Well, I'm sitting here at the hospital watching Addy sleep for her 24 hour EEG. Kind of weird just sitting here watching someone sleep. Actually 2 people, since Aaron is with me so we can take shifts.
It's a video monitored EEG which means that along with her brain activity, she is being recorded on video as well. So, I am also staring at her in the monitor screen and watching to make sure the EEG monitor stays consistent. I have a button to push each time I see an odd movement from her which in turn they then go back and look at on the video and EEG to determine if it could be seizure activity. So far, no button pushes.....and I don't foresee there being any. We don't normally see anything with Addy that would indicate seizure activity, however we have never watched her sleep before and since a lot of seizures can take place at night, I guess it's at least something to watch for and rule out.
We also had her EMG testing done 2 weeks ago. This was a muscle conduction test to check for nerve velocity. The first part of the test requires a probes being placed on different muscles, which they then send an impulse into the muscle to see how it is transmitted. Each time the impulse is sent kind of feels like an electric shock. Addy was given a small does of sedative through her nose before the procedure started, but I guess it's just used as a calming mechanism and didn't actually put her to sleep. Therefore, with each impulse sent, she complained. I can't blame her. The second part of the test was worse. They actually stuck very thin needles into the muscles. She complained even more for this. However, everyone involved commented on how well she did as most kids cry a lot and Addy only complained. Coincidentally, Dr. Acsadi's wife (who is a neurologist for adults) was helping to run the test because the technician was learning the new technology. Therefore, when the test was finished, she was able to tell me that everything looked normal. The only thing found was a slight decrease of muscle function near the foot/ankle area, which could be a result of underdeveloped muscles. At this time the results of the EMG will probably read "congenital myopathy" which continues to be a very broad term and really doesn't tell us anything.
We then went for a blood test the same day to rule out any dystrophy. The nurse promised to call me with the results, but still haven't heard anything. So, while we are sitting here at Children's I already have requested a doctor to get me the results. Was told I should get them in the morning. I am hoping that the lack of a phone call means that the test results were normal.
We are heading to Muscular Dystrophy clinic this Wednesday where we will see Dr. Acsadi again. I will be able to discuss the results of the EMG, blood work and EEG there. Also will be able to find out what our next step will be. Dr. Acsadi's wife felt that a muscle biopsy would probably be suggested. I am very torn about this if that is what is suggested. It's such an invasive procedure, so I'm not sure if I will go through with it. Many questions need to get answered before I make a decision. Here are some pics of Addy during the EEG.