Post-IVIG or Post-PEX, are you off the long-term ABX?

[Sheila99]

Just was curious if those who went the IVIG or PEX route no longer has to take ABX on a long-term basis?

[peglem]

We do IVIG every 3 weeks and are still on zith long term.

[PowPow]

My 12 yo daughter had pex in Jan 2011 & IVIG May 2011.

Doing beautifully.

On 250 mg Zithromax QD.

[nicklemama]

IVIG May 5,6 2011. 250mg augmentin sid for at least a yr.

[Mary M]

IVIg #1 June 2010-augmentin 875 mg twice per day for 1 month, then 500mg once per day, increased to 875 mg twice per day for every bout of illness

IVIg #2 March 2011-augmentin 875 mg twice per day after trying 250 mg twice per day and deeming unsuccessful

Mary

from Michigan

[Worried_Dad]

For our ds, IVIG (3 rounds) alone was only a temp fix until we started treatment dose ("Saving Sammy" dose) of augmentin XR. He's been on that dose for almost 2 years, and only after starting it was he able to sustain progress.

 

Based on our experience, I'd strongly recommend continuing abx (at sufficient dose) to guard against re-infection. I believe Dr. Latimer, for instance, keeps her patients on abx until "PANDAS is a distant memory." Every kid is different... but it's heartbreaking to watch IVIG gains disappear after subsequent exposure.

[mom md]

Two years post PEX and post 4 rounds of IVIG, son is 10 and doing great. He is still on azith 250 qd. Doctor has him take it for immune modulating factor and some step protection (although other antibiotics like penicillin would probably work better to prevent strep). azith is used a lot in cystic fibrosis kids long term for immune modulation as well. Plan to keep him on it or something else till he is an adult.