IVIG OMG!!

Today is Infusion Day for Lola. This is our monthly ritual. So as I was laying in bed this morning, it dawned on me that this month marks the 5th year of her receiving monthly IVIG infusions!! While she has been getting Solu-medrol and Methotrexate infusions since day one of her diagnosis and weekly ones for a couple of years at that, I cant believe that it has been a whole 5 years that we have been doing the IVIG dance. That is roughly 60 infusions! With these bad boys costing around $22,000.00 each, that's alot of dinero in 5 years! No wonder my insurance company gives me hell when trying to get a prior authorization for these treatments. Many people ask me what is IVIG, so here is a little tidbit of information.
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG is a blood derived product that has been used in the treatment of children with JDM. IVIG consists of purified antibodies which are proteins that the body's immune system uses to fight infection. The mechanism of action is unclear, but IVIG has been shown to slow down the inflammatory process. Side effects like headache, fever, and vomiting can occur, but they are usually prevented by pretreating with Tylenol, Benadryl, and sometimes the addition of a steroid.

I have been very fortunate that my dad insists on taking her to her infusions. She feels comfortable and at ease with him and he wants to be there for her. And he is retired so he has nothing better to do!! LOL! When we first started doing these all day long infusions, it was a bit easier, she had a port then. All they had to do was access the port and viola, it was going. Then that port was no good and we had to get another port and then that one lasted a whole 2 weeks. So then we were told that she could no longer have another port as they believed her body rejected them and that was what was causing the damage to the port tubing, the calcinosis that forms in her body. So then it was IV sticks and that was not fun. It used to take me, my dad and an extra nurse to hold her down, that was even after sedating her with some Phenergan. Allorah gave them 2 chances to stick her and if they couldn't get it on the 2nd try, we left, that was the agreement. She runs a hard bargain, that girl. Well, she became such a hard stick that I finally starting asking for the anesthesiologist to come in. We have been so blessed that they have been so willing to come in and start her IV each time we have gone in, so a big thank you to the anesthesiologists at GCRMC, especially Steve. You all have made this a lot less stressful for Lola and for us. Allorah now just goes in and weighs herself and gets settled in and sits by herself while they start her IV and get it going. No complaints or tears anymore. She is truly amazing. I hope and pray that one day there wont be anymore infusions, any more medications and no more doctors. That she will be cured and in remission and this will all be in the past.