A's neurology appointment was today. It was a big waste of an hour. The pediatric neurologist seemed uncomfortable that he had no answers. I guess he didn't understand I didn't think he would. He knew very little about LHON. Then again I didn't think he would.
He is recommending we wait till hear hear from the genetic tests. Which my guess is we will hear next week. At our appointment last Friday the doctor said it would take 1 to 2 week for the lab across the hall to have the results. I really want to get her seen by a neuro-ophthalmologist as soon as she can but also I could use a bit of a breather. Its hard because of her age she needs someone who is good around children but the people who have experience have so with primarily adults. The appointments are getting hard on her. I keep having to tell here there will be more. Many more.
My mother is working really hard at getting what ever medical files on the affected members of the family. I don't know what help it will be but I think its good to keep her busy.
We are all worried about A. I will complain a wee bit paying a 50 dollar copay for an unproductive visit. At least that can be checked off our list. Now the waiting continues.