Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 Hi everyone, Liz's email made me think about posting an update here about my son. I know that sometimes it is helpful to read archives and see the different experiences that everyone has had. Caelan re-started IVIG in the hospital in October 2010. He had several rounds and multiple side effects culminating in aseptic meningitis. We switched to Hizentra last January (nearly exactly a year ago to this day!). At first it was rough because he had several traumatic experiences in the hospital and was scared that he was going to feel awful on the Hizentra. It took many months of no side effects and experimenting to get him comfortable with the sub-q, but he is doing really well with it now. He doesn't get upset at all and we've settled into a routine. Best of all, he has been infection free, antibiotic free, is off of all of his asthma meds for the first time in his life (was on high dose Advair) and is free of the chronic daily mystery hives that he was plagued with before. He has put on 20 pounds and is finally starting to grow in height again. Last year he missed 42 days of school and so far this year it has only been 7 and the rest of the family was sick as well. Last year the vast majority of the 42 days was before Hizentra. We just switched insurance and there was a concern about him being approved as this new company isn't exactly easy to deal with. The thought of him losing this treatment was very upsetting to all of us, but we are thankful that we have received approval and will be proceeding as usual with his treatment. It has been a long road to get here, but when you find the right treatment it can be nothing short of a miracle in terms of health and quality of life. Hope everyone is doing well this winter! Mom to Caelan (CVID, asthma, severe food allergies, on Hizentra) Quote Link to comment Share on other sites More sharing options...
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