Prednisone Burst

[Santi]

We have just finished a 5-day prednisone burst and watching our son's behaviors for the next 2 weeks to see if there are improvements for diagnostic purposes.

 

Does anyone know the specifics of this goal? Do we want to see improvements for the full 2 weeks or even for a few days? How much improvement do we want to see? Full recovery from all behaviors or just some behaviors would be acceptable? Andrea

[mama2alex]

We only saw an improvement for 10 days, then our ds caught a virus and everything came back. He was significantly better during those 10 days, but not 100%. We've had good results with IVIG, although he's not 100% better yet.l

[Santi]

We only saw an improvement for 10 days, then our ds caught a virus and everything came back. He was significantly better during those 10 days, but not 100%. We've had good results with IVIG, although he's not 100% better yet.l

How often do you do IVIG? Is it really better than a good course of abx? Andrea

[mama2alex]

Antibiotics weren't working for him. We only did one high dose IVIG treatment in December. I think if a child gets well with just antibiotics, that's obviously preferable. But if antibiotics aren't doing it, IVIG is an option and many kids have gone into complete "remission" using this treatment.

 

We only saw an improvement for 10 days, then our ds caught a virus and everything came back. He was significantly better during those 10 days, but not 100%. We've had good results with IVIG, although he's not 100% better yet.l

How often do you do IVIG? Is it really better than a good course of abx? Andrea

[EAMom]

We only saw an improvement for 10 days, then our ds caught a virus and everything came back. He was significantly better during those 10 days, but not 100%. We've had good results with IVIG, although he's not 100% better yet.l

How often do you do IVIG? Is it really better than a good course of abx? Andrea

 

Even if you do IVIG, you would still want to stay on antibiotics. If remission is gained with IVIG, another strep infection could trigger PANDAS all over again, bringing you back to square one.

 

Some kids gain meaningful remisssion on antibiotics alone (eg. "Saving Sammy" and some on this forum)...but many end up needing IVIG (and/or plasmapheresis) as well as long term antibiotics.

 

Buster's FAQ will help answer your questions. http://www.latitudes.org/forums/index.php?showtopic=6266 You can scroll down the the section Treatment: antibiotics and the section Treatment: IVIG (both are about 1/2 way down the FAQ).

 

I should add that for many kids who get remission on antibiotics, it's not from a single 10 day course...these kids need to stay on antibiotics for years, often full-strength, and usually something stronger than amoxcillin (eg. azithromycin or augmentin). As an example, "Saving Sammy" was on a high dose of Augmentin XR for a year, and then a lower dose for another 2 years (meanwhile, he went through puberty which may have helped his remission). Even to this day, he sometimes gets symptoms (and he goes on a course of antibiotics).

Edited April 24, 2010 by EAMom