Anti Inflammatories and Immune Modulation

[EAMom]

I suspect one reaon lots of these docs see IVIG as a "last resort" b/c it is expensive and often not covered by insurance...although things are getting better in that it seems like more and more folks are getting covered lately.

 

I think it makes sense to do other things first (eg. immune workup, high dose antibiotics, a burst or course of steroids etc.) before preceeding to IVIG. If nothing else, this (hopefully) gives some relief of symptoms so the child can tolerate the many hours of IVIG better. And, there are a (smallish IMO) percentage of PANDAS kids that will get excellent results without IVIG.

 

That said, I do believe that the majority of PANDAS kids really are going to benefit from IVIG...this is coming from a parent who was VERY (in hindsight, overly) cautious about IVIG. When we finally did it, it didn't end up being such a big deal, and I sort of wondered why we had waited so long.

Edited May 20, 2010 by EAMom

[tapiash]

I suspect one reaon lots of these docs see IVIG as a "last resort" b/c it is expensive and often not covered by insurance...although things are getting better in that it seems like more and more folks are getting covered lately.

 

I think it makes sense to do other things first (eg. immune workup, high dose antibiotics, a burst or course of steroids etc.) before preceeding to IVIG. If nothing else, this (hopefully) gives some relief of symptoms so the child can tolerate the many hours of IVIG better. And, there are a (smallish IMO) percentage of PANDAS kids that will get excellent results without IVIG.

 

That said, I do believe that the majority of PANDAS kids really are going to benefit from IVIG...this is coming from a parent who was VERY (in hindsight, overly) cautious about IVIG. When we finally did it, it didn't end up being such a big deal, and I sort of wondered why we had waited so long.

 

That makes complete sense. My doctor did say it was expensive and it was difficult to get an approval, not impossible It kind is of crappy so much is in their hands or control. I wish we had more say in our child's treatment. I think so many of us parents want immediate fix, me included. This whole process has been about waiting. I am all waited out!I want my son back.

[EAMom]

the pm.

[tapiash]

the pm.

 

Me too

[peglem]

the pm.

???????

[EAMom]

What insurance do you have? Some are covering IVIG for PANDAS now.

 

Also, there are parents that have had success with coverage by having the docs code their kids with alternate disease such as "autoimmune encephalitis" etc. There are threads on this.

[tapiash]

What insurance do you have? Some are covering IVIG for PANDAS now.

 

Also, there are parents that have had success with coverage by having the docs code their kids with alternate disease such as "autoimmune encephalitis" etc. There are threads on this.

We have Cigna. They say they will cover it under autoimmune disorder NOS