Oh my goodness! What did we get ourselves into! This morning Alex woke up all happy, bright-eyed, and just plain great! Sam and I were really excited because he slept "great" through the night too. (He only got up twice, but went right back down.) Sam left for work and I thought it would be a great day to get out of the house and take the kids to the Heard Museum. In the process of getting my make-up on, Alex laid down on the rug in the living room and began rolling around, head to the ground, moaning. I picked him up and tried to comfort him when he all of a sudden started screaming. He was screaming like I have never heard him scream before. I was terrified. All I kept thinking was, "What is going on!!!" I took him upstairs to try and find the phone. A bit panicked, I didn't know who I was suppose to call. His nurse? 911? My Pedi? I started with his nurse, and got no answer. I left a message, but Alex's screaming just kept getting worse. He was thrashing all over me, and I didn't know what to do to help him. I tried Alex's immunologist next, which again led to an answering machine. My last attempt was Alex's pediatrician. I at least was able to speak to his nurse, who let me know that the doctor would call me as soon as he got a free moment from patients. He was the first one to call me back. About 10 minutes later, Alex's pediatrician tried to help calm me down as Alex started to profusely throw up all over me and the bathroom. His pedi told me that I needed to continue to offer fluids as often as possible and monitor his screaming. If it continued, I needed to bring him to the ER. Luckily, after Alex got sick everywhere, his screaming stopped. He fell into a pretty deep sleep. An eerie memory came into my head of the same type of reaction with Nate when he reacted to the Prevnar vaccine. That same thought of, "What have I done!?!" kept beating in my head. I had once again agreed to put something into my child's body that could not be removed and was now causing them an awful reaction! It felt horrible! The next person to call was Alex's nurse, who just told me that I needed to speak to his immunologist. Great, if I could have controlled that, but he didn't call until much later. When he did, he instructed me to increase his Tylenol, alternate it with Motrin, and continue giving him Benadryl. Nice thought for a child who is now sicker than a dog, and will not take any liquid medication by mouth. I was so glad when Shannon reminded me of chewable tablets. I had my mom grab me some on her way over to help with the kids, and they worked great. Alex thought they were candy. It is probably not a good thing for your child to think medicine is candy, but in this situation, it was the best disguise!
Alex ran a fever of up to 102.7 and threw up from 10:30 until around 3:30. As quickly as it came on, the reaction went away just about as fast. By 5:00, all Alex had was a low grade fever. I didn't notice the pattern until today: that was almost the exact times of his infusion the day before. I looked online to try and find some answers to what happened, and was shocked to know that this type of reaction is "common" for some people undergoing IVIG treatments. Why were we not told this. We could have been a little better prepared with supplies in our home, not to mention a little more emotionally prepared. I also found that Benadryl is a key to helping reduce these types of reactions. For Alex, who threw up most of his, that might have been the cause of his reaction. I found that they can administer the Benadryl via the IV before they start the infusion, so I am going to request this for next time. I hope that this will not ever be an issue again!
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