sleeping better without cpap

ksmom · Post by **ksmom** » Wed Jan 31, 2007 1:44 pm

My 12 year old son has obstructive sleep apnea. Since he started using the cpap he has had problems in waking up or waking up only partially. He also began to experience severe sleepiness during the day. Now that he is temporarly not using the cpap, he wakes up fine, not severly sleepy during the day (he can stay at school all day without dropping to the floor). Because of my concerns for other health issues that develop because of un-controled sleep apnea, I advised hiim to sleep in it again. The following morning he was extremely tired, went back to bed and slept for about 3-1/2 hours. And when he woke up, he only woke up partially. By partially I mean he was up walking around and talking but he was not himself. He spoke with a "lisp" (which he does not have normally) and just sat on the sofa. He became his normal self around 3:00 that afternoon. Anyone else do better without their cpap.

Lyza · Post by **Lyza** » Wed Jan 31, 2007 1:53 pm

I assume he had a sleep study? They found no signs of narcolepsy?

ksmom · Post by **ksmom** » Wed Jan 31, 2007 2:09 pm

He's had the MLST study twice. And each time he fell asleep outside the range to be diagnosed as having narcolepsy.

pedroski · Post by **pedroski** » Wed Jan 31, 2007 3:23 pm

Hi ksmom,

What was your young fella like before he started the cpap treatment? If he's sleeping better without it now, how was he diagnosed? I assume he must have been tired etc before? What did the sleep doc say about this?

Peter

ksmom · Post by **ksmom** » Wed Jan 31, 2007 4:36 pm

The person who'd pick him up from school thought he had "low blood" sugar because he'd sleep in the car. And she couldn't wake him up. He'd sleep for 30-45 minutes. I took him to the doctor who recommended the sleep study.

He never took naps during the day. He has always been hard to wake up after he's fallen asleep. And when he's tired he's unable to concentrate.

His current sleep doctor stated that because his oxygen levels are good he can temporarily go off the cpap. I advised him of the "odd" behaviors while on the cpap. And that once he stopped using the cpap he would wake up alert, go to school and stay all day.

pedroski · Post by **pedroski** » Wed Jan 31, 2007 4:45 pm

Sounds like you're on the right track, if he

wakes up alert, goes to school and stays all day

and working with the doc.

Good luck, they're precious cargo these little uns eh?!

Peter

kteague · Post by **kteague** » Wed Jan 31, 2007 5:11 pm

Sounds like you're in one of those situations where it's difficult to know what to do next, but at least you can systematically do some "rule out" things in regards to your son's cpap treatment.

First of all, can you verify what his settings are? Or you can take it to the provider and ask them to walk thru every setting with you, let you see it with your own eyes, and explain to you why each number is set as it is. It is not unheard of for mistakes to have been made in setup. They are treating a minor child, and you as the parent have a right to know every detail of his treatment.

Is he using the ramp feature? If so, does his ramp pressure meet the minimum pressure requirement for his mask to adequently vent his exhaled CO2? Does his treatment pressure meet that same minimum? Your description of his morning symptoms after using the machine would make me hesitant to make him use it before verifying that this is not the issue, or that he is not blocking the vent in his sleep.

In regards to other sleep disorders, they can go undiagnosed if one disorder keeps waking you too frequently for another to be recorded. If you can get his cpap treatment fine tuned and working effectively, it wouldn't hurt to then have another study to see if anything else has manifested. Your use of the phrase "drop to the floor" was interesting. Do you mean that literally? It sounds like your doctors are trying to find answers if they've done an MSLT twice. If it were me, I would thank them for their diligence thusfar, and ask them to not stop until there are definitive answers.

There is another mother who is a regular on this board with a young son on xpap treatment, although his diagnosis may not be exactly the same. Her screen name is Rustynail, and she might be a good person for you to talk with Mom-to-Mom.

Best wishes on sorting this out for your son. He's blessed to have a mother like you who is seeking help for him. Keep moving forward.

Best wishes.
Kathy

ksmom · Post by **ksmom** » Wed Jan 31, 2007 5:14 pm

Thanx Peter...I certainly hope so!

CollegeGirl · Post by **CollegeGirl** » Wed Jan 31, 2007 5:18 pm

To be honest, I'm not sure if what you're describing is sleep apnea or not. But, as somone who probably had it at that age, I can tell you that it catches up with you by your junior and senior years of high school if left untreated. He needs to be treated now (if he does have apnea) or, if he's like me at least, when he reaches the end of high school he will no longer be functional - he'll just want to sleep ALL the time. That will ruin his grades, and keep him from getting into a good college. Don't let that happen to him.

If he does indeed have apnea, make sure he uses his machine all night, every night. You won't start seeing real results from it until he does. Make sure you talk about the mask with him - getting him a comfortable mask is the most important thing because that's what's going to allow him to keep it on all night.

Good luck.

ksmom · Post by **ksmom** » Wed Jan 31, 2007 5:50 pm

Thanx Kathy! You brought up some good questions. I only know is his cpap is set on 11. I will follow up with his doctor. And yes he would just drop to the floor. When it first happened, I thought he had tripped over something.

ksmom · Post by **ksmom** » Wed Jan 31, 2007 5:52 pm

Thanx CollegeGirl! I'm very concerned about him just getting through the 6th grade.

Sleepy Dog Lover · Post by **Sleepy Dog Lover** » Thu Feb 01, 2007 12:42 am

I wonder if he is getting central apneas with the machine instead of obstructive apneas. Perhaps another sleep study is in order.

blarg · Post by **blarg** » Thu Feb 01, 2007 12:56 am

I believe I was born with my OSA. In 5th grade I slept through a Saturday. (Went to bed on Friday night and woke up Sunday morning.) My parents tried to wake me and couldn't. My parents thought that was just part of who I am.

By the time I got into college, I was sleeping 12+ hours a day, and couldn't function on less. Even with the 12+ hours, I was rotating through schedules (circadian rhythm weirdness thanks to the OSA) and I found it VERY hard to even cope with class.

It's difficult to tell what's going on given the information you've posted, but if the doctors say he should be on a CPAP and that's genuinely not working for him, it needs to be brought up with the doctors. There are dental devices, other machines, other diagnosis, etc etc etc. You're on the right track by realizing that what he's going through isn't normal and needs to be adressed. Best of luck.

CollegeGirl · Post by **CollegeGirl** » Thu Feb 01, 2007 1:05 am

Wait, he just drops to the floor asleep? No way is that sleep apnea. In my worst stage of it, I never did that. I'm not familiar with sleep disorders, but that sounds an awful lot like narcolepsy to me. Do his docs know he does this? In my humble opinion, they really need to retest him.

blarg · Post by **blarg** » Thu Feb 01, 2007 1:09 am

CollegeGirl wrote:...that sounds an awful lot like narcolepsy to me.

Cataplexy and Narcolepsy aren't always one in the same, but still... It doesn't sound like only apnea, at least to me. And, of course, it might not be sleep apnea at all.

I guess my point is that these concerns need....NEED to be discussed with the docs.

sleeping better without cpap

sleeping better without cpap

Son's cpap treatment