is IVIG a cure?

[EAMom]

You might find this helpful...FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

and

 

IOCDF info on PANDAS:

http://www.ocfoundation.org/PANDAS/

 

per Dr. Murphy (at the 2011 IOCDF conf) "my child is addicted to augmentin" could be due to:

1) decreased infections 2) immune modulating role of antibiotics 3) there are trials of clavulate for depression/anxiety 4)glutamate transporter (down arrow)

 

in the 2012 conf. Dr. Murphy said this:

My Child is Addicted to Augmentin

•It may be because the clavulanic acid passes the Blood Brain Barrier.

•There is a clavulanic acid study that shows may help those with anxiety disorders.

•Antibiotics may be doing more than fighting infections.

•Benefit of beta lactams may be providing neuroprotection along with other benefits. This has been shown is ALS ( Amyotrophic Lateral Sclerosis) treatment as well.

 

You might also check out PANDAS network.org They have posted the 2012 IOCDF notes which you might find interesting:

http://pandasnetwork.org/2012/08/iocdf-conference-summaries/

 

and

http://pandasnetwork.org/2012/08/iocdf-conference-parent-summary-2/

 

I should add that others are having success with long-term Azithromycin which is also immune modulating/anti-inflammatory (and gets mosts strep and most mycoplasma).

 

Also, some of us believe that our kids may have chronic strep (not completely eliminated with a 10 day course of antibiotics), perhaps hiding out in biofilms or the sinuses (made worse by an abnormal immune system against strep?).

 

Also, PANDAS kids react to strep exposure, a full-blown infection isn't always needed to trigger symptoms (although granted, a full-blown infection will be worse than just exposure).

 

Have you read Saving Sammy? although I don't agree with the author's info on titers, Sammy's experience with antibiotics ("addiction to augmentin") is like that of many PANDAS kids...he was on full-strength Augmentin XR for about 2 years. Initially he responded to pen, but then regressed...then he responded again to Augmentin...when his mother tried to stop the Augmentin, his OCD would return. I don't know if he eventually "outgrew" PANDAS...or the 2 years of Augmentin was enough to finally kill off whatever strep he had, or allow his immune system to self-correct. (He was on the older side when PANDAS hit, 11 I believe, so I wouldn't necessarily expect 2 years of abs to "cure" a younger child.)

Edited August 29, 2012 by EAMom

[EAMom]

are your kids getting strep cultures from anywhere else than their throats?

he still has his tonsils...they look ok.

 

apparently you can't always tell by how the throat looks.

 

Also, strep can be in the sinuses, gut, or rectal (ask him if he itches when he poops, and check his but for a ring/rash).

 

Lots of PANDAS kids are also PITAND (react to other infections)...maybe it is once the wheels of autoimmunity are set in motion by strep, then anything that triggers the immune system (allergies, infections, vaccines) can cause pandas symptoms.

Edited August 29, 2012 by EAMom

[Basilbeth]

I do not believe there is a cure. There are treatments that help induce remission. We did IVIG in May 2011. Our son was sick for 1.5yrs before diagnosis and we waited 7 months after diagnosis to do IVIG, some of which was waiting to switch insurance and some was waiting to see how much improvement we could get w/ long term abx. By the time of IVIG, our son was moderate in severity. We thought he was actually mild. We had no idea the amount of improvement we would see after IVIG. It was the way to go for us. DS is actually in a flare right now and on treatment dose abx but his symptoms in the flare are no where near what they were preIVIG. Go see Dr K.

 

how long of a remission was you son in between ivig and first flare up?

did you change your assessment of him being what you thought to be mild, then to moderate, based on his behavior after ivig and having lost sight of what his baseline was?

what would make you get a repeat ivig?