Last Friday Elias received his latest IVIG infusion. His dosing was slightly increased this time. Since then he has been sleeping more, always tired, cranky, irritable and lethargic. Sometimes headaches and nausea can be side effects which obviously Elias can not tell us about. Also through the week we were seeing various other issues pop up and go away; diarrhea, low fever, mild changes in secretions all of which would go away as quickly as they appeared then return. Elias is also cutting a few teeth as well, including a molar. All of these things could have been related to several things. IVIG reaction, Blood infection, C-diff flare up, something viral or just plain teething pain. Everything but the sleeping to us is old hat. We are use to it, but his lethargic days and extra naps (sometimes 4-6 hours) had us concerned. We called yesterday afternoon to the FA clinic when Elias had slept until 10:45a and was trying to nap at 12:30p. That was the 3rd day in a week he had slept past 10a. Elias never does that, especially when it is sunny outside. After 3 phone conversations and a ton of questions it was decided that Elias needed to be seen first thing in the morning.
just about every lab known to man was done along with several cultures. The only thing back so far is the CBC which did show that his Hemoglobin has dropped some. Ironically, seeing how Elias CBC #’s have been so great they decided no to do one on Friday like they normally do. So with nothing to compare it to recently it is difficult to say if this drop happened this week or not. So we have to draw another CBC tomorrow so they see which direction particularly the hemoglobin is headed. This would explain the fatigue and sleeping as the hemoglobin is connected to the red blood cells which carry oxygen through the blood. Elias’ are usually at about 11.7 today they were around 7 so nothing big just concerning. Why this happened they are hoping the labs will show. Viruses and infections can make thins # drop as can the IVIG in which case we would pre-medicate with a different medicine. He has never experienced this before and we have been doing IVIG since October every 2 weeks. We will see. They did admit that they are concerned but were not going to admit him unless the other labs show something conclusive. We will follow up early next week as well to re-check CBC and go from there. It is really up in the air at this point but they do need to figure out why the sudden drop in hemoglobin and that is the focus for now. It is times like these that remind us of why we brought Elias here and our decision to move here. No pediatrician would be able to diagnosis and problem solve this as quickly. Thank you again to all of you out there that helped make this move possible. We know it was nearly a year ago, but still we are forever grateful and there have been several times in this past year we have seen benefits for Elias in his care. Here is to praying for a safe and uneventful weekend. We hope yours is as restful and full of fun. We will keep you posted when we get test results. The BMT on call is suppose to contact us this weekend if there is anything that needs to be addressed.