9 weeks after 2nd HD IVIG

[Rain]

My DS12 had his second HD IVIG 10 weeks ago. After first IVIG (August 2011) we saw recovery after 12 weeks - which increased gradually to about 90% recovered. He hovered at 90% until he got pneumonia in May 2012 - and slid to say 40%. He bounced back to 75% recovered over the summer so we decided on a second IVIG in September 2012.

 

About a week after his 2nd IVIG - his OCD came back in full force - as bad as I had ever seen it. He was in Augmentin 875 twice a day. I hoped he was just "turning back the pages," but instead of improving, he got worst. We continued the high does Augmentin. On my insistence tried the "Saving Sammy" dose of Augmentin XR. That made him "worse yet" so we switched back to regular Augmentin (and he was maybe slightly better). Finally about two weeks ago we switched to Zith. The Zith seems to be better - but he is still way way worst than he was prior to his second IVIG - maybe up 15% from his worst.

 

Is it OK to panic? We could do a steroid, but the Dr. recommends we hold off so not to undermine the IVIG (I admit - I do not understand how steroids interfere with IViG).

 

Other ideas?

 

What have I done? I feel like I should have left "well enough" alone.

 

Suggestions welcome. Thanks.

[Rain]

(Sorry for all the typos! On mobile device!)

[mama2alex]

I'm really sorry you are going through this. You definitely shouldn't panic - you WILL get him through this. What you describe sounds like herxing to me. This is when the body gets overloaded with toxins from the die-off of infections (viruses, bacteria). The IVIG can introduce antibodies that kill off infections your son's own body wasn't dealing with. Then additional antibiotics could have caused more die-off on top of that. I would try doing aggressive detox. Your doctor should know how to do that or you can ask for ideas here. Things that have helped my son detox are lots of water with lemon, Bentonite Clay, Epsom Salts baths, and Burbur.

[LNN]

My son had a very bad experience with his one and only HD IVIG - 10 weeks of worsening. Took months to get back to where he was before the IVIG. Lots of kicking myself for stirring the pot. After the tailspin, he was dx'd with lyme and bartonella. He's gotten progressively better from treating the lyme but it's been a long road and we're not done yet.

 

Form what I can gather from some people seeing great results from IVIG and others not so much, it seems that those with some underlying/chronic infection are the ones more likely to struggle for long periods of time post-IVIG. Not sure if you tested to make sure the pnuemonia infection was gone. That may be one possibility to pursue. Or test for lyme. With the worsening on Augmentin XR, sounds like there's some sort of bacterial infection still in the picture. I agree it sounds like herxing and detox could help. We use milk thistle, alpha lipoic acid, sometimes resveratrol, and sometimes activated charcoal. We also use motrin 2x/day during flares.