SEAMom Posted October 14, 2015 Report Share Posted October 14, 2015 My DS15 had his first IVIG 3.5 weeks ago. We saw no results except a terrible headache for 4 days. His second one is scheduled for tomorrow. I feel that in the last 2 weeks he has actually regressed back to the early months of his diagnosis - his eyes are really dilated again. His chorea movements are coming back. The suicidal talk remerged and I am having to sit with him to sleep again! We fought so hard to get IVIG covered by insurance but it was supposed to help!! Not make things worse!! Has anyone experienced a regression first after IVIG and then success?? We had such unbelievable success with a high dose prednisone 50mg taper that my DS's immunologist felt very positive about doing IVIG. My son's IVIG dosage is 1mg/1kg over one day. I have questioned our doctor about this dose but he has assured me multiple times that a higher dose would not be more helpful but just make my DS's headache/side effects worse. I would love to hear your experiences. I really need to hear some success stories. Thanks! Link to comment Share on other sites More sharing options...
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