Guest guest Posted November 25, 2006 Report Share Posted November 25, 2006 My son will have his first infusion of Flebogamma on Monday. I have gone back and read over all of the old posts of flebogamma, and it scared me even more! I am so worried that the sorbitol will have bad effects on my son. Are renal problems pretty rare? I am worried since my son is nonverbal that I wont realize he is getting a bad headache afterwards. He has been very sick recently, and has a metabolic disorder that makes it very dangerous for him to throw- up or to not eat, and I worry this will happen. He is also getting a double dose(about 20), and I hope that this is not the Hi Carie, My son receives Flebogamma and it is the only IG replacement he has ever had. He did have side effects the first three infusions, but that was because the infusions were run WAY too fast!! The rate was at 130 the very first time...and now after two years, his highest rate is 72. If I could go back in time, I would insist that the rate be SLOW. Also, you will know if he is having the severe headache. My son just sat in my bed with me and didn't move. He did have vomiting, too, but I made sure to leave the Doctor's office with a RX for suppositories (to prevent vomiting)...you may consider that. They did help. Still to this day, on the day of infusion, he is not hungry. Even when he is starving for breakfast, his appetite slows down once they start the IVIG. It is normal again the next day. Before Monday, be sure he is very well hydrated. This helps with everything from finding a vein to easing the side effects. I still make Bri start drinking tons of water about three days before the infusion and three days after. Gatorade is good, too--Pedialite if he will drink it. Also, I give an Advil just as we are finishing the IVIG. I find it easier to keep on top of the headache. These days, that is the only Advil he needs, he doesn't get any headaches after that point. If you have any questions...please put my name in the subject line. I only receive digest so that way I will make sure to see it. We have had no kidney issues or any other with the Flebogamma. Sandi, Mom to , age 13...CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi, My daughter (6 yrs old now, diagnosed with PID 2,5 years ago) infused with Flebogamma several times (min. 4 times a year). Actually we do not have too many choices here and have to use whatever we can find, but still prefer Flebogamma to Octagam. We decided to stop all suppresive medication after all IVIG sessions, with her immunologist and Flebogamma seems to have lesser sideeffects than Octaganm on her. (Headache, nausiness, sometimes throwing up) Side effects appear after 48 hours of the infusion. No anaphylactic effects observed. Good luck and God bless Murat Dad to 6 yr old girl with PID , IgG def. 2008/11/23 <BBsmart2@...> > Has anyone ever heard of or tried Flebogamma? Brittany is going to be > infused in intensive care with this product where she can be watched > carefully in > case she goes anaphylactic. > I never heard of this product before now. I know it's new. > > Janet, mom to Brittany age 18, CVID, Uriticaria & Angioedema, Vitamin D > Def, > Secondary Hyperparathyroidism > > **************Check out smokin' hot deals on laptops, desktops and more > from > Dell. Shop Deals > ( > http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol?redir=http://a\ d.doubleclick.net/clk;209513277;31396581;l > ) > > Quote Link to comment Share on other sites More sharing options...
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