Post by Emilysmom on Sept 25, 2010 8:08:57 GMT -5
We had a great trip.......just us girls! She sat in the back of the van (she loves to stretch out!) and sang along to her CD's at the top of her lungs.
The doctor was one of the kindest people I had ever met! She spent 3 hours with us, and explained SO much! I now wish I had taken a tape recorder, because there is no way I'll remember everything she taught me. She said that most docs see 1 or 2 patients with Lebers over their career. She has seen dozens, and told me stories of quite a few of them whose sight improved with the treatment she ordered for Emily.
It consists of simply Vitamin B12 and a med called Idebenone.
Emily's left eye was apparently the most recently affected eye and she believes it will respond to the treatment better than the right eye. She did an ultrasound of the eye.........one of the most interesting things I had ever seen. I would have been more fascinated if it hadn't been MY daughter's eyes.
She also did a test that gave a much better idea of what Emily is able to see...........she has peripheral vision, and that is what is allowing her to get around. She could not see the largest "E" on the chart, and didn't seem to even be able to see the wall where the E was located. As we walked out the door to go to a different room for a different test, she stopped at that wall and said to the doctor "Oh! Yes.......it's an E". The doctor had been watching her and said that Emily got a glimpse of the eye chart out of the corner of her eye as we were passing through the door and went back to look at it from the side.
So, she is starting the meds. We go back to Columbus in 2 months to measure for improvements. The doctor wants us to sign up for a research study that is going to be started in Miami that she thinks is very promising. The best part is that if (when) the new drug is approved, the people who participated in the study will be the first to receive it.
On Monday, I am contacting the person in charge of signing up the research participants. And, I'm going to contact the TN School for the Blind to see what they might have to offer her. I keep hoping for something like a 2 week opportunity that she could take part in over her Fall break that would give her some skills for adapting right now. Although, bless her heart.............she has amazed me wit how well she has adapted!
Thank you ALL for your kind thoughts and prayers for her.
The doctor was one of the kindest people I had ever met! She spent 3 hours with us, and explained SO much! I now wish I had taken a tape recorder, because there is no way I'll remember everything she taught me. She said that most docs see 1 or 2 patients with Lebers over their career. She has seen dozens, and told me stories of quite a few of them whose sight improved with the treatment she ordered for Emily.
It consists of simply Vitamin B12 and a med called Idebenone.
Emily's left eye was apparently the most recently affected eye and she believes it will respond to the treatment better than the right eye. She did an ultrasound of the eye.........one of the most interesting things I had ever seen. I would have been more fascinated if it hadn't been MY daughter's eyes.
She also did a test that gave a much better idea of what Emily is able to see...........she has peripheral vision, and that is what is allowing her to get around. She could not see the largest "E" on the chart, and didn't seem to even be able to see the wall where the E was located. As we walked out the door to go to a different room for a different test, she stopped at that wall and said to the doctor "Oh! Yes.......it's an E". The doctor had been watching her and said that Emily got a glimpse of the eye chart out of the corner of her eye as we were passing through the door and went back to look at it from the side.
So, she is starting the meds. We go back to Columbus in 2 months to measure for improvements. The doctor wants us to sign up for a research study that is going to be started in Miami that she thinks is very promising. The best part is that if (when) the new drug is approved, the people who participated in the study will be the first to receive it.
On Monday, I am contacting the person in charge of signing up the research participants. And, I'm going to contact the TN School for the Blind to see what they might have to offer her. I keep hoping for something like a 2 week opportunity that she could take part in over her Fall break that would give her some skills for adapting right now. Although, bless her heart.............she has amazed me wit how well she has adapted!
Thank you ALL for your kind thoughts and prayers for her.
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
]
