IVIG

My lone post for the month of March touched lightly on our IVIG journey. I have to say that so far it's going very well. Brice has completed 4 infusions and Pierce has completed 1. Brice presented with an ear infection at this 1st infusion --- He also got sick about a week after infusion #3 (double ear infection and red, swollen throat - Rx'd a z-pak) --- IVIG #1 = migraine 24 hrs post; IVIG #2-4 = headache 48hrs post. Pierce's first infusion went a bit more smoothly than Brice's but it lasted much longer. And poor Pierce had a migraine for an entire day, starting a little less than 24hrs after. He was miserable. We will see how they continue to do - they may need a small dose of steroids at the 24hr-post window or they may need to switch to a different brand. They are presently on G@mmagard.

Infusion day has gotten REALLY tough with Brice. He knows what's going to happen... he knows he's getting an IV... and he knows he doesn't like it. His first IV went okay - the second was a disaster. By the third, they knew what to expect so they brought in the anesthesia team to do his IV. They were prepped to take him down to a procedure room to give him some nitrous, do his IV and bring him back to the floor. Thankfully, they didn't have to... but the kid has a reputation now. For infusion #4, in walked an anesthesiologist to do his IV. He isn't allowed to eat for at least an hour before in case they have to give him any nitrous.

Our immunologist called in an Rx of Syner@ for us. Our first time using them will be this coming Wednesday. It's basically a lidocaine/tetracaine patch that we will put on as we are leaving the house. It needs about 45 minutes to take full effect. Fingers crossed this helps reduce some, if not all, of the pain they experience during the IV process.

Last month, I spoke to the immunologist [that we see each month for IVIG] about switching to sub-q. I knew that we would have to wait because it was Pierce's first infusion but I wanted to know more about and what his thoughts were regarding it. He thinks it's a very reasonable option for both of the boys. He prefers to do in-hospital infusions at first just to see their reaction to the immunoglobulin and to have that one-on-one time with the parents. He also thinks that we will be able to find a suitable area for the sub-q infusions somewhere in the boys' flank area. As much as I don't want to me the "mean guy" having to stick my kids, I will gladly welcome it because it's a teeny needle and we get to do it in the comfort of our own home. Basically, we insert a thin needle, under the skin/into fatty tissue (sub-cutaneous), tape it down and begin the infusion process. It will take about 1.5 hours and we will do it once a week. The pump is similar to an insulin pump but a little bit larger. Home health would come in and teach us what to do, etc. The side effects are much less with sub-q because they are receiving a smaller amount of it each week. The purpose of any immunoglobulin infusion is to administer enough into the body to last for "x" amount of time. In the hospital, they are given a 4 week dose... at home, they would be given a 1 week dose.... so we may be able to completely eliminate the migraines/headaches! I plan on bringing it up again after our infusion this coming Wednesday. I would love to be able to start this route in June. The other good thing is that if sub-q doesn't work out, we can switch back to in-hospital infusions without it messing anything up! I would say expect an update next week but I make no promises because my life has the ability to go from very calm to insane in a matter of seconds... but for now, here are some pictures chronicling our infusions.

IVIG #1

IVIG #2

IVIG #3

IVIG #4 / IVIG #1