melanie

???? Now im confused..I couldnt fill the script,Bcbs said off label My Psy will file with them but hes not using it yet..What about NAC??

But whats my choice,really? If this is helping ALOT what can I do

200 mg 2x daily i only give it 1x a day hes 135lbs 16 years old

Im at work so I dont know the mill..I will look when I get home.He also takes a baby asprin with the celebrex.She did prescibe it 2x daily but I only give it to him in the AM Melanie

I didnt know there were actual studies.I think Dr J started it thinking he had inflamation from his asthma(mild asthma) The last visit she told us to stop,so we did but I started seeing him behaving a little more than he was so said let me see and so well it seems better Melanie

Ok so we went off celebrex and I definitly noticed a bit of a increase of behavioral symptoms.Not bad but more frusterated .So I thought why is it because the the IV is wearing off ,maybe,so I decided to start the celebrex again and bamm right back to our happy place .Not so sure why it works so well or if its that or not.This is usually our bad week Iv #13 friday, But if celebrex helps celebrex it is!! Just trowing it out there Melanie

bump

went to pick up the script and couldnt get it.Seems its 2,000 dollars and my insurance want to talk to the dr pre auth.So cant start until next tweek.bummer.I asked danny if he wanted to try it hes so cute he said what the heck ,cant hurt.Gotta love him. I hate to start a med when things are so good.Kindof just want to leave well enough alone ya know.But we still see him getting stuck in his own thoughts and that causes him some frusteration. Funny though the phamisist said she has never dispenced this medication.She asked me what its for and when I told her she was like never heard of this being used for that,and that its probably not approved . Melanie

what was the dosage that you used were starting at 25 mg at night moving to 50mg

How come I never get the answer I want like the best choice ever my kid is cured LOL Thanks Melanie

Got back from Psych visit and she gave danny a script for Riluzole.I had an interet in this about a year ago and she said no not yet Glad to see Medical community catching up with me.LOL dropped off the script Think we want to try looks promissing for OCD. Melanie

We do alot of blood work with DR J and I jut recieved the latest Highly significantamount of M.pneumoniae specific IgM antibody detectd >950 Mycroplasmpneu. IgG Abs 726 Antistreptolsin O Ab 256.5 what is this?? Iga 53 Igg 2326 igm 73 igE 33 Lyme .91 Equivocal huhhh?? ill call Dr J tomorrow Remember he does IVIG every 21 days so are these numbers scuewed?? Thanks Melanie

Hi things have been going well here but danny has developed a dry cough.Asked to test for mycroplasm but since he does monthly IVs dr J said it wont be accurate. He on inhaller Im just throwing it ouy here Thanks Melanie

Hi Jodi What treatments are you doing for Lyme and bart and who are you using ??also what are you doing witht the IVIG stuff??Im lost and confused .Hows he doing I thought things were good??? Melanie

Hi We to have BCBS and PANDAS is not covered as a primary dx .We get IVIG and it is covered under imm def and cronic condition is PANDAS .Be careful with how they send it into the insurance. Im very happy your getting the treatment Great Pediatrician .Mine stinks he cant do anything except prescribe advil(LOL) Melanie

No We are using iot because OPtigam was recalled and insurance wont pay for Gammunex

Were using gammaguard because Optigam was recalled .Instead of 7 hrs it should be 4 so hes happier. He had a horrible day yesterday and I think I have a sinus infection.Maybe he has something too/ Melanie

Hi YES we do home infussions and have since Jan 2010.Hes haveing #12 ntomorrow .We use walgreens optioncare and the nurse comes and its great..We did our 1st one in the hospital and I wouldnt have it any other way .. If you have any other questions please ask Melanie

wE HAVE SWITCHED BEFORE..First we did Gammaugard in the hospital Then when we started at home we didPrivigin We didnt like that at all..Now back to Gammaguard.I waiting for Wallgreens to call back still Melanie

No One thinks its a problem to switch brands ..The nurse said its ok and Ill speak to wallgreens today This is crap ,,CRAP I say!!! As long as he gets what he needs Im fine melanie

how come Dr J didnt say anything about the switching issues? melanie

we use walgreens I think thats who Dr J likes..Why does one Dr like gammaguard and one like gammunex?? Melanie

wait how about Dr B If he uses gaamunex and I was approved through him why would it be any different for Dr J/ melanie

thanks uggggghhhhhhh!!!!!! whats the big deal for gods sake !!I have to wait until tomorrow to talk to anyone Melanie

Optigam is recalled Dr J wants to go to gammunex 10% My insurance company only will pay for gammuguard It never ends What does dr K and B use anyone know? Melanie