We’ve been working on this for some time, and as of yesterday we’re taking my daughter for a second opinion on her eyes. I dislike that phrase, “second opinion” because the number of eye specialists that have been involved in my daughter’s case as well as other, cross-discipline doctors, has grown into quite the list. I had to create a spreadsheet just to keep track of them.
The care we are receiving at Duke University Hospital and the Duke Eye Center is excellent and yet we are still struggling because we have no diagnosis for my daughter’s condition and the treatment she is receiving is not seeing the results we had hoped for. She is still well beyond legally blind and the school system’s eye specialist evaluator suggested a school for the blind and the introduction of braille as soon as possible, if, and she agreed we were on uncertain ground, her vision were to remain at the current state.
Throughout the last several months, starting at the point my daughter was initially admitted to the hospital on September 2nd for an expedited workup, we have been collecting information on where to go, if needed, for an additional opinion/evaluation. I have second spreadsheet on all the doctors/locations people have suggested. We have heard the phrase, “one of the best in the nation” many times and we are so grateful for all the suggestions and advice from our friends and friends of friends and even friends of friends who had no idea who we were but wanted to help out a family who had a little girl who suddenly went blind.
Of the suggestions we collected, I made a list of those most mentioned and specifically, those recommended by experts in the field of ophthalmology and retinal disorders. I emailed our two main doctors and asked for their advice and recommendation. They agreed with the one name we had heard more than any other, Dr. Michael Trese in Denver with Associated Retinal Consultants, specialists in “diseases and surgery of the retina and vitreous.”
We knew there would be no way we could get an appointment with Dr. Trese quickly ourselves. Our doctors have been working with Dr. Trese’s office to facilitate a visit for us and as of two days ago, we are scheduled to have my daughter evaluated under anesthesia by Dr. Trese and his team on December 14th. We have made travel arrangements and we are anxiously awaiting the appointment.
More when we return. Hopefully some additional insight.
The Big Boy Update: My son was in a hurry to get to Tae Kwon Do the other day as we waited at the red light just before the parking lot. He said, “we should cheat” when I told him we couldn’t go yet because it wasn’t our turn yet.
The Tiny Girl Chronicles: In addition to my daughter’s upcoming evaluation by Dr. Trese in Detroit, we have another evaluation under anesthesia (EUA) next Wednesday. She will have a brain MRI just before which will show if any changes have happened in her brain since the prior MRI in early September. There will be another specialist looking at her during her evaluation as well. I’ve also talked with her rheumatologist yesterday and we are going to reassess the immunosuppressant medication after the EUA and MRI to determine if any changes should be made in her course of treatment.
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