We also don’t have an answer as to how to stop whatever it is that’s causing the problem but the overwhelming suggestion across all the doctors we’ve been working with is to treat with high doses of IV steroids. If the cause is inflammatory-based or is some sort of auto-immune response (although neither are confirmed) then steroids should make a significant difference and will help with a plan moving forward.
The last part is how to get her vision back to what it was. This will be dictated in part by how well the steroids are doing their job. I had hoped the solution was to get the fluid gone from behind her retinas and her vision would show significant improvement quickly, but that may not be the case. We’re not panicking, though. Just like we wouldn’t say, “oh no, she broke her leg, she’ll never be able to walk again!” we’re not thinking, “her retinas are detached, she’ll never have good vision again.” The point here is that healing takes time. And just as with a leg break, there is a chance the leg won’t be like it originally was before the break; with her eyes, it’s a similar situation—we’re not sure what her final visual outcome will be yet.
So, let’s focus on the ocular issues she has right now and look at how healing needs to proceed in order to get her vision back to where it was: Initially, we thought the beginning of the visual symptoms my husband saw (pupils not being round) started everything off. We know a little more now and will know even more after this week’s upcoming re-evaluation of her eyes, but some of the problem has been going on for longer than two weeks.
What the eye doctors saw—we had three specialists look at her eyes on Wednesday—was low blood flow to her eyes. Were her vessels extra small to start? We found out her eyes are slightly smaller than normal, but does that factor in at all? She has vasculitis in the blood vessels feeding into the retina which has caused a thickening of the vessel walls and inflammation. The body’s response to vasculitis is to grow more blood vessels, only the kind of vessels that grow are undesirable. They’re commonly in the wrong place and may even leak. My daughter has some of these extra blood vessels, which means the situation isn’t brand new as it takes time to grow vessels.
So the question is, what is the cause of the lack of blood flow to the eyes? Is it an inflammatory issue? Can it be corrected? The blood flow issue is the one the doctors are looking for a cause and solution for, because without good blood flow to her eyes, her vision won’t improve and may continue to worsen.
The second issue, which is the primary cause of her sudden vision change, is the bilateral retinal detachment. Within a very short time (hours? days?) both retinas detached. This is rare and doesn’t happen without other diseases, conditions or trauma. The type of retinal detachment she has is Exudative Serous Retinal Detachment which means fluid from the eye flows into the space between the retinal layer and the layer beneath it. This is uncommon to happen in adults and almost unheard of in children.
It’s also not “fixable” in the standard way you would fix a torn retina with reattachment surgery. The first thing that needs to be done is for the fluid between the layers to go away. At that time we can look at the process for addressing the detachment. We’re going to see a retina specialist (or possibly two) on Wednesday who will have more information for us. I don’t know what to expect with a child with an uncommon eye condition as far as healing and/or repair goes.
But what about her vision? What can she see? I can tell you this, she is not blind in the extreme sense of the word. She sees things and can discern items quite well at very close range (from two to five inches.) Today while we were at the hospital we played a game with flash cards. She could tell what about two-thirds of the cards were. Of the other third, some of them I’m not sure she would have guessed with her original sight, but some of them she definitely would have know, like the flashlight on the top of the left stack (the ones she said, ‘I don’t know’ to):
She can navigate around a room or outside with ease. She doesn’t miss stairs and can interact with you easily. But she is not able to see more than big blobs for a lot of her world right now. Those flash cards at five inches she can discern, but at eighteen inches, she’s not sure where the card is. When you put something out for her to take in your palm, she has to hunt to find it. There are about fifteen more things I could write here I’ve observed that have almost made me cry to see happen, but I know her vision situation isn’t permanent in its current state.
So what is the future of her vision? I can’t tell you. We feel very confident that it will be dramatically better than it is today. We’re not completely sure it will be back to one-hundred percent of what it was. There is also a chance for a worse outcome, but there’s no evidence to suggest we need to be considering that as a possibility today, so we’re not, dammit.
The Big Boy Update: Nana brought her cap guns to town. There are no projectiles, just a popping sound as the hammer strikes a chemical dot on a roll of paper. My son *loves* playing with these. My dog and my daughter, on the other hand, don’t like the sound.
The Tiny Girl Chronicles: “Is that the flushing toilet?” My daughter has an IV in her arm that’s been there for several days. She has gotten familiar with some of the medical terminology being used around her. Before they give her any medication or hook up to her IV line they do a “flush” by pushing water through the line first to make sure it’s still working. She asked today if it was the flushing toilet. She doesn’t like the line flushing part and after the flush was done I heard her mumbling under her breath, “bad toilet, bad toilet.”
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