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When did you start to notice a change post IVIG?


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Hi - my son recently had his 4th IVIG and while I should remember how things went after his last 3 rounds (one last year, one this past April, and one this past Aug), I just can't. His IVIG was last Mon and Tues (11/7-11/8) and he doesn't seem to be much better. I asked him today if he felt any better and he said no. I have noticed an uptick in his behaviors in the past couple of days (really struggling to get in/out of the car, having to go back to a spot and start over again when walking somewhere, etc). I did notice a few positive changes - he showered night before last - and that was probably the first time in 2 weeks. He also wrote a very short note to his grandfather (3 or 4 sentences) and he hasn't been able to write anything for weeks (he did start and scribble out a few times on the letter - but it was still a HUGE thing for him and me). I can tell that he is stressed that he isn't feeling better... :-( I know that it hasn't even been a week... I really should keep a journal.

 

Thanks for any thoughts/experiences that you want to share.

 

Sally

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Hi Sally, my ds13 had his second IVIG the same dates as your son. His first IVIG Sept 6 & 7. After the 1st we saw improvements about 2 weeks afterwards. Almost complete disappearance of ALL tics, Less hand washing, joking, more focused on homework, more rational. Then all symptoms that had shown improvement slowly started returning 5 weeks after IVIG. Which I guess this is why our dr said IVIG once a month. The week before his 2nd IVIG he had a virus and not only was all progress lost he was actually worse. Unfortunately, we are yet to see any progress from last weeks IVIG. We've decided to take him out of school for now to hopefully prevent further illnesses and losing any more ground.

 

Hope this helps. Praying you will see more glimmers of hope:)

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I wish I knew.We are 4 weeks post 4th IVIG as well. We have been doing them every 8 weeks. We have seen some improvement. But not as much as I hoped after 4. There is no Lyme or other co-infections. But his OCD is ramped way up now. No tics and mood/tantrums are a bit better. I am almost wondering if he has true OCD. But I know healing takes time, I just feel like we should have seen more by now. I am honestly confused as to what to do next. I will be watching this tread and see what others say. So we have seen some small improvements, but nothing earth shattering here yet, and we head into IVIG #5 in January.....

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