14 yr old to have PSG and MSLT--Advice?

Anyone have any advice on a child having a sleep study and a "nap" test? My 14 yr old son will be going in Sunday night for the PSG, and then staying for the day on Monday for the Multiple Sleep Latency Test (nap test). He does not snore, but has a very difficult time getting to sleep at night, and is extremely tired ALL the time. He's always been a light sleeper, and often has commented that he is awake late at night, or multiple times a night. It just seems that the tiredness has gotten progressively worse, to the point I'm concerned about it. (And that takes a LOT for me.)

I've had PSGs myself, so that part doesn't concern me. I'm more curious about how to keep him busy between naps. I'm also wondering about how long of a day it might be for both of us.

Has anyone else done this with their kids? teens? Do you have any suggestions for me?

Thanks,
jbn

If they find anything abnormal in his night time study, or if he doesn't sleep enough, they should not be doing an MSLT. There are a number of other recommendations about how much sleep he should have nightly going into an MSLT as well. As far as I can tell, the only good reason to do an MSLT is if they suspect narcolepsy. At puberty SDB can worsen in boys, as testosterone makes muscles, including the tongue and other muscles in the airway enlarge.

BTW, I've come to regard "does not snore" as not equivalent to a sleep study saying the person doesn't snore. For example, my son and I do not snore by anyone's account, yet on both of our sleep studies they wrote that we snore. So it apparently doesn't take much to be called a snorer.

SleepingUgly wrote:If they find anything abnormal in his night time study, or if he doesn't sleep enough, they should not be doing an MSLT. There are a number of other recommendations about how much sleep he should have nightly going into an MSLT as well. As far as I can tell, the only good reason to do an MSLT is if they suspect narcolepsy. At puberty SDB can worsen in boys, as testosterone makes muscles, including the tongue and other muscles in the airway enlarge.

My guess is, if they allow him to sleep until he wakes up (which they said they would), he will have slept enough. The neurologist thinks he has something along the lines of delayed sleep phase syndrome. We'll see. He is just SO tired all the time, that I guess they figure the MSLT is a good option, even though he is not "sleepy", just "tired".

SleepingUgly wrote: BTW, I've come to regard "does not snore" as not equivalent to a sleep study saying the person doesn't snore. For example, my son and I do not snore by anyone's account, yet on both of our sleep studies they wrote that we snore. So it apparently doesn't take much to be called a snorer.

That's really interesting. I had no idea. I guess I should say that no one has ever noticed him snoring.

jbn3boys wrote:My guess is, if they allow him to sleep until he wakes up (which they said they would), he will have slept enough. The neurologist thinks he has something along the lines of delayed sleep phase syndrome. We'll see. He is just SO tired all the time, that I guess they figure the MSLT is a good option, even though he is not "sleepy", just "tired".

The MSLT has no role in the diagnosis of Delayed Phase. It is for diagnosing narcolepsy.

SleepingUgly wrote:

jbn3boys wrote:My guess is, if they allow him to sleep until he wakes up (which they said they would), he will have slept enough. The neurologist thinks he has something along the lines of delayed sleep phase syndrome. We'll see. He is just SO tired all the time, that I guess they figure the MSLT is a good option, even though he is not "sleepy", just "tired".

The MSLT has no role in the diagnosis of Delayed Phase.

A Sleep Log might have been a better starting point (if it hasn't been done already).

Unless there were other Signs of the Tetrad.

SleepingUgly wrote: The MSLT has no role in the diagnosis of Delayed Phase. It is for diagnosing narcolepsy.

Yeah, I realize that. And while I highly doubt he has narcolepsy, I am willing to allow the test just to rule things out.

Sleep logs are hard with him, since he is such a light sleeper that if anyone checks on him during the night, he wakes up. So, a sleep log would have to be done by him. And then I question whether or not it REALLY took him two hours to go to sleep, or if he slept during those first two hours, and just woke up and looked at the clock during those two hours.

We've tried numerous things to improve his sleep over the years. Nothing has worked long term. It is TIME to find out some concrete information about how and when he actually sleeps. That's why I readily agreed to both the PSG and the MSLT.

All I know is that my child will not survive his freshman year of high school (starting in two weeks) with the level of excessive daytime tiredness he has been experiencing.

jbn3boys wrote:Yeah, I realize that. And while I highly doubt he has narcolepsy, I am willing to allow the test just to rule things out.

The problem is that some misinformed doctors may rule IN false diagnoses by conducting inappropriate tests or testing at inappropriate times. If he doesn't sleep well for the days going into the study, whether due to a sleep disorder, delayed phase, poor sleep hygiene, etc., and/or doesn't sleep well during the NPSG, he may very well have SOREMS (Sleep Onset REM) during naps on the MSLT. Then what? Diagnose him with narcolepsy?! Minimally, if they find ANYTHING in his sleep during the NPSG, such as SDB or PLMS or whatever, I wouldn't do the MSLT until he's treated.

If you want to read about guidelines for MSLT use, google Kushida at Stanford who has written on this topic.

I presume the doctor has done all the usual blood work to rule out other fatigue causing issues? Thyroid, testosterone, D3? I see you are WI...not a lot of sunshine up that way year round so D vitamin deficiency may be a contributor.

