Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Thanks, Dale! It never occurred to me that her severe reactions could be because she is IgA deficient. I'd been working off the premise that infusion rate SOLELY controlled the infusion reactions. I'm pretty sure we are using gammaguard, but I'll double check. I've tried to block out infusions and all those details for the last four months. Is SubQ a port?? Pam mom to 4 Rebekah with CVID? Hi from Dale from Dale, Mom to Katy, CVID, age 18 Pam -- several thoughts about the post infusion headaches. #1 can you ask the doctor to try a different brand -- sometimes our kids show reactions that are " brand " specific. That doesn't necessarily mean that there are good brands and bad brands -- in fact, what works well for one kid may send another into a nasty reaction. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Oh, I'm so glad for Kody! Are you feeling relieved at all? Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Can you guys give me an idea of what kinds of rates your kids tolerate on infusions? We do the infusions at a cancer center and I'm not convinced that they see a tremendous number of PID kids. I think they do a lot of kids and adults who are immune deficient secondary to cancer. I might be wrong, but they didn't seem long on experience (but very nice and kind to our family!) Pam Re: Hi from Dale Pam, My daughter has had severe headaches for over a year now and they have had lots of problems with her infusions. They have had to run them at a slower rate. Her sister seems to alright with them fine,but if they get hers going to fast she has a lot more pain with hers. After it is over she has a lot of joint pain and headaches. She also has what they call flashing in her arm where her port is. I give her childrens motrin and it seems to help some. thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 from Dale, Mom to Katy, CVID, age 18 Heidi, serum level means the level found in the blood. But, yes, that means her total IgG is 416. If you add up the 4 subclasses you probably won't get 416 because there are a lot more subclasses that have not been explored yet. That level is considered to be borderline for receiving IVIG which is why the doctors are looking at the clinical picture and saying " I don't think she needs IVIG right now. " They did the same thing with my daughter. Even though she was sick all the time with chronic fatigue and muscle aches and upset stomach -- she didn't have any " infections " that warranted starting IVIG. 6 months later, she did. So they started IVIG and she's been on it for 5 years, (I think). But, again I repeat myself -- if she's starting to build antibodies -- you may be seeing the start of something good. Hope that helps, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Yea, Katy! I'm so glad to see that she's taking charge of her own medical issues. I know that's one of my biggest concerns, albeit a long-term one since Autumn's so young. Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (16 months) Quote Link to comment Share on other sites More sharing options...
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