Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 from Dale, Mom to Katy, 17, CVID The results for IVIG show remarkable improvement in the lungs and gut -- just not as much for the sinus cavity. I'm surprised you got such a quick response, but because she's so young -- I'm sure it doesn't take as long to recover. My daughter was 13 before they started IVIG and it took a year before we were absolutely sure that we were seeing amazing things. That's really incredible -- be sure and right a thank you note to your insurance company rep (even include pictures of Reagon) the insurance company needs to know that what they are paying for is having a drastically wonderful result!!! It's great to hear good news here! Katy was supposed to have IVIG at 2:00 and boy does she need it. But, I just got a safety recall notification for her lot number -- so, I'm on the phone to the pharmacy and nursing staff to try to get something worked out. Hope they can send another bottle out -- but guess we'll have to plan to reschedule. She's actually disappointed -- you know the stuff works when you see your kid disappointed that she's not going to get her IV! Which brings up the question -- are ALL of you who are taking IVIG enrolled in the Patient Notification System -- you need to be! There has only been safety recalls -- precautionary for the past 5 or 6 years -- BUT you need to know about them in case there's ever anything BIG. Enroll in Patient Notification System: 1-888-873-2838. Tell them to update you by e-mail AND by snail mail so that you'll be sure and get the notification. WHY: today it has prevented Katy from getting an IVIG product that isn't totally dissolved properly -- I doubt it would cause a problem -- but you never know. It helps ease the mind if/when something bad does happen, you can go back and check your lot numbers and make sure you are not affected -- or get medical help immediately if you were. YOU MUST be writing down each lot number that your child receives. Don't depend on the hospital to keep the records for you. Keep them yourselves! Okay -- enough preaching. I wish that phone would ring.... In His service, Dale 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.