Today we met with the neurologist. First they tell me that my referral had expired on the 1st. Nice, I called my doctors office and asked for them to get a new referral. Not sure if the paperwork will be done in time or not. Either way we stayed.
Then we got in to see the doctor and the nurse told me that they didn't have the results of the 24 hour EEG. Thankfully they were able to get the results from the hospital and look over the video.
The results were not what I expected. I was told that she has more than epilepsy going on. She has some type of sleep disturbance. This disturbance is happening so often that she is not getting into REM sleep. She said that not being able to get REM sleep has an impact on her processing and memory.
She also has some other concerns so we now have to do some genetic testing, a sleep study and she wants us to see a sleep neurologist. I have never heard of a sleep neurologist. We may have to go to North Carolina to see one.
Right now we have orders for blood work and are waiting for further instructions. They are having a meeting of neurologists to discuss the best course of action. We are not sure if we will have the sleep study locally or in NC.
I am not sure where to go from here. I guess we are dealing with some type of a sleep disorder to add to all the other issues she is struggling with. It just doesn't seem fair sometimes. I wonder if all of her issues are in some way related. Perhaps it is some type of genetic disorder that we haven't considered.
I am digesting and researching.
Anyone familiar with sleep disorders.... or heard of a sleep neurologist?
I hope you are able to get answers. My husband currently has two neurologists, one is a sleep neurologist, and the other is a specialist in MS. I think it is like any other field, they just specialize in one area. It doesn't mean that they can't help in another (my son's allergist has diagnosed much more than allergies for us). Good luck.
ReplyDeleteI'm a sleep neurobiologist, and a foster parent. Sleep disorders can mess people up pretty badly. If she has a sleep disorder and there is some kind of intervention available, it will likely make a HUGE difference in her quality of life, usually very quickly. Best of luck!
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