Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 I just read you post and was moved with sadness, and joy at the fact you will pusrsue an option that is right for your daughter.. My son will be starting IVIG in about a week, and I also asked about sub Q, and the immun, which was recommended by the IDF said NO........ I asked why and he gave me the BLA BLA speech.. I asked if we could do it at home . again NO NO ...when I questiond the nurses at the clinic the same sub Q home based question.. they repeated those same words.. it is cruel and barbaric..... what is going on ??? we will be doing the treatments in the hospital, but only till my pedi can train someone to do the sub Q.kathleen mom to conan good luck... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 re frustrated to tears I just read you post and was moved with sadness, and joy at the fact you will pusrsue an option that is right for your daughter.. My son will be starting IVIG in about a week, and I also asked about sub Q, and the immun, which was recommended by the IDF said NO........ I asked why and he gave me the BLA BLA speech.. I asked if we could do it at home . again NO NO ...when I questiond the nurses at the clinic the same sub Q home based question.. they repeated those same words.. it is cruel and barbaric..... what is going on ??? we will be doing the treatments in the hospital, but only till my pedi can train someone to do the sub Q.kathleen mom to conan good luck... This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 from Dale, Mom to Katy, CVID, age 20 Sub -Q is very new here in the states, but has been used successfully in Europe and other parts of the world for many years. The ladies that I've met who have used it for several years are convinced it's the best thing ever invented! But, they are quick to point out that it's a bit of nuisance to get started. If you are planning on starting it -- I believe the protocol is to start it soon after your last infusion, so that the levels don't fall too far in the mean time. The only people that I've heard of doing Sub-Q administration in the U.S. is a company called " Accredo " . I think they are nationwide, but are based in Texas. If you search for them through " Google " you can find whether or not they have a branch near you. For the one family that I know that used them, they were excellent in educating the physician, ordering the supplies and training. I'm sure they would work with your pediatrician. I can't imagine why they would call the procedure itself barbaric. Many diabetics use it for insulin infusion. They may be thinking of the intra-muscular injection which IS BARBARIC and terrible and does not provide enough gamma per shot to do much good. Sorry you've had to encounter this rudeness and mis-information. But, glad that this group has given you the strength to stand your ground. One thing that is very reassuring about Sub-Q. If it doesn't work -- there's no permanent damage -- you can always go back to IVIG. 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.