tag:blogger.com,1999:blog-1057840461279409259.post9159062757863410311..comments2010-02-09T07:26:31.180+01:00Elliehttp://www.blogger.com/profile/14152853731050735658nisfornarcolepsy@gmail.comBlogger2125tag:blogger.com,1999:blog-1057840461279409259.post-56942798951250725382010-02-09T07:26:31.180+01:002010-02-09T07:26:31.180+01:00I don&#39;t know why blogger isn&#39;t liking my blog or email address on this post. My blog is gallopinggraceyouthranch.blogspot.com and my email is maxandmichelle@aol.com<br /><br /><br />Thanks again. :) <br /><br />MichelleThe Wadeshttp://www.blogger.com/profile/15805015528223049604noreply@blogger.comtag:blogger.com,1999:blog-1057840461279409259.post-48324998314703593742010-02-09T07:23:16.824+01:002010-02-09T07:23:16.824+01:00Ellie, I thought I wrote a comment to you last week on one of your posts, but now I can&#39;t find it. (I might be losing my mind.)<br /><br />I am the mother of a nine year old narcoleptic boy. This is a new diagnosis--his symptoms didn&#39;t develop until mid October/early November. I was on the doctors right away to find out what was wrong. Was he depressed? Mono? Narcolepsy? My mother-in-law has the disorder so I was familiar. I had his primary, a neurologist, and two sleep specialists tell me they did not believe it was narcolepsy. Through my insistence for a sleep study, it became official. He also has mild apnea, leg jerks because of low iron (or does it have to do with the narcolepsy?), cataplexy, hypno. dreams, etc. Poor guy is really going through a hard time right now. <br /><br />We saw a second neurologist on Saturday who officially confirmed his diagnosis. (His mslt pretty much already did that--fell asleep 2 min, 3 min, 2 min, 3 min with REM within 30 seconds on all four.) <br /><br />This post of yours is so very timely for us! Not only were you in fourth grade like Garrett is, but you had to figure out a way to take naps. I drove to his school and had him nap one day in my car. He was so horrified to miss recess. He had been looking forward to playing football. He bawled and bawled. He does that a lot lately. He is not our same sweet boy. He is angry, sad, explosive. It&#39;s been pretty terrible. When he does laugh, his cataplexy is bad. Some times he just goes down to the ground and lies there for a while. If he doesn&#39;t go down, he sounds slurred, drunk, and weird. My heart breaks for him that he will be tired his whole life. I am so happy to see you a productive person-- a married one at that! :) <br /><br />Thank you for having this blog. I am thinking of starting up my own on the subject. I already have one for our youth ranch--what&#39;s one more to manage? <br /><br />His doc wants to start him on Provigil. Please tell me through all your studies, how common are this horrific side effects that are listed? There is some syndrome that sounds absolutely horrendous. I think that&#39;s all he needs. We would love to give him something that will make him feel better. Does being on Provigil help with your cataplexy? His excessive daytime sleepiness was originally his worst problem--now the cataplexy has taken its place. He is saying he doesn&#39;t want to sign up for baseball or basketball because he can&#39;t run well anymore. Also, do you also experience the scary dreams? Poor guy is coming in our room at least once a night letting us know how bad his dreams our. So heartbreaking.<br /><br />OK, thanks for any help or words of encouragement you might be able to provide. <br /><br />Michelle from Alb, NMThe Wadeshttp://www.blogger.com/profile/15805015528223049604noreply@blogger.com