advice for mom of recently diagnosed teenager

[ColoradoMom]

Hello,
I’m a Mom, new to the forum and looking for any helpful suggestions anyone may have to offer.
 
Some history:
About a year and a half ago my teenage son abruptly started having significant problems. He was always extremely tired, began failing all his classes, became extremely depressed, and started having some hallucinations. I live in a small town and took my son to doctor after doctor, but they all believed his problems were purely psychological and didn’t take my concerns about my sons sleep seriously enough. I finally sought medical care out of town, and fortunately we found a great sleep doctor. After actigraphy and a sleep study my son was diagnosed with a circadian rhythm disorder (triggered by travel overseas) and mild sleep apnea. The circadian rhythm disorder diagnosis was a life saver. With a combination of light therapy and strict sleep hygiene my son improved dramatically; he is no longer depressed, the hallucinations are gone, his grades are good, and while he is still tired most of the time, he is not nearly as tired as he was before.
The doctors were not to concerned about the initial sleep apnea diagnosis because it was considered very mild.
His first sleep study was done at about sea level, and we live at 7000 feet so my son’s primary care doctor recommended we do another sleep study locally to make sure the sleep apnea isn’t a more significant problem at elevation. 

2nd sleep study at elevation results:
central apnea index 6.9
obstructive apnea index 0.1
central hypopnea index 0
obstructive hypopnea index 6.8
AHI 13.9
Mean spO2 sleep 90.8
Mean spO2 awake 92.4
Diagnosis: low baseline oxygen saturations and mild to moderate obstructive sleep apnea

The doctors recommendations: immediate follow up with primary care doc, chest x-rays, blood work, echocardiogram, immediate followup with pulmonologist, and they plan to start him on CPAP.

A few questions I have:
The order for chest x-rays and the echocardiogram worried me, are these typically ordered after a diagnosis of mild/ moderate sleep apnea?
Can sleep apnea cause low awake oxygen saturations?
Does the fact that his apneas are primarily central raise any additional concerns?
Any suggestions on questions to ask the doctors about starting my son on CPAP?
Any suggestions on how to help make a teenagers transition to using CPAP as painless as possible?

[Walla Walla]

As a parent I understand your concern. The Doctors I'm sure are running these tests to try and narrow down the cause of the low oxygen rate during the day time. I'm not an expert but I think being at 7000 feet has a lot to do with the central apneas. Hopefully someone else can help you here. Just wanted to welcome you here and I'm sure things will work out.

[Gideon]

I suspect your Dr. is considering an Adaptive Servo-Ventilatin (ASV) Machine because of the Central Apnea.  Before providing an ASV machine they must eliminate a risk factor.  That is a specific Cardiac ejection percentage that is verified with an echo cardiogram.  There is no expectation that this condition exists so do not worry.  

You have relayed the sleep study summary.  If you do not have a copy of the sleep study get a copy of the FULL sleep study to be filed for future use.

Read the links in my signature, they will inform you of a lot about Apnea and the process.

The high notes.  
You want a machine with full data.  We will help with specific models later.
Subsequent sleep studies will be to identify therapy pressures.  Use these as opportunities to try different masks.  Masks are VERY individual and masks MUST be tried on.

Sleep apnea and daytime low O2 sats are completely different.


Fred

[HalfAsleep]

First of all, you sound like a caring and persistent mom. Good for you.

I believe you should welcome the tests. There are many co-conditions that go along with apnea. Not everyone has these, but it’s important to get these sorted out, so they can be treated. For instance, I’ve had all those tests myself, including the pulmonology tests; they all proved negative, but part of my journey on the way to sleep correction.

I’m too much of a newbie to give advice on apnea technicalities and equipment, but there are plenty of advisors here who can.

Also, it might be helpful for your son to find a teenage apnea group online.

[Sleep2Snore]

A few questions I have:
The order for chest x-rays and the echocardiogram worried me, are these typically ordered after a diagnosis of mild/ moderate sleep apnea?

Don't worry about that, they are being thorough and doing a good job, they are trying to find out if there are any problems they should be aware of and not going to hide away after CPAP starts.

Can sleep apnea cause low awake oxygen saturations?

Not directly I don't think, I think he may be slowing down his breathing or shallow breathing without noticing he is doing it.   I used to do this when I think back.  There may be other reasons for this though.  I am no doctor.  Keep an eye on his breathing when he is around and relaxing just to see if he is doing this.  If he is very fatigued it may be causing him a few problems.  But they are on the case.

Does the fact that his apneas are primarily central raise any additional concerns?

It does a little, but they will get this sorted for him.

Any suggestions on questions to ask the doctors about starting my son on CPAP?

That might depend on what they find or recommend.  However, if there is anything you think of write it down and do ask them, there is no such thing as a stupid question when you start Sleep Apnea treatment.  You do need to get it across to your son that he needs to use it every night all night.  

Any suggestions on how to help make a teenagers transition to using CPAP as painless as possible?

For a teenager he might try to not use it, so depending on the treatment, a comfortable soft mask will help.
Most new machines a quiet now, but if you get a choice go for a quieter running one.

But wait to see what they recommend, they are going through the right steps, so listen to their advice, but do not be afraid to ask questions.

[ColoradoMom]

Thank you so much to everyone who took the time to reply to my post! Your insights have helped me gain a great deal of knowledge. While I have no illusions about the difficulty of the path my son is headed down, my mind is much more at ease.This forum is full very kind people and a of a wealth of information, thank you again!

[trish6hundred]

Hi ColoradoMom,
WELCOME! to the forum.!
I wish you and your son good luck with his CPAP therapy and I hope he is able to use the machine successfully.
If he takes an interest in his therapy and is able to make it his own, it will be easier for him.
Do keep us posted on how things go for both of you.