The Dr. stepped out of the room and came back in with a faxed copy of Rachel's chart notes. She made a few adjustments on the "butterfly glasses" and then asked Rachel to try again. This time it was MUCH better.....but I knew what this meant. Another change in her prescription.
Ugh!
Rachel sees the Ophthalmologist every 3 months due to Neurofibromatosis. She has Optic Pathway "thickening" and a Pituitary brain tumor....and has had a steady decline in her vision since May 2008.
"There's nothing we can do to save her vision, but we can make it so what vision she has, is good vision." Was THAT supposed to make me feel better? Was I to just walk away with that answer?
What I have learned from living with Neurofibromatosis myself is that you NEVER walk away with an answer that doesn't feel right. You stay until it is explained, and clear...(Not that anything having to do with NF is clear...but you must understand what is happening to your body or your child's body)
The problem here is, however....the Drs CAN'T explain why Rachel's vision keeps getting worse. The Optic "thickening" should not cause this. "Let's just keep an eye on this." Is the answer I am given.
So, even while our questions go unanswered, it won't stop me from persuing the answers.
Some people with NF also have a perception disorder when it comes to numbers and letters 3's look like E's d's look like b's ect this she might have this as well as bad vision you might want to have that cheaked out
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