Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 Hi Everyone, I am new to this list, and I would first like to say how thankful I am for finding this place! I have two children receiving IVIG. Conrad, age 7, and Alasdair, age 8. Both have been diagnosed with hypogammaglobulinemia (CVID). Conrad has extremely low IgG and IgM, and Alasdair has Low IgG, asthma, and other autoimmune issues. They were both also diagnosed with autism at age 3 & 4. Alasdair has received IVIG for 6 months now, every 4 weeks. He had some pretty bad side effects after the first infusion, which was done in one day over 7 hrs. Stiff neck (mild aseptic meningitis symptoms), so we now split his dose and give it over two consecutive days, over 5 1/2 hours each day. His symptoms are much more manageable now. Conrad started his therapy 6 weeks ago. Because he is sensitive like his brother, we started him on the same slow protocol that his brother is on. Within 12 hours after the second day, he was in the hospital with aseptic meningitis. This was terrifying. His doctor now has us on a schedule where he gets half of his dose over 6 hours with IV fluids, and the other half 14 days later. So he has had two more now on the two week schedule and is doing very well with it. He is not a good drinker, so he will get IV fluids every time from now on. We were fortunate to get a wonderful nurse through a home health care agency. She is the only one to work with the kids and they love her. I look forward to being a part of this group! There is only one other parent that I know in this area to talk to about this, and as you all know, it can be very stressful! King Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.