Nathaniel Update – Thankfully Nathaniel’s prescription was approved the first time! Praise God! He will start using it today and hopefully get back to living a somewhat normal life. We are very thankful for having insurance…looks like the retail price would be about $1200!
A number of people have been asking questions about narcolepsy. Not too many are familiar with it…myself included. I’ve always thought is just meant someone sleeps a lot but didn’t know much more than that. It seems that Nathaniel has a pretty severe form of narcolepsy. Here is a link to an excellent summary about childhood narcolepsy for those that are interested in learning more.
In Nathaniel’s situation, he has been experiencing very deep sleeps (and quickly) which makes it very difficult to wake him up. He seems to get into the REM sleep cycle within 8-10 minutes and does not come out of it easily. In most people it takes you 60-90 minutes to get into the REM cycle and you go in/out of it throughout the night. Nathaniel stays in the REM cycle the entire time he is sleeping. He has intense dreams during his sleep, but can’t remember anything about them afterwards. As you can imagine this has been very scary for him, since when he wakes up he ends up very confused and disoriented. Many times he will wake up and feel paralyzed where he can’t talk or move until someone either touches him or it eventually goes away after a little bit. This is called sleep paralysis.
He has moments where he gets overly excited and somewhat collapses. He usually has enough time to catch himself, but it is similar to the feeling you have when your legs are tired and they just can’t hold you up any longer. This is called Cataplexy or a sudden loss of muscle movement/control.
He has also been doing weird things like getting up to go to the bathroom but not remembering it. Sitting up and talking then going right back to sleep and not remembering anything about it. We have all done similar things like this on occasion, but his are tied to narcolepsy. This is called “Automatic Behavior” or performing a task without having conscious control over what you are doing. Sort of like when you drive to work and don’t remember how you got there. The problem for Nathaniel is that he can easily go through daily activities, but due to his narcolepsy won’t be “present” in the moment (so to speak). Hopefully his medication and adjustments to his sleep cycle will help fix this issue.
There isn’t a cure for narcolepsy, but thankfully it is possible to control most of the symptoms with medication and lifestyle adjustments. It’s going to be a lifetime adjustment for him and our family. I don’t want to get into the details of what that means right now, but we trust God that he will pull us all through this next adventure.
Thank you for your continued prayers and support. We are very fortunate to have you in our lives.