Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Hi, ! It was great meeting you yesterday. I did make it home just in time to interview a new tutor for our kiddo and we hired her -- yea! Kim Duff showed a wonderful video (with Conner, Kris McFalls's son) of subcutaneous therapy. I am wondering if NuFactor might be able to send you a copy given that you needed to attend a different talk when that one was in progress. When your daughter is stronger, and ready psychologically, she might benefit from seeing a " peer " (and prince of a guy) do SCIG on himself at home. Also, you and your husband might like to see how it can be done at home. She would not be able to play water polo at the same time but she could at least be in a comfortable setting. = ) After Dr. McCurdy's talk, I started thinking about how autoimmune disease and immune disorders (particularly infections) sometimes mimic eachother in terms of symptoms. It is just so hard to sort things out and my heart goes out to you. As we discussed, it will take time for your daughter to heal from such a long history of insults but rest assured that you have some of the most competent docs in the country now. Still, it is up to the parents to be on top of everything -- keep asking questions, monitoring her levels, and consider logging her pain/complaints. I keep a pain log for my daughter and next to " knee pain " , for example, I write the level of pain on a scale of 1 to 5 (5 being the worst). It is amazing to see that, over the course of one year of having her IgG > 800, that she has far less pain and sleeps at night. She is so much better now but it took a lot of time -- and we still have our quirky troublesome areas. Take care, mom CVIDer Quote Link to comment Share on other sites More sharing options...
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