My Daugher Carley

[Guest guest]

I wanted to give an update on my 8 year old daughter Carley. She had her

muscle & nerve biopsy and lumbar puncture back on August 4. I had called the

hospital on August 5 because I knew that the results from the lumbar puncture

did not take that long. The nurse informed me that everything came back

normal except her protein level was slightly elevated. She told me that I

would have to wait and speak with the neurologist to find out what this meant.

After doing some research on this, it almost sounds like this might be something

positive. A higher than normal protein level could indicate some type of

inflammation that mightbe making her symptoms worse and could be treatable. I

hate to get my hopes up but I need something positive to focus on. I then

asked the nurse how long it would take for the results to come in from the

biopsies. She told me to check back in a week or so.

After Carley's surgery a followup appointment was made with her neurologist

for September 6. Obviously my wife and I did not want to wait that long to find

out what the diagnosis was if the results were going to be back sooner than

that. Over the weekend I left a voice mail for the neurologist requesting that

he call me after he looked at the results to let us know what his diagnosis was.

On Monday I also left a message for the nurse at his office to let me know if

the results had come back yet.

I had not heard anything back as of yesterday so I called and was able to

speak with the nurse. She informed me that the results had not returned yet.

She also informed me that the neurologist made it a point not to discuss any

results over the phone instead wanting to discuss them with the parents in

person. Back in April she had an EMG and nerve conduction tests. The

nerve conduction test came back severely low for a child her age. He then

tested my wife and I and found that my readings were borderline abnormal. So

he thought that I had a mild case of CMT. The DNA test for my daughter came

back negative for CMT1. Prior to the biopsies he told me that the best case

scenerio was that she had a mild case of CMT like I did and there were

inflammatory issues making her symptoms worse. It has been a difficult

several months waiting and wondering what is wrong with my daughter. My great

concern is that her nerve conduction readings were so low and that it will

progress to the point were she will need a wheelchair in the next few years.

So it appears that we will now have to wait until our appointment on Sept. 6

to find out anything.

Mike