Just wanted to give an update on our visit to UT Southwestern last month. Carter and I arrived at UT Southwestern on August 6th bright and early at 7 a.m. We finally got to meet Dr. Nations and her wonderful staff. I believe we have found a group of Docs who not only know about CMT but actually care and have a great bedside manner. So, for all my Dallas or Texas peeps go check out Dr. Sharon Nations or Dr. Trevedi at UT Southwestern in Dallas.
We of course had to go through all the standard questions and a complete physical check up all over again to compare to what Scottish Rite had. Afterwards we were sent to get an EMG and a NCV done. Real quick for those of you who are new I will explain what a EMG and NCV are. EMG stands for electromyography which measure the electrical activity going through the muscle when it is at rest and when it contracts. A NCV stands for nerve conduction velocity which tests to see how fast electrical signals travel through a nerve. It is not fun..... Carter was not to happy about this. He was already in pain just from the exam and showing them how he walks and so forth. But as usual, he didn't complain and made it through it. Dr. Trivedi gave the EMG and NCV, so we were able to meet her as well and LOVED her. Mom on the other hand had a harder time. Now matter how you slice it, it just does not get any easier seeing your child go through these tests.
After all the testing we met with both Dr. Nations and Dr. Trivedi and they both concluded that he has CMT most likely CMT 2, just like what Scottish Rite said. They said he has progressed since the last test in 2010. Which I already knew to be honest. Since he is in a lot more pain and can't sleep at night due to the pain, they prescribed him Gabapentin. I was very apprehensive at first to give him a pain pill but they assured me it was non habit forming and has little side effects. Carter has been on it for almost a month now and so far so good. It has really helped him get a more restful night of sleep. The only downside is the fatigue it causes, toppled with the fatigue from just having CMT makes for one tired Carter!
Overall, the visit was great and we were very happy with her plan. We are starting physical therapy again to see if there is anyway to help lengthen the Achilles without surgery. She is not optimistic about it, so we are also looking for an Orthopedic Surgeon to evaluate his situation. If anyone knows of one in the Dallas area send me a message please!
Until next time......................"Stay Strong, Believe"
Momma Hayes over and out!
