Ben getting bored waiting. I think he was rolling his eyes at me!We had great day at clinic today! We met our new neurologist, Dr. Flanigan, and we just love him! We learned new things and had an encouraging appointment.
Our clinic involved seeing the genetic counselor. I let him know that I had received my results of my own DNA test and that it indicated that I am not a carrier. He was pleased to hear this-it significantly lowers the chance of my daughters being carriers.
Next, the neurologist, study coordinator, PT, and several others (I don't know who they were) came in. Ben got a little nervous when the room suddenly got crowded, but Dr. Flanigan totally made him feel at ease. He listened to his heart and lungs and then checked his back (I think for signs of scoliosis-a common problem in DMD kids). Then he let Ben listen to his own heart :o) He enjoyed that part!
His favorite part was getting to run down the hall to check his ability and speed. He ran pretty fast! The doctor then asked me if he had a muscle biopsy. He has not had one of those since he had the DNA test to confirm Duchenne. The doctor was pleased with his running.
There are several ways that they test muscle strength. One is the running. Another is having them lay flat on their back and then lifting up their head to touch their chin to the chest. He did this very well! Dr. Flanigan told me that he is doing better than most 6 year old DMD kids! That was music to my ears!
I had all my questions answered too. I took in my list and went through them one by one. He also explained, along with the PT, how to do his stretches better. We will be getting night splints soon too. Then he said something that was VERY exciting! He made the comment that we need to keep Ben walking because there will be an exon skipping trial in the near future-that will help Ben! Very exciting indeed!
The Lord is so faithful :o)
I'm glad that your visit was helpful and that Ben is in good shape, although REALLY sorry to learn that he has DMD.
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