Hi. I'm online and happy to answer your question today.
lebers is a good thought in someone that age. Has she had an ERG done?
Emery University is a very good place. If you feel things are not being done to your satisfaction there I would suggest a visit to Wills Eye Hospital in Philadelphia. They are one of the best ophthalmology departments in the world.
I am assuming that your daughter, other then the vision problems, is healthy, had a normal gestation/birth, takes no medicine and has not been exposed to any toxins, trauma etc.
welcome to the chat room. Are you available?
My daughter has had no other health issues. I like Emory and think they are top notch. They seem resolved to the fact that it must be genetic even though blood test are negative. I realize that test are not available for many genetic disorders. Emory has pushed back our next appointment to 6 months. Should I be satisified to sit and wait for science to catch up?
We have had an ERG. Normal.
As a retina specialist it seems that they have already done everything that can be done. Tell me. Was your daughters vision normal up the time she started having problems? Anyone else in the family tree have any visual problems?
And I also think that Emory is an excellent program and will leave no stone unturned. I only mentioned Wills as they are big into research etc.....don't think they, in the long run, would be able to do anything for your daughter that Emory wouldn't be able to do.
sometimes viral infections, TB etc can cause bilateral optic atrophy/paleness with central vision loss....but I'm sure they thought of that...
She was diagnosed as farsighted at age 3 and has worn glasses since then. She did have one eye stronger than the other and patching was done until both eyes were equal. She was a very good reader up to the age of the central vision loss.
ok. I think that a recheck in 6 months, after such a complete workup, is not unreasonable.
As a parent I can only imagine how hard this must be for you. I don't know if I, personally, could sit around for 6 months waiting to see what the next examination has to offer. I would probably be the one to run to Wills, put my daughter though a bunch of the same tests and end up right where I started......if you get what I mean.
Yes, I understasnd. We plan on keeping that appointment. Any thoughts on COQ10? Other than Wills, can you suggest any other facilities. I appreciate your time. Thank You Very Much.
There has been no medical evidence that coq10 is of any value as a dietary supplement. You body makes all it needs.....that being said, it won't hurt to try it. What have you got to loose? Wills is the best. I figured you must be on the East coast since you are going to Emery...Wills is just "up the road a bit"
I wish I could have done more then just confirm that everything that can be done is being done.....
New York Eye and Ear is also very, very good, as is Univ of California San Francisco.....
We're in Middle TN. Confirmation that we are doing all that needs to be done is good news. Thanks Dr Rick. God Bless.