Home from Em’s neurology appointment…
One of the main things I wanted to talk to him about was her eyes and her weird dilation episodes. When we saw the opthamologist a couple weeks ago, he didn’t seem particularly concerned about it. I mean, he at least didn’t act like it was an emergency but he was concerned in a bewildered sort of way. He wanted to see her back fairly soon to check her pupils and told me to call if it happened again. (Which it has and I haven’t, but only because we were seeing neurology and I am trying to get video when it happens so the eye doctor has something to go on other than my word.) The weirdness doesn’t seem to cause a problem beyond making her a little more dizzy, have more difficulty focusing and more light sensitive. And some double vision, which apparently is a thing.
So, the neurology PA is concerned enough to talk about a referral to a neuro-opthamologist and is ordering an MRI.
Part of me thinks it is a total waste of time and is overkill – she just had a brain MRI 2 years ago, but maybe it is necessary and will show something important. I mean, ruling out tumors is important, right? I am half way tempted to call the eye doctor and get his opinion of having an MRI. If it needs to be done, obviously we should do it… But, if it is just an overreaction, I hate to go forward with it. I know it is going to be ‘normal’ (or maybe I just want it to be).
I just don’t know… But, it is scheduled for April 26th, so I guess we will wait and see. I am usually all for taking things seriously and getting imaging to rule things out, but I am really on the fence with this one.
I did ask about mitochrondrial disease today – Brian is very easy to talk to and is always willing to listen to whatever [seemingly]crazy theory I am onto at the moment. He knows next to nothing about it, certainly no details that are helpful in our situation. But, he doesn’t think I am crazy for thinking about it and even offered to refer us to someone if I wanted. I told him we would hold off while I talked to the rest of the doctors about it. It is now officially mentioned in her medical record, so maybe we are eventually going to get somewhere. It is a start.
Got blood work drawn to check thyroid and Vitamin D levels, so will wait and see what happens there. And we are waiting to hear exactly when the gastric emptying test will be scheduled.
We have been checking Em’s blood sugar per the GI docs suggestion – worried about hypoglycemia – and are getting a sense of a pattern. I have found all kinds of conflicting info online, but I think there is definitely something hinky going on. Probably something along the lines of reactive hypoglycemia, although it is weird. Weirdness is no surprise, though, with this child. I should just write a whole separate post about this part, but suffice it to say that we are on the trail of something.
So, we are doing as Dori says and will just keep swimming.