One of those posts that is mostly for my own process / research.
Moses had an appointment with an infectious disease specialist (IDS) today. They are considering putting him on a different oral antibiotic: Linezolid. It’s a ridiculously expensive drug ($6,000 for a six week course for our 7 year old).
Moses’ doctor said that if he goes on it, he’ll need blood work every week to monitor his white blood cell count and his platelet levels because one of the potential side effects is that it can cause bone marrow suppression and low platelet counts.
It feels like we are stuck between a rock and a hard place. When Moses was discharged on Friday, the abscesses were smaller, but not gone. Moses has been out of the hospital for five days and has been doing well overall, but he has still been complaining of (minor) stomach pain from time to time. Tonight, he cried out again and I thought we were going to need to bring him back to the ER. His pain only stopped after he vomited. Who knows – maybe it was something he ate??? Thankfully, he’s sleeping now.
The IDS is suggesting Linezolid because she wants complete resolution of the intra-abdominal abscesses. As I mentioned earlier, typically, these abscesses are dealt with by surgery, but because of the number of abscesses, the surgeon was reluctant to drain them because it would be a complicated surgery through the abdomen and time to heal from it.From what I’ve read (see below), there are relatively few side effects if only given for 2 weeks. In addition, I know of at least 3 individuals with my son’s diagnosis who have been on Linezolid with no obvious side effects.
We have another appointment with both his IDS and our surgeon (a different one than the one that was caring for him during his 12 weeks in the hospital), so we’ll have a second opinion about surgical options. The IDS was saying today that hopefully the Linezolid will decrease the number of abscesses, such that a more minor surgery through the rectum may be possible.