IVIG the miracle cure?

At everyone’s urging and our doctor’s blessing, we undertook 3 rounds of IVIG.

Three very difficult infusions over the course of several months. One trip to the hospital with a migraine so bad the vomiting wouldn’t stop and a son crying in pain and wondering why he had to continue to endure these awful, awful events in his life.

The first infusion was exciting, anticipation was at its highest, and this was what we hoped for when we battled our insurance to cover the treatments for our son.  The box of supplies arrived on the doorstep at the house, the product was placed safely in the fridge for preservation and safety. Enough for 2g/kg for my son. We loaded him on Gatorade and got ready to see a significant change from the two-day infusion. Low and slow was sure to win the race.

The day arrived, the nurse came early, and the stick was as troubling but not impossible. The infusion got started. We loaded up on Advil and Benedryl and watched the drip, drip, drip. Adding the fluid bolus, every 6 hours we followed the prevention protocol. Later adding a steroid taper to ensure no headache or migraine occurred. We had heard horror stories. We tried to be proactive.

The infusion was done. We made it through. It wasn’t easy, and it wasn’t smooth but he survived. Unfortunately, no positive results seemed to be initially apparent but we knew it could take time, so we packed away the trash, and scheduled the next infusion.

Still no real changes but one month later, infusion 2. Same anticipation, the same routine, loading fluids ahead of time and being ready, but the nurse was not able to stick him. That nurse left. We decided to stop for the day and give him a break. The next day another nurse came. Success!! but a little more than halfway through, that infusion became too much, he became overwhelmed and we decided it was safer to stop. We calculated he had been given 1.5g/kg and so were not overly concerned about the low dose side effects we were all too familiar with. That night my husband raced to the ER with a very sick, very lethargic child. The ER took into account his situation and administered another fluid bolus with additional magnesium. That seemed to do the trick. My husband loudly and clearly declined the offer of a spinal tap. Instinctively knowing the ER was not the place to get that done.

Infusion 3, and while it went ahead and we did get most of the fluid and IG product in him, it became apparent that this was not going to continue. We were not seeing results and the steroid taper on the last attempt left him with significant body pains and just a feeling of irritation, anger, and frustration. We stopped and decided that, while it was worth the attempt, the answer wasn’t to be found in IVIG.