Pediatrician Didn'T Really Understand N. Miffed.
Posted 06 November 2009 - 08:53 PM
When we got into the pediatrician's office, we had a long wait so I read some of the brochures. The brochure on narcolepsy recommended that naps not be taken during the day. Once the doctor did come in, I discussed childhood sleep disorders with him, and I pointed out to the pediatrician that pwn are encouraged to take a nap contrary to the literature that the hospital had to offer. He made a snippy comment that he'd better get in contact with the people that made the brochures. Goes to show that it is too easy for our children to go un/mis dx'd.
My oldest was sent over for an EKG after the appointment. Cardio/pulmonary is where the sleep lab is, and fortunately I saw the sleep tech there. The man is so awesome. I told him what the pediatrician said, and he reiterated what I already knew, which is that pwn are encouraged to take naps to combat EDS. He said that the brochures were a little outdated, but I'm still giving them to the school nurse. I'll point out the error and give her the sleep lab number. The tech said that he'd be happy to talk to anyone. Super guy.
I don't really have anything else to add. Tired but wanted to share this.
Posted 07 November 2009 - 02:10 PM
You might want to go to the NN main website and look for downloadable/printable brochures about N, medications, etc. that are more up to date. NN has also just printed but not yet distributed a new brochure titled "Narcolepsy In the classroom" If you call or E-mail the office they may be able to send a copy to you.
Other organizations may also have materials that you can download or ask for. Such as:
National Sleep Foundation www.sleepfoundation.org
Restless Leg Syndrome Foundation www.restlessleg.org
American Sleep Apnea Association www.sleepapnea.org
I hope that this helps.
Posted 10 November 2009 - 12:25 AM
Posted 13 November 2009 - 10:05 AM
Posted 16 November 2009 - 01:46 PM
where did you send it? my mailing address?