase no one else gets to you soon.. i have heard 8-12 weeks to possibley redo ivig.... you are only 5 weeks out...i hate to say' only" ..i know it s(*&&!!!!!!! nancy d said it took a full 2 1/2 months to see improvment both times a year apart...nothing till that point... maybe you want to schedule it out for 2 1/2 have months...and maybe that would give you peace of mind knowing its scheduled... and maybe enough time to see recovery and then you can cancel......... but i think doc k said not to worry about 2nd ivig and let it run its course unless the child is reexposed and relapseing.... it sounds like you think he got somtehing else?????? you might just want to schedule that 2nd round.... i don't know if i'm of any help.....it is so hard to be calm and logical when you are in the storm...

i also have chosen to avoid some people.....some will reach back out and you just don't talk about it.... i would seriously suggest no matter what reason...to print every research paper...keep the links to any pod casts, videos.... and if you really get into it, you put the folder in their lap....maybe have it ready, so if some words come up...you can say..."i was expecting this"...don't get into it...just read and lets have a nice visit.... we are fortunate to have a very tight family on both sides and i don't want to loose that for my children...but their health comes first, and family good times seconds....but even with that...they leave me alone..as they know i will not budge...and they are preprogramed to follow doctors orders i'm kinda goin round in circles on this post ,,,,,sorry ...but you might , after this coming weekend...start spamming your family with different research papers and such .....i have done this.....they still dont completely get it....but they don't question, so much, why i don't just go to a neuro and do what i'm told.....

Nice!! i score that an 8... i'll one up you on another thread!!!

this episode stated on a 1st disney vacation with the 3 boys...it was tic i never saw before... i feel you sorrow.your pain, the unfairness... as a mom you just want to fix it!!!! if you can try to absorb how your other family members are dealing with it..... Know that, you know what it is... so you will continue your journey of healing when you get home.... it just this trip...if you plan one for next year, your child will be better and so will you.... its just a slow process and the main thing is you are on the right path...just enjoy today..... and please remind me of this when i have my next melt down....as i know...it is easier said then done.... please try to enjoy your time together!!! A big cyber hug from me!!!

epa to ban ddt cousin http://pagingdrgupta.blogs.cnn.com/2010/06...ousin/?hpt=Sbin Like DDT, endosulfan is persistent in the environment, accumulating in the tissues of fish and mammals, including people. The chemical also becomes airborne and has been detected thousands of miles from where it’s used. “Endosulfan is an endocrine disruptor associated with birth defects. It’s hazardous. Getting it out of commerce and out of the U.S. has benefits all the way to the Arctic,” Sass said.

epa to ban ddt cousin http://pagingdrgupta.blogs.cnn.com/2010/06...ousin/?hpt=Sbin Like DDT, endosulfan is persistent in the environment, accumulating in the tissues of fish and mammals, including people. The chemical also becomes airborne and has been detected thousands of miles from where it’s used. “Endosulfan is an endocrine disruptor associated with birth defects. It’s hazardous. Getting it out of commerce and out of the U.S. has benefits all the way to the Arctic,” Sass said.

seriously????!!!!

it may well be... how old was your dd again... i think it was pacific dad... ..did ivig 1 time for his child and no relapses and its been 2 or more years...i think... lets put out the good vibes for your daughter too!!!

i am equally curious as to no answers....hopefully you wont be shy...the board is fairly anonymous... i get that sometime you just don't want to get into it.....but if you could....... do you need a lower recovery rate listed, like 30% better hasn't enough time gone by to really see results...ie maybe its only been a month or 2 months... you had some other infections you have some co- condition....trauma,injury,blood disorder you know going in you will need more than 1 treatment or lifelong treatment these are a few of the thousand questions i haves

thanks for sharing the good news....hopefully its another open door it doesn't help me...but i needed to hear some good stuff!!!

i know that celiacs have been associated with seizures... and some theories out there that tics are like constant little seizures

That is what i think he means as welll..... and not in regard to what doc k is suggesting...but on my own...when i posted that mayybe you are cured if you could go 1 year .. if you could go 2 years w/o a relapse ..i would say you did it!!!! meaning the system is doing its job..partially from doing preventative maintanence and letting the body heal so it can do its own work.......i think we can get these kids bodies to do that!!!

go ahead and vent.... didn't we decide also that we suffer from ptsd anyway?!?!?!?! this is not our issue but when ds was younger we'd try to give more transisiotn time ok..leaving in 15 minutes...ok leaving in 10 minutes again he would not be as bazerk as some "normal"kids...but what ever i could do to make my life easier, as i was main(only) care giver, hubby was usually out of down during the week... some things they can outgrow depending on degree and working with them.. i would and some teachers would say he has/had add/adhd...and agian i feel like he was minor when i see true add/adhd kids...i wouldn't even put him on the scale when i see some....anyway ..one thing that we got from brain balance when we did it was that...it was at the end of his 9yr old summer...so was it just time to outgrow it.....seems coinky dinky though!! l

that must be that 1 summer week between july 14th-21st... that was nice!!

i get it...i try to (not successfully tonight) not look at this after dinner..i go hide in my room with a glass of wine usually... you will be missed... come back after what ever time you need!!!!!

over on the TS board..its caryn, she had a radio thing too http://healthy-family.org/forum/index.php?topic=2.15 i would ask her about any ceiliac info

Yah..can you guys move to GA.... i really need a doc here!!!! Just 1 doc!!!

thanks for the info..and your understanding of it

not that it matters..are they saying the brain resolved on its own...but the child still had movements so they did cort and immun.... or as result of cort and immun..the chilld recovered in a month??

THis episode from over a year ago started in his legs!!!!!! we have constant movements all over the body now!!!!!! THANK YOU!!!!! Again neg igm pos igg 637...now numbers look better but he doesnt'.... did i hear the myco p can hide in seperate organs or just the spine!!!!!

you did GREAT...what an awesome come back with nephew ..make sure you repeat it as you go!!!!!

i would have said that between my sons episodes...he was cured...it was like a miracle i took for granted each and every time.... with that said...it doesn't seem as though strep is his enemy the last 2-3 years...it is some other illness, as no pos strep info, but complete remission per abx...so my so may have out grown, the strep thing... now i think, i have to heal him,(in our regards, stop the overdrive system as i think i have gotten rid of what may have been infecting him) so that what ever is going on, isn't doing what ever its doing anymore as his brain matures to fight off these things on their own,,,, i know that doesn't answer any scientific question...but i think it's a matter of trying to heal them as much as possible, so this new wiring doesn't get locked behind the doors as the brain shuts its doors (as the brain solidifies) if that makes sense i think waxing and waning is different from the experience of ivig...with those 4 beautiful days i had in march as an example..i would not pursue further treatment if he could have held that state..... now all his markers are just pointing auto immune issues..camk, urinary neoptrens,there was somehing else scott mentioned..it is just fight itself(no attacker) i have not done ivig... i wish and continue to hope the things i am doing in the mean time do more...and if we do ivig we will be in a better place before going in and he wont have as much to fight and i think if ivig works i could see 100% too if i can keep him at his healthest state, and when i know of infected people, keep him away... and i would guess if you can go 1 year you are close,,,if you can go 2 i believe you did it!!!!! just sharing my thoughts....i am freaken scared!!!!! to do it...to not do it......

Thank you from the bottom of my heart. I expect to take alot of tissues this evening, not only for me but for my husband who I think is now really showing all that has been bottled inside for so long. i bet!!!!! you might want to bring him his own box