May be starting IVIG in December 2011...nervous now!

Brandi - posted on 09/15/2011 ( 1 mom has responded )




Well...Preston was started on daily Bactrim at the beginning of September. He gets another Humoral Immunity Panel and set of Immunoglobulins drawn mid-December. If his IgG has dropped again he will be started on IVIG. I have known for more than 2 years that it might come to this and I tried to learn everything I could about it. I guess all of the watching and waiting and not doing anything made me think it would never happen so I didn't worry. Now I am worried. I am a nurse but I am a mother too. I have always practiced taking care of my patients like they were my child but now this is my child. I thought he would go to March with the Bactrim trial but they say they have waited long enough. His immunologist didn't have much faith that his IgG would be cooperating based on the last two and a half years of data. I am glad they are finally doing something but I am scared for my son too. It's real now; this might really happen and very soon. We have a great pediatrician. I work alongside her; she is a great friend. She has offered to do his infusions at our hospital and personally monitor him; saving us a 3 hour drive to Texas Children's every month. I would drive to the ends of the earth every week for every day if that's what it took. This is my baby, my youngest, and I am scared to death for him now.


Maygan - posted on 10/21/2011




i know how u feel my son has nemo but he gets his immunoglobulin with sub q he was the first to get it that way.i only know about your son from what u wrote but it might be something for him.And i do it at home so no trip to the hospital. If u would like more info about it let me know i would love to help.

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