Wednesday, August 31, 2016

The Doctor Grace Call

We saw my daughter’s pediatric ophthalmologist last Friday.   She looked at what she could and evaluated what she could get my daughter to sit still for—surprisingly much as my daughter was in a helpful mood.   Dr. Grace planned on calling Dr. Trese and coordinating their plan for the cataract and how to proceed.   She said she’d call me when she had had a chance to talk with him.

Today I got that call and as has happened multiple times with my daughter’s eyes, things from a, “this is what we’re planning to do” direction have changed.    This is okay, this is fine, the more thinking we have going on about what would be the best path for the crazy, un-named condition my daughter has, the better.    Here’s where we are now:

The cataract may not be over the central vision portion of my daughter’s left eye.   If it doesn’t progress further inwards, they will leave the lens in place.   The clouding of her lens may also be not cataract specifically, but those little vessels she had from birth, something they called, “Persistent Fetal Vasculation”.  If that’s the case, the lens will stay in.     Basically, they don’t want to remove the lens unless they have to because it could cause—get this—retinal detachment.

It’s not a high chance, but given all that’s happened to my daughter’s eyes and taking into account their rather delicate nature, it’s better not to risk it unless necessary to maintain her vision.   It can also cause ocular pressure to drop—something the left eye has recovered from and is measuring a low normal.    So the doctors don’t want to mess with her left eye if they don’t have to.

I asked about the cataract though, specifically what might cause it in such a young child.   Two things are top candidates, both of which my daughter had.   The first is inflammation.   The original incident, unknown in nature, caused dramatic inflammation in my daughter’s eyes.    How have we been combating the inflammation?   Steroid drops, the second culprit in the cataract realm.   Most people aren’t on steroid drops for prolonged periods like my daughter.   But she needed the drops.  The eye needed to be calm and not inflamed so the retinas and everything else could heal as best as possible.   Even on our call today, Dr. Grace believed the value of continuing the steroid drops far outweighed the potential of cataract development.

Next steps:  We have an EUA with Dr. Trese on November 7th.   At that time he will make his next recommendation for future plans.   He told Dr. Grace there is a tool they have at Duke their specialists use that he doesn’t have.  Their handheld Optical Coherence Tomography machine would be able to get a better view of my daughter’s retinas in some ways.   Additional information would be good to have.   We’ll have to see later this year.

The Big Boy Update:  Did I mention my son thinks the pompoms he gets for being gracious and courteous come from my armpit?   It was an accident when it first happened and loath as I am to lie to him, I haven’t bothered to tell him he’s not exactly correct when he tells his friends where his pompoms come from.   I gave a pompom to his sister yesterday (based on his suggestion) and I showed him how I put the pompom under my arm and then let it fall down when his sister asked where it was.   He thought that was funny but didn’t make the connection that they weren’t produced under my arm in general.

The Tiny Girl Chronicles:  My daughter came downstairs crying early this morning.   She had a dream the pompoms had all spilled out on the ground.   I told her they were safe and then she fell back asleep.

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