Jump to content
ACN Latitudes Forums

My son has PANDAS

Recommended Posts

Yes, if inflammation is a significant contributor to PANDAS/PANs behaviors, a steroid "burst" usually results in a reduction of those for a short period; however, it's my understanding that a "burst" is predominantly used as a diagnostic tool to determine if significant inflammation is at play.  A somewhat longer course of steroids has been prescribed by some docs for treatment purposes, though we didn't utilize that for treatment ourselves, so I'll have to leave it to others to chime in on that.

As for IVIG in Washington State, I'm not sure; there is a list of "doctors who've helped us" among the Pinned Threads at the top of this forum, so perhaps there's a name there in your area.  I'm certain there are some in Northern California/the Bay Area that offer IVIG, but again, hopefully some others will chime in here before too long.

Good luck!

Link to comment
Share on other sites

First steroid burst in 2016 for DS17 worked wonders, so there was inflammation that responded. All tics and rages diminished by the end of the taper. The  2nd day of the burst was bad (like 'roid rage' but not sure that really happens w/prednisone). Second burst this year did not help; DS17 has been in a flare for 3-4 months, so we're again looking at other GI and immune issues.

IVIG: We need a 3rd round based on above, but are in N. CA.


Link to comment
Share on other sites

Thanks. We have an appointment with Dr K in Illinois in 2 weeks and will most likely do IVIG. I am hoping for a positive response. A 2017 paper by the PANS research consortium lists some detailed guidelines for the treatment of PANDAS with immunomodulatory therapies. Also, the State of Illinois has passed Charlie's Law making it the first state requiring insurers to cover the treatment for kids with PANDAS. I am wondering if it is covered for people from out of state having the treatment/procedure in IL or if you have to be an IL resident?

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Create New...