As someone who taught 14 yr olds for years and years, I can tell you that I observed extreme tiredness in boys all the time. I do think puberty is putting a lot of stressors on the body at that time. Growth spurts along with hormones kicking in and, these days.... all the technology the kids are wired to 24/7 must be contributing to even more fatigue. A lot of teens are thought to be in bed asleep by their parents, when in fact they are awake and on their phone texting at 2 a.m. or surfing the net. Not saying this is the case for your son, but it is endemic of the age bracket today.

Good luck with the testing..... hope it all goes well for him.

Generally, for the MSLT, they do NOT let you sleep as long as you want in the morning.

I was booked for a PSG/MSLT last spring, because the doctor suspected idiopathic hypersomnia. We also talked about how I generally stay up later and sleep later, so she wrote specific orders that I was to be allowed to sleep until 8:00. Otherwise, they would have woken me up at 6:00, when they wake up all their patients. So I did the PSG, then they woke me up at 8:00 and took off about half the hook-ups (thank goodness!). I got up and had breakfast. The first nap was supposed to begin at 10:00. The tech came in, and I assumed she was going to tell me it was time to do the nap, but instead she told me that she reviewed my results with the doctor and they cancelled the MSLT, so I could go home.

This is what should happen... If they find any sleep disorder at all on the PSG (or if he just plain doesn't sleep enough hours - I think the standard minimum is 6), then he should be sent home and not do the MSLT. If you only slept 2 hours the night before, then of course you're going to fall asleep quickly on the naps. But it's not diagnostic of anything because you slept poorly the night before. Same as if they discover OSA, or PLMD, or any other sleep disorder. No reason to do the MSLT until the sleep disorder is treated.

cowlypso wrote:I was booked for a PSG/MSLT last spring, because the doctor suspected idiopathic hypersomnia.

There's nothing on the MSLT that they could have seen that would have been diagnostic of idiopathic hypersomnia. The standard deviation for normals is too great.

Glad they realized they should let you go home.

SleepingUgly wrote:

cowlypso wrote:I was booked for a PSG/MSLT last spring, because the doctor suspected idiopathic hypersomnia.

There's nothing on the MSLT that they could have seen that would have been diagnostic of idiopathic hypersomnia. The standard deviation for normals is too great.

Hah? Besides narcolepsy, that's precisely what MSLT looks for:

AASM Practice Parameters wrote:The MSLT is indicated as part of the evaluation of patients with suspected narcolepsy and may be useful in the evaluation of patients with suspected
idiopathic hypersomnia.

Specific Indications for Use of the MSLT
1. The MSLT is indicated as part of the evaluation of patients with
suspected narcolepsy to confirm the diagnosis. [6.2.1; 6.2.2]
(Standard)...

The MSLT may be indicated as part of the evaluation of patients
with suspected idiopathic hypersomnia to help differentiate
idiopathic hypersomnia from narcolepsy. [6.2.3] (Option)
This recommendation is based on data from four articles involving
patients with idiopathic hypersomnia in which diagnostic criteria
were not entirely dependent on mean sleep latency values
[6.2.3]. These papers report a total of 92 patients with idiopathic
hypersomnia with a weighted mean sleep latency of 6.2 +/-3.0 minutes.
This value is intermediate between those reported for patients
with narcolepsy and normal control subjects [6.2.3]. These values
suggest that differentiation of sleepiness due to idiopathic hypersomnia
from the sleepiness seen in normal controls may be difficult.

Identification of normative ranges is limited by the large standard
deviation in mean sleep latency values on the MSLT, as well
as floor and ceiling effects which suggests that values are not normally
distributed. This results in significant overlap between
mean sleep latency values among healthy controls and populations
with excessive sleepiness.

http://www.aasmnet.org/Resources/Practi ... SLTMWT.pdf

While the median values (6.0 - 10.0) may be "difficult" to interpret, that is a far cry from

There's nothing on the MSLT that they could have seen that would have been diagnostic of idiopathic hypersomnia.

Regardless, once you hit "pathological" (< 5.0), then it becomes "easy" to interpret.

TS, MSLT results need to be taken into context. A complete review of the medical record is essential, objective analysis (NPSG) of the prior night's sleep, and a sleep log. As Emilia noted, if this is a typical 14 year-old, the likelihood that this is simply insufficient sleep is strong, and MSLT affirms something that is already known.

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

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....the doctor, whom I trust, has ordered it. So unless it gets canceled based on the NPSG's findings, we will be doing it.

While my son IS a teenager, I am not new to this age group. The tiredness he is experiencing is excessive, above and beyond any I have ever seen in a teen. We saw this doctor primarily for my son's migraine headaches, and how to better manage them. It was the doctor who said his tiredness is "troublesome". I agree.

I guess what I'm looking for is advice from anyone who has "been there, done that"...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), 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.

NotMuffy wrote:Regardless, once you hit "pathological" (< 5.0), then it becomes "easy" to interpret.

And in the references used to define the practice parameters, this was seen in the Bassetti group.

Also, if this one is a DSPS with prolonged sleep requirement ("polysymptomatic form") and they get the MSLT going at 0800 and normal awakening isn't unitil noon, this is going to be one big mess.