IVIG starting to take effect

[mdmom]

DS15 had his first HD-IVIG 12 days ago and my husband and I have been waiting to see some effects, good or bad.

 

Today was the first day he seems "off." Things I haven't seen in at least a year (since we've knocked down infections) are coming back: old compulsions(without the obsessive thoughts), sensory issues, agitation, trouble with math problems. Classic PANDAS/PANS symptoms.

 

I guess it sounds weird, but I am glad things are getting stirred up and I know that often kids will experience a "turning back the pages or peeling the onion" effect after steroids or IVIG.

 

My question is this: should I treat this as an exacerbation and dose ibuprofen to reduce brain inflammation or just ride the wave?

[nicklemama]

I would dose with ibuprofen. I say this because that is what I did. DS is two months post IVIG 2. It helped a little. It has taken 6 weeks to see good improvement.

[norcalmom]

I'd absolutely treat with advil/ibuprophin. You also don't know for sure, since its cold and flu season, if he is flairing from the IVIG (probably) or he's coming down with something.

 

Good luck - we saw some ups and down for about 4 weeks post IVIG..And DS wet his bed for about 2 weeks straight, and previously he would only have a couple wet night when he was about to exacerbate. But the post IVIG - was its own weird thing.

[ptcgirl]

Yes, use advil. Hope you start seeing the good results sooner than later.