Wednesday, October 13, 2010


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.


Anonymous said...

Hi Penny,

I truly feel for you and understand what you are going through. My son was diagnosed in June 2009 at age 17 with LHON. We went through the MRI's, etc. before getting the blood test. It did take three weeks for the tests to come back so that is a waiting game. I also had to sit down with my sister as she has twin 15 year old boys.

I must tell you, though, his school was great. They provided him with a CCTV at school and we borrowed one to use at home too.

My prayers are with you and your family.

Debbie Bennett

Penny said...

Thank you Debbie. Abby's school has been so proactive. It shouldn't be problem getting her what she needs. I just feel so unprepared.