T_Anna Posted January 24, 2013 Report Share Posted January 24, 2013 Looking to hear encouraging IVIG experiences. Since November we have tried: Augmentin XR, Biaxin, Valtrex, Clindomycin, Rifampin and now Doxycyclomin. It looks like IVIG is the next step. What was your experience with IVIG? If it worked, how long before you saw improvements? What if it didn't work, did you try IVIG again? Pex? Something else? DS 14.5 is in total avoidance mode and doesn't shower or go to school in the almost 3 weeks. When he is up (3pm to 2am) then he is nice and eats, talks. Thanks in advance, T.Anna Link to comment Share on other sites More sharing options...
momoftwinsplus1 Posted January 24, 2013 Report Share Posted January 24, 2013 IVIG was the best thing we ever did. It brought us our little girl back. It took about 8-10 weeks to see good steady improvement. It has been about 10 months now and she continues to improve. Link to comment Share on other sites More sharing options...
bigmighty Posted January 24, 2013 Report Share Posted January 24, 2013 Did you already try a steroid taper? DS did two IVIGs, but got strep immediately after the 2nd. After another nine months of severe OCD, went to Dr. B. He did Aug 875 with a 21 day steroid taper. Seven weeks after the steroid taper, DS went into remission. If I had it all to do over again, I'd do a steroid taper and wait six to eight weeks before deciding whether to pursue IVIG. Link to comment Share on other sites More sharing options...
LNN Posted January 24, 2013 Report Share Posted January 24, 2013 IVIG was not a good experience for my son. However, he had undiagnosed lyme. So I'd just make sure you've tested for chronic infections beyond strep beforehand. Link to comment Share on other sites More sharing options...
HT's Mom Posted January 24, 2013 Report Share Posted January 24, 2013 Yes, Yes, Yes. If you don't have a lyme situation (per LLM's experience), do IVIG. I wish I'd known to do it way back when pandas started for our ds, now 17. IVIG #1 brought him way back, did #2 six months later because there was still some anxiety/intrusive thoughts (tics were minimal by then). Today he is 90%. Both times were dramatic improvements. The procedure itself is no big deal to be worried about - other than expense of course. Like many, ds did have severe vomiting afterward, but this stopped within 24 hours. All in all, I would highly recommend after all you have tried. Link to comment Share on other sites More sharing options...
norcalmom Posted January 25, 2013 Report Share Posted January 25, 2013 yes - it was fabulous. He's not all better - but he has never reurned to that pre-IVIG state. Exacerbations are shorter (and pretty fare and few between now). We did two - 9 months apart, when I was his "baseline sliding backwards again. He's stable, but not 100%, Highly functional, no one would know he has anything wrong (outside this house anyway). We found chronic mycoP, and have been treating for it for several months, and it takes time. I'd like to get another IVIG sometime soon - it not only made pandas stuff better, his immune health improved and we saw very little in way of illness in couple months following it. Link to comment Share on other sites More sharing options...
pandakid11 Posted January 25, 2013 Report Share Posted January 25, 2013 Hi Be careful. Side effects are severe vomiting for days and possibly worse pandas once it wears off. Just an FYI. Looking to hear encouraging IVIG experiences. Since November we have tried: Augmentin XR, Biaxin, Valtrex, Clindomycin, Rifampin and now Doxycyclomin. It looks like IVIG is the next step. What was your experience with IVIG? If it worked, how long before you saw improvements? What if it didn't work, did you try IVIG again? Pex? Something else? DS 14.5 is in total avoidance mode and doesn't shower or go to school in the almost 3 weeks. When he is up (3pm to 2am) then he is nice and eats, talks. Thanks in advance, T.Anna Link to comment Share on other sites More sharing options...
nicklemama Posted January 25, 2013 Report Share Posted January 25, 2013 We are very happy with IVIG. DS has had two. First one in May 2011. He improved in ways we hadn't even realized we're amiss. Got pneumonia this past Nov 2012. It really set him back and we saw behaviors we hadn't seen in a long time so he IVIG #2 in late Nov 2012. It takes time to see improvement. Weeks, if not months. We started seeing improvements from this IVIG a few weeks ago. He's doing really well right now. I am going to be more proactive this time around and get him on a steroid burst or taper after any illness where he starts flaring. I have an appt for him to see a new local doctor I think is going to help us. We cannot afford IVIG each year. That's our unfortunate reality. Link to comment Share on other sites More sharing options...
Hayley Posted January 29, 2013 Report Share Posted January 29, 2013 We are 7.5 weeks post HD IVIG and have seen tremendous improvement. I wish we had done it sooner! She had started on augmentin and we did see results with that. I would say it got her about to 75-80% after a month or so and that lasted for maybe three weeks, but then she got a virus and regressed in her symptoms. We did the IVIG and it has been remarkable. She came through the treatment very well and we started to see improvement rather quickly. I would say now my dd is about 95% back to normal and what is left is as much habit stuff that she's stuck in than full PANDAS symptoms. I would (and will) do it again in a heartbeat! Link to comment Share on other sites More sharing options...
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