Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Ok. I am so frustrated right now. Maybe ya'll have some answers, or know where I can get them. My son has Sel. IgG Def. We do SubQ weekly. Right after we started IVIG in Feb, he developed migraines. They tend to come and go with weather changes. Exercise makes them better, but as soon as he stops, they come back. This one has been waxing and waning for 5 days. He was put on Nexxium for a while and developed horrible side effects, so was taken off. 3 Months later he was put on Topamax, developed horrible side effects and we took him off last night. He is considered healthy because he is not hospitalized. Only 2 times in his life. His quality of life is horrible! How can this be considered healthy when he is missing 2 days a week on avearge because of migraines/ side effects from med? I am a horrible mom for admitting this, but sometimes I wish he had a more recognizable illness, one that people are more familiar with, so we could have drs say, " We need to jump on this before it gets out of control. Yes, his quality of life is non-exisistant and I want to make it right. " His immuno is awesome and doing his best to get the specialists on track, but it is hard. None of what he is going through is life threatning at this point(for which I am thankful and realize how blessed we truely are.)But who wants a life that is filled with constant pain and helplessness? My questions are these: 1)Do your children ever respond to long term meds with the worst possible side effects? ( always does!) 2) How do you get your specialists to listen to you when you tell them what is going on? Right now it is taking our immuno calling the drs and speaking to them personally. Thier staff do not relay the direness of a situation. 3)How do you personally deal with the daily frustrations when your child is not feeling well and no one can figure out why? Sorry this is so long, but I needed to ask someone who has been there a little longer than us. Check out his site to see what I am talking about when I say " side effects " it's not just weight gain... www.caringbridge.org/visit/alexsmith Quote Link to comment Share on other sites More sharing options...
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