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The Dolenc paper reminds us that depression could be underfoot as well.

NotMuffy wrote:A real danger would be getting a pathological MSLT value (from insufficient sleep) and then being given a prescription for ProNuvigil.

The biggest danger, IMO, is that he winds up with a false diagnosis of narcolepsy, they miss a diagnosis of OSA or something else that they could be treating, and this impacts his ability to drive, etc.

jbn3boys wrote:Okay, this really didn't need to be an argument about the value, or lack there of, of an MSLT in a child (or anyone, for that matter.) Whether you think it is a good idea or not is not the point....

Well, clearly (now anyway), it's not the reason why you posted. But that's one of the benefits/drawbacks to participating on a forum like this--you're going to get other people's opinions, whether you'd like to have them or not. It comes with the territory. My opinion, which likely will deviate from yours, is stated in my signature. I see doctors as limited in their knowledge, competence, and care. I see parents as responsible for being educated and informed advocates for their child's best interests. So I didn't just "think" about whether it's a "good idea or not" to have an MSLT in a child or an adult, like I would contemplate whether to have chicken or fish for dinner. I read several research papers on the topic, tried to understand them, researched the driving laws in various states in the U.S. and came to an educated opinion about whether I would allow another doctor to subject me to yet another MSLT. If you don't want my not-entirely-ignorant opinion, post on another forum, or put a note that you'd like me not to respond to your post entirely. If I do respond, I'm going to respond to what I perceive as the content of what you post (to the best of my sometimes tired ability to understand what you're asking), and I'm going to bring in relevant (and sometimes irrelevant) information as I see fit.

maybe some ideas on what it's like to be at the sleep center for 24 hours (I've never been there even 12 hours)

It's boring.

what you do/did between naps, anything I should be sure to take with us, anything that we might bring that would be totally pointless, etc, etc, etc.

Whatever he would normally do if he was stuck in one spot, unable to leave, and had to entertain himself for hours. This of course depends on his interests and could range from books, DVDs, video games, a cell phone, drawing/writing supplies, etc. If you're going to stay there, you can bring games that the two of you can play. Whatever you would do to pass the time. He can't sleep between naps.

SleepingUgly wrote:

NotMuffy wrote:A real danger would be getting a pathological MSLT value (from insufficient sleep) and then being given a prescription for ProNuvigil.

The biggest danger, IMO, is that he winds up with a false diagnosis of narcolepsy, they miss a diagnosis of OSA or something else that they could be treating, and this impacts his ability to drive, etc.

How would they end up with a "false" diagnosis of narcolepsy? A bunch of SOREMs on MSLT? If the kid simply has insufficient sleep,the likelihood is far greater that there'd be SOSWSs instead. Thus far, there's nothing to indicate sleep-deprivation, and more importantly, REM-deprivation, that would be necessary to generate non-narcoleptic SOREMs.

When you hear hoofbeats, don't think zebras.

This is also contingent upon:

• While this person may not know everything about the sleep habits of this kid, at least she knows something;
• The Medical Team is at least a little smarter than a pile of dung, and will look at the half-dozen other features of narcolepsy to establish a diagnosis; and
• If they're not not smarter than a pile of dung, there's also the possibility that he could be narcoleptic and they're going to miss it. Not all narcoleptics will have the necessary number of SOREMs on MSLT.

BTW:

SleepingUgly wrote:Well, clearly (now anyway), it's not the reason why you posted. But that's one of the benefits/drawbacks to participating on a forum like this--you're going to get other people's opinions, whether you'd like to have them or not. It comes with the territory. My opinion, which likely will deviate from yours, is stated in my signature. I see doctors as limited in their knowledge, competence, and care. I see parents as responsible for being educated and informed advocates for their child's best interests. So I didn't just "think" about whether it's a "good idea or not" to have an MSLT in a child or an adult, like I would contemplate whether to have chicken or fish for dinner. I read several research papers on the topic, tried to understand them, researched the driving laws in various states in the U.S. and came to an educated opinion about whether I would allow another doctor to subject me to yet another MSLT. If you don't want my not-entirely-ignorant opinion, post on another forum, or put a note that you'd like me not to respond to your post entirely. If I do respond, I'm going to respond to what I perceive as the content of what you post (to the best of my sometimes tired ability to understand what you're asking), and I'm going to bring in relevant (and sometimes irrelevant) information as I see fit.

is your husband away?

BTW2 (or maybe we're up to about 6 now), as part of the protocol for MSLT, they should do a Urine Drug Screen. Statistically, there is a far greater likelihood of a +DS than N.

Oh-oh.

Only 12 posts to go.

I better start rationing.

You sound quite angry, SU.

I am not naive, I am not uninformed, I DO appreciate the information that was given. However, I do not feel it needed to be an argument within this discussion. This discussion was not about the validity of the MSTL as a diagnostic test. You can take that "discussion" to it's own thread. (I would venture to bet you already have.)

I was simply asking for advise from anyone who has had their child in for these tests.

Like I said, I appreciate the information, just not the fighting, bickering, and arguing.

Okay, maybe I AM a little naive....I seem to believe that people on forums can actually be NICE to each other.

I didn't view it as "fighting" or "arguing" with the connotations those words hold, and although I can't speak for NotMuffy, I doubt if he does either. I also doubt either of us thinks we weren't "nice" to each other (well, notwithstanding the "husband away" comment!). I don't have the time nor the interest to take any MSLT discussions to another thread, and limited as my knowledge is about narcolepsy and MSLT, limited it will remain now that I've deemed it irrelevant to my situation and my child's.

I hope whatever information you distilled from this thread was helpful, and I hope that your son's doctor is deserving of your trust and will nail your son's problem on the head. A known problem is always better than an unknown problem (although the latter may still be better than a wrong diagnosis). I've lost my faith in how labs detect SDB, especially the more subtle types that aren't associated with lots of desaturations.