Jaal Posted May 31, 2013 Report Share Posted May 31, 2013 Hi MY DS7 had his 1st IVIG treatment 3 1/2 weeks ago (after being on Augmentin for 8 months). He was actually pretty good for the 1st 2 weeks (other than a little bit of rage). Then for the last week and a half, he has been worst then he has been in quite a while...he's had some tics that he hasnt had in a long time, and he just seems uncomfortable in his skin (I call it firey). I read that a lot of people who had IVIG experienced worsening for a couple weeks then a gradual improvement. My question for those who have had IVIG is was this worsening immediate, or did the worsening ever begin a couple weeks later, and then start gradually improving. Any insight would be greatly appreciated! I'm obviously getting very nervous. Thank you!!! Link to comment Share on other sites More sharing options...
nicklemama Posted May 31, 2013 Report Share Posted May 31, 2013 It's very see saw. In our two experiences, it was three months out before we saw major improvement and more stability. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 31, 2013 Report Share Posted May 31, 2013 Each kiddo is different. Try to be patient and give it a little more time. DS6 held his own for the first 2 weeks post IVig. At the end of the 2nd week, we saw a major dip with severe OCD and some other symptoms. This lasted for another couple of weeks, then things gradually atrted to get better. It was not until the 8 week mark that I realized that so many little symptoms had fallen off and that he was really progressing forward well. He continued to do so for the next 8 months, which were wonderful. However, he still would flare when exposed to infection, although the flares because more short lived and less extreme over time...thus the 2nd IVig that we just did a little less than 2 weeks ago on Mon/Tues, 5/20 and 5/21 - to try to get rid of the flares alltogether. Sure enough, it is the end of the 2nd week and bang: here comes the OCD like wildfire. Hang in there - every kiddo manages it differently. It must be very tough on the body and brain to have thso inappropriately behaving antibodies flooded with "good" antibodies..much like an infection. Link to comment Share on other sites More sharing options...
Jaal Posted May 31, 2013 Author Report Share Posted May 31, 2013 Thanks Beeskneesmommy! I will hope we have the same pattern! I was just concerned because I thought the regression occurred right after the IVIG. Thanks again! Link to comment Share on other sites More sharing options...
lulu4 Posted June 3, 2013 Report Share Posted June 3, 2013 DD12 had ivig 5 weeks ago, and we are seeing some small improvements, but nothing big, and some regression in some behaviors. Anxiety is not improved. It is a mixed bag. I greatly appreciated hearing others' experiences too, so I knew we couldn't expect anything concrete regarding behaviors and timing. Beeskneesmommy, you helped me before our ivig, and I have thought of you often in the last 5 weeks, hoping that your little guy's second procedure went well. Here I am still hoping that healing comes for all of our kids! Link to comment Share on other sites More sharing options...
T_Anna Posted June 3, 2013 Report Share Posted June 3, 2013 According to Dr. Schulman, she said she sees improvements start at 10 weeks post IVIG. Unfortunately, that was not our experience. DS15 had two IVIGS, 2/14 & 3/14 and any slight improvement was after the IVIG and ws minimal at best. We discovered he still has an issue with Myco (and at the time alos Coxsackie) so that explains our poor results. T.Anna Link to comment Share on other sites More sharing options...
mama2alex Posted June 3, 2013 Report Share Posted June 3, 2013 After our son's first IVIG, we saw nothing for 3 or 4 weeks, then he was worse than ever, with raging and suicidal thoughts/expression. At 7 weeks post IVIG we saw huge improvements. Unfortunately, these only lasted for about 2 1/2 months, until he got a virus and went downhill again. We ultimately found help with Lyme treatment which was started 4 weeks after his second IVIG. I think the IVIG may have helped kick-start the Lyme treatment, but not sure. Link to comment Share on other sites More sharing options...
LaurenK Posted June 3, 2013 Report Share Posted June 3, 2013 T Anna, are you sure it is the mycoplasma? I've had IVIG for PANDAS and it worked very well despite an ongoing myco infection. Link to comment Share on other sites More sharing options...
T_Anna Posted June 3, 2013 Report Share Posted June 3, 2013 He also had Coxsackie at the time and probably Strep titers were still high. In January after being on Biaxin his Myco had gone down. I think we weren't careful enough to make sure we eradicated all the infections in our rush to "fix" DS. We are still trudging through and we have kept all our gains, despite their insignificance on the bigger picture : / Still waiting for Cunnigham tests results too. T. Anna Link to comment Share on other sites More sharing options...
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