Here is the latest on the ongoing medical confusion....
EEG.....He had an EEG done to monitor his staring spells he has. The problem...the EEG only lasted 43 minutes. The chances that the EEG would catch one of the the staring episodes in that time frame was extremely rare. Of course the Dr. here (the one we don't care for at all) said that it was normal but that unless it caught the actual episode it would show normal. So I asked about doing a longer one and he denied the test and said UNLESS there is ongoing concern he is happy with the results. School has been continuously concerned of these episodes so I might have to have them write a letter or something. Apparently a parents concern is not enough for this doctor.
SLEEP STUDY...That was a long night! But they ended up doing an entire EEG for the entire night. We should get the results on this Friday. We are glad they did a full EEG with the sleep study (they normally don't) but because he has these episodes when he is awake we are unsure on how and what the EEG will show. I will update about this on Friday.
MUSCLE TESTING...All I can say is frustration!!!!! When Andrew originally had his muscle biopsy, which was in the Spring of 2006, we were told that they took enough muscle so if any other testing had to be done, there would be some frozen at the lab. Well Dr. F, in Philly (who we really like!) requested to original muscles slides. He wanted to make sure these slides were consistent with DMD. He contacted me and said the are consistent with DMD but he wanted to do some more testing so he wanted me to request the muscle from the lab and have it sent. I contacted the lab and a week later they got back to me and said there was no muscle left. They used ALL the muscle during the original test!!!! So now we are left with doing another biopsy. We are very much undecided if we are going to do this or not. We go back down to Philly at the end of March so we will talk with Dr.F then about it.
If you are still reading, thanks for hanging in there and also thanks for your continuing support!
5 weeks ago