In Ocular News Today…

This morning my mother and I took my daughter to the Duke Eye Center for another evaluation under anesthesia for her eyes. I was very grateful my daughter was able to get an earlier time slot in the day because small children on prednisone don’t like to be told they can’t eat when they’re ravenously hungry and easily outraged due to their medication.

Here’s the update from the evaluation:

They did a fluorescein angiogram of her eyes again to view the blood flow.   She had low blood flow before and as a result, aberrant vessels grew to try and bring more blood to the eyes.    Today they saw the best blood flow they’ve seen since we first noticed symptoms.   The major blood vessels to the eyes look to be getting normal blood flow.  It’s not clear if the periphery vessels are getting the amount of blood they need, mostly because it’s not known what blood flow they were getting prior and/or if some of the vessels even existed.    But from a vasculation perspective, this is very good news.

The Avastin injection to reduce the aberrant blood vessels in her eyes looks to have made some headway.  Vessels are looking smaller and no more appear to be growing.   Great news.

They injected her eyes with kenalog, a corticosteroid, which is another way to try and reduce inflammation in her eyes so they can heal.   There was discussion about reducing the steroid drops or the oral prednisone, but since progress is being made, the decision was to keep everything as it is now and re-evaluate in two to three weeks.

Her retinal detachments look better in both eyes.   We knew the right was worse than the left but I asked about the locations of the detachments today.  Both eyes are detached in the lower half of the retinas, which is where fluid would when upright.   The left eye detachment is in the bottom back and the right eye is most of the back, although some of the top was spared.

We have a new item thought:  The edges of the retinas at the bottoms are coming up a little.  The question is why is this happening?   Is it a function of the drainage from the serous retinal detachments from settling fluids?  Is it the beginnings of a tractional retinal detachment?  Note: this is another type of retinal detachment so I’m thinking we should total bonus points for having yet another thing happening to my daughter’s eyes.   The question is, is it the jelly in the eye pulling on the retinas in some way?   If this is the case and it’s related to pulling, something can be done about it later.  For now, the situation is mild and at the very edge of the retinas.   This is not good news, but hopefully the door prize for, “Most things going wrong with your eyes at the same time,” will be pretty spectacular.

The Remicade my daughter had via infusion last week takes six to eight weeks to get to full strength, so we will hopefully see improvements continuing going forward.   The recovery time for retinal detachments of this type are slow, so we’re looking at another few months before there is great vision happening.   GREAT VISION.   That’s right, you heard me.  (It’s coming, I promise.  It’s just taking its time to get here.)

My daughter’s main doctor, the one who has orchestrated everyone and everything to get us here, including  all the experts in their fields being called in to help try and save my little girl’s vision, told me today that everyone would still very much like to find a diagnosis for what she has.   She’s got something, “similar to” multiple things, but none are a real match.    She went to a conference last week and discussed my daughter’s case with other doctors who’s specialties would give her additional opinions.    She told me, “no one has come up with anything we haven’t tried or looked into, but they’re all thinking about it and will let us know if they think of anything.”   She said everyone was equally puzzled.

One last thing: one of my daughter’s “eye conditions” got renamed or re-categorized as a result of talking to others at the conference.    One doctor said, “I don’t think she has Anterior Segment Dysgenesis, I think it’s more appropriately categorized as Persistent Fetal Vasculature.”   I’ll let you look that one up on your own, but what was interesting was I found out that little curtain of vessels she has over her field of vision is not remnants that haven’t shriveled away, they’re blood vessels that are still functioning.  

How’s that for a technical eye update?  So to sum up, very good news today but we have a long way to go to get back to where we were.

The Big Boy Update:  My son came home from school and said, “Mom, can you call me ’Spike’ today?”   I don’t know where it came from, but I told him I’d be glad to.   He followed up, saying, “but only for today, not tomorrow.”

The Tiny Girl Chronicles:  If I were to tell you my daughter does not recover well from anesthesia, I would be telling you a huge understatement.   She is livid and unconsolable and furious and expresses everything very vocally, usually with ear-piercing screams.   She had calmed down somewhat when my mother and I got her in the car to go home, but she wasn’t done being angry.   She informed us, “everybody is poopy.”  She then proceeded to name person after person from her family to neighborhood friends to school mates to teachers, saying them each in turn, starting with me, “mom is poopy.”