low-dose monthly ivig

[mom24pandas]

Wondering if others can share any recent experiences with low-dose monthly IVIG? I know this has been discussed extensively in other threads but couldn't find one that was very recent, so would love any updates from those whose children have had this. Dd8 has "normal" immune function, at least per bloodwork (everything is low end of normal except high IgE). She does have specific antibody deficiency (like a lot of our kids she failed pneumococcal titers) and has some slight imbalance with memory t cells. Immuno and neuro (whom I really trust) both agree low-dose (.4 g/k)is the way to go. We did one HD infusion a year ago and saw gains but they didn't last...well, I guess I should say there was a lot of up and down and some symptoms definitely remain, but overall she's in a better place than a year ago so maybe the gains did last. Any experiences/ feedback with the lower dose would be appreciated. Did you see improvement? If so, did it take longer to see impact vs. with HD? (We saw some dramatic effects within the week for our HD infusion, though it was really up and down). How are side effects with LD vs HD? Thanks in advance....

[cynditk]

With LD IG you would be treating the specific antibody deficiency/immune deficiency, not the PANS. My son has done LD IG for 8 years due to what started out as antibody deficiency, and seems to be progressing toward CVID. It is very important to treat this as if you don't your child will be open to getting more infections and triggering more PANS. My son has also done hd IVIG, and it seemed to slow the PANS down, but my son also has Lyme disease so he is constantly getting triggered. You can only get hd if its recommended for treating PANS, and it sounds like they are not recommending this.