As I've written about here, the dude began infusion therapy for his immune deficiency this month. All was going well for the first two weeks, except for some hyperactivity. No big deal; I got this. Then came dose #3. After his infusion last Monday, Jack was a little drowsy, took a nice long nap, and woke up...high. He was yelling like a crazy person and running in circles laughing. It was kind of funny, but definitely worse than the week before. He seemed to be back to normal by the next morning. Thursday morning, he intentionally broke 3 toys within less than two hours. My child has purposefully broken a toy maybe once (?) in his entire life. Things just got worse from there--he wasn't just hyper, he was aggressive. He yelled at me and the hubs, he frequently swung at us; he even tried to push me down when I wouldn't let him have his way. His behavior was back to normal Friday and Saturday morning.
Practicing infusions on his therapy buddies, Iggy & ZeeZee
Saturday afternoon, we left the dude with my mom for an adults-only date night. His behavior while we were gone, as well as all day Sunday and some of Monday, was the stuff toddler-mom nightmares are made of. More screaming, aggression, throwing punches, and just being mean. I called his immunologist--she'd never heard of such a side effect. I talked to several experienced moms in online support groups who said their kids had reacted similarly to this particular drug, although no such effect is listed in the drug insert (or online). We needed a plan.
I decided to take him to the new indoor play area at the mall and meet up with a mom-friend, thereby accomplishing two goals: keeping the dude active and getting a little adult conversation. The morning could not have gone any better, I tell ya! He played so well, alone and with other kids. He shared, he used his manners--I was such a proud momma! We bought new shoes (such a good sale!!), had a mother-son lunch, and even got cookies as a special treat.
Enjoying a fruit cup while I shopped...
Then we went home, and all hell broke loose. It started with a simple request to check his temperature, and well...
My sweet baby had a complete and utter meltdown. He yelled, he clenched his fists, he threw anything he could lift over his head across the room. He screamed at the top of his lungs until his face was purple. And then this momma called the doctor and had a little "Come to Jesus" meeting with the nurse, and then a very similar meeting with the pharmacist. We cancelled the next shipment and decided to give him a few weeks off before deciding if we will resume treatment with an alternative drug. And then we both sat on the floor and cried. No more Hizentra for this boy.
This post was truly difficult to write. It was hard to relive the meltdowns that broke my mommy heart. Watching your child lose control of his behavior to such an extent is awful; the pitiful, confused look in his eyes tore me to pieces. He didn't understand what was happening, and I felt useless because I had no answers; no solutions. It also gave me a new understanding, a new empathy, for parents and caregivers of children who struggle with these types of meltdowns daily. I chose to post our story because this information was not available to us. Had we known this was a potential side effect of that drug, we likely would have chosen a different one.