This morning I took Hadley to a new/different Pediatric Ophthalmologist for a second opinion. Many of the things he told me were the same - there are two types of Congenital Nystagmus and it was good that we had already done the MRI to rule out the brain function type.
He said he feels she has a mild case of Infantile Nystagmus and that it is good that she is controlling it (meaning we mainly only see her eyes move when she is tired). However, this is something that will always be with her she will not out grow it. It was not caused due to being a preemie - she was just one of many born with it.
Our plan is to continue to watch her and note how she looks (head tilt always to right and at how much of an angle) and to go back in six months (End of March). At that time we will most likely schedule the procedure to correct/move her focal point from the right to more the middle for her. Glasses will not help her do it, but the procedure will also weaken the vessels that cause the movement and therefore hopefully help her control it even more. Even though she will always have it and need to deal with it - she should be able to drive, etc. due to it being a mild case.
I was very happy with Dr. Stager, he was very patient reviewed everything I brought, talked it thru with me and did his own evaluation before recommended a plan of action. As I told him - we are not concerned that she can see as she loves to read, do puzzles and watch TV. She also has no problems getting around or doing what she needs to do, yet we knew there were options to helping her and wanted to do them at the appropriate time. He said if it was his daughter he would do it between age two and three.
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