I’m going to make this quick because my brain is completely fried and the rest of me is equally as exhausted.
Gavin’s labs came back today and some of the results appear to be very concerning. The reason I say appear to be concerning is because I’m not a doctor and I have only a basic understanding of how to read this.
There are several areas that are concerning to me. Gavin’s IgG level is 358 and the normal range is 578 to 1228. His IgM level is 20 and the normal range is 23 to 166. Gavin’s IgA level is 24 and the normal range is 59 to 337.
On the surface this looks bad, especially considering he had his IVIG infusion less than 24 hours before his labs were drawn. I would think that after just being topped off, his numbers would be on the high end or at least in the normal range.
I have a call into his immunologist and I should hear back in the morning.
There are several other things that are significantly off as well but again, I don’t know what it means.
I understand the immunoglobulin side of things and this is very concerning. It’s almost like he’s not receiving his infusions but he is.
His doctor may look at this and say it’s nothing to worry about. Maybe we will just need to adjust his meds. That’s happened before and it’s expected to happen again at some point. Perhaps we’ve reached that point.
At the very least, this is going to require new labs to be drawn. She’s going to want to verify that a mistake wasn’t made.
Assuming the labs come back the same or even worse, since more time has passed, we will have to formulate a plan.
The current questions that I believe are important to addressing this are:
- Are the labs even accurate?
- Why the sudden change?
- Does his dose need adjusted or is the medication no longer working?
- If we increase the dose, do we bump up his current infusion dose or add a third infusion each week?
- What’s going on with the rest of his labs?
- What does this mean in regards to protecting him from COVID?
I have more questions but those are the ones I need immediate answers to. Hopefully, this is easily correctable and nothing to lose sleep over.
Unfortunately, that’s not how Gavin’s body tends to work. If you’ve followed for awhile, you’ll likely remember that Gavin historically goes through phases where new problems seem to pop up out of nowhere. We haven’t had anything like that in a good long while. In fact, it’s been the opposite. He seems to have stablized over the years and is doing well, even off his anti-psychotic medication.
I was not expecting this and as a result, I’m caught completely off guard.
I’ve been stressing out over work and school a great deal lately. This pops up and sorta covers everything else I’m already struggling with, adding to the weight I’m already buckling under. I’m trying not to worry excessively but that’s pretty much impossible for me.
Elliott’s been asking to go walking and I keep telling him no right now because until I know it’s safe for Gavin, we are locking down even tighter. I had to explain to Elliott what was going on so he understood why I was saying no.
Gavin doesn’t know anything because I don’t tell him anything until I know there’s something to actually tell him. That’s sort of a good practice in general when it comes to autistic kids.
Needless to say, I’m completely overwhelmed and seriously worried about what all of this means. I like information and at the moment, I’m lacking information.
I’ve brought Lizze up to speed and we’re working on emergency plans should anything arise that requires hospitalization or anything like that. Right now, it’s hurry up and wait.
Until I know otherwise, please keep Gavin in your thoughts and prayers. I would really appreciate it.
You have all my thoughts and prayers for your son Gavin. I’m hoping this is something that can readily be explained and treated. As the father of a 36 year old autistic son, who has on going medical issues, I know how you feel and how unsettling it can be when our children have medical issues on top of having Autism and we have to go through this roller coaster ride of times of stabilization and suddenly out of nowhere there’s an unforeseen medical issue coming out of nowhere. I hope to read soon from you that Gavin’s problem is easily treated and he’s back medically to where he needs to be. Take care and remain hopeful.