Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 , yes both and are on Miralax, and it has really helped their constipation issues. Prior to starting it a year ago, we had tried so many different motility meds with little success or too many side effects. As for the immuno , this man really put us through a very rough time. When first saw him at around 2 and a half yo he wanted to start SCIG. It was a few weeks b4 Christmas, so he suggested we wait until Christmas was over and done with and then start. Dh and I had no sooner mentally prepared ourselves for this, when we received a call from the immuno to say he had changed his mind and wanted to wait a little longer while keeping a close eye on . So six months later he decided IVIG should be started, and as you know, again changed his mind at the very last minute, so last minute I had the infusion clinic calling me asking me where was as they had his IVIG ordered and waiting....... The hardest thing of all this has been how much this one immuno has influenced s care. I thought seeing the head of the immuno dept at our only childrens hospital would mean would get the best of the best, but it definitely didnt work out that way for us and the two ped immunos we took to in the following year no sooner were told he had been seen by this one immunologist than they were contacting him asking for advice and all was lost. What we need to do is take to someone who has no connection to this one immuno but that is just not going to happen unless we move to the US (or HE does! lol) Somehow it is comforting to hear our experience (re ivig/no ivig) is not an isolated one, but I truly would not wish the rollercoaster ride on anyone. Take care, Quote Link to comment Share on other sites More sharing options...
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