Atrophy

I wish I could report good news today but there isn’t any.   My daughter was under anesthesia for about fifteen minutes, which is all Dr. Trese needs to see what’s going on in her eyes.  Her right eye, for now, is presumed completely sightless.  Dr. Trese is considering opening the internal scar tissue up at some point, possibly in the near future if there are signs the eye has any function at all, but for  ow we're leaving it as is and focusing on the left.

There have been pressure issues over time of both high and low and my daughter has a host of drops to help manage that as best as possible,   The right was presumably low based on a touch test my husband did two weeks ago so she stopped with two types of drops in the right.  It’s holding at seventeen now, which is good.  The left was at twenty-nine, which is better.

I talked to Dr. Trese about getting a handheld pressure reader for home so we could monitor her.  In the past, both he and Dr. Grace haven’t been keen on the idea but he thinks now, with a telemedicine initiative happening at Duke it might be something to pursue with Dr. Grace and her associate who is leading the group at Duke.  We'll see Dr. Grace next week and discuss further.

The left eye's retina is reattached, although there is a little bubble of retina tissue he thinks is due to the detachments and edema. The bad news is the area of atrophy in the central portion of her left retina.  We know her vision has been degrading and this is the cause.   She can likely see splotches of area but some regions are non-functional.

The bad news is typically this type of condition doesn’t recover and only worsens with time.   My daughter would potentially be a good candidate for cell transplant, but this is in trial and not for children nor people with conditions like hers, so it might be years off.

Dr. Trese is working on a trial for a medicine that will potentially make the environment in her eyes better and her cells might regenerate on their own, only the research isn't funded yet.  I told him to send me an email and I’d contribute, and then he told me he needed seven million dollars.  We laughed as I told him that was a little more than I was up for donating.   He said he was meeting with a group on Halloween that did have seven million dollars and he was hopeful they would fund the project.  But again, that's two or more years out, pending funding and FDA approval.

He mentioned he gave a presentation in Washington last week where Wiley Chambers, the FDA's head of ophthalmic drugs, was in attendance.  He was watching for positive signs from Wiley and things looked good so far, so he has hope for his trial and drug in the near future.  In the meantime, he told me there was a matching grant, so if I happened upon three-and-a-half million, that would do just as well.

I asked if her poor vasculation was an issue for her eyes, preventing them from thriving,   He said that was less of a concern.  He thinks her vision is not only splotchy, but variable because fluid under the retina moves around, making her vision inconsistent.   Her peripheral retina is still good though, so she should still have some peripheral vision at least for now.

So there’s an expensive trial my daughter might be a candidate for, and cell transplant research that may be available in a few years, but for now we're doing what we can to keep the vision she has remaining.

The Big Boy Update:  My son is with Nana today as it’s a holiday from school. We didn’t tell my daughter because it would have made her sad to miss a day with Nana.

The Tiny Girl Chronicles:  At lunch after my daughter's EUA today she told me, “I like every single color except pink.  The only kind of pink I like is rose.”  Then she added, “I like British colors too.”