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Lack of progress and getting worse.
#1
My 17 year old son was diagnosed with OSA a bit over a year ago. Had been using CPAP for nearly a year. First night was great 5 hours, then from there got worse. Now he gets about an hour a night.
He goes to sleep every night with the mask on.
Every morning it is off
If I am able to I check after about 50 minutes to an hour and put back on, as always off.
At diagnosis his AHI was 22
Had another sleep study.
AHI now 29.9 and he is having significant CSA events. We have been told his pressure band is narrow and if he is out of this he is having the CSA events. (Using CPAP) Longest apnea event was 47 seconds.
They recalibrated his pressure but he is still pulling it off
We have also tried hypnosis, but that does not seem to be helping.
He is repeating year 12 next year as he is not able to handle school at the moment and been diagnosed with Conversion disorder. He is now on anti anxiety meds. The hypnotist said his sleep apnea has been waking him d=for years, and his only anxiety is that he stops breathing in his sleep and that scares him. (which makes a bit of sense)
They are saying if the change in pressure does not work he will have to try an Adaptive servo ventilator.
His conversion disorder diagnosis is due to his balance issues, he goes through periods you would swear he was drunk. He staggers and stumbles and falls.
I still believe until we get his sleep under control he will not get better, as I think the lack of effective sleep is affecting his cognitive ability, his ability to cope and his stress levels.
GP agrees with me on this one
Gp has also asked up to see an allergy specialist to rule out allergies, though the ENT saw no sign of inflammation. Basically we are willing to try anything,

As parents we are very concerned. We had a great young man, with a great sense of humour, big ambitions and a great work ethic. He managed to attend 3 classes in term 3, and school 2 times a week but was sent home on all but the 3 occasions as he was not safe to be there. (due to chance of falling)
Frankly any insight would be great,

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#2
Let's get some important details. What is the brand and model of the machine he is using? What are the settings? What kind of mask? It is important to give a young person ownership in the treatment, and the best way to do this is through the software. Using the free SleepyHead program, he can troubleshoot his therapy and see why it is failing. Looking back at your post history on this, your son did not have a titration study. No one knows what pressure is best for him, or if he may be prone to complications from CPAP.

If CSA is a significant problem, it is very likely he is getting the wrong treatment on CPAP. This would explain his removing the mask and being too uncomfortable to continue therapy. CPAP can make CSA worse, and can even cause mixed and complex apnea in people with this problem; a conditions known as CPAP induced apnea.

If his machine is compatible with the software, we can help you get started in understanding what is happening so you can explain it and start turning the control over to him. He is 17, and you can't "make him do it". it must be his choice, and getting him involved through observing and improving his own data will be more motivating than anything you can do by begging, pleading or prodding. You are right to be concerned, and yes, this can affect his life, health and success. The approach to making him the master of his therapy and future may be key. The first step is to swipe the data and see why it's not working.

You don't have a very good record of replying to threads on this forum and providing useful information to let us help you. Please for your son's sake, answer my questions. If his machine produces data, I will gladly help you to get important information you need in order to take the right next steps.
______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
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#3
When I was initially diagnosed with a mixed central apnea (combination of central, then obstructive apneas), I was put on protriptyline (brand Vivactil). This helped me a great deal. It is classified as a tricyclic antidepressant, however it also prevents you from going so deeply asleep that you don't breathe.

Another tool which may be of help to your son is learning 1 or more relaxation/stress management techniques to use. One simple one is described in Herbert Benson's "The Relaxation Response", which also describes what happens to the body under stress, and how the basic breathing technique is helpful. While this won't cure the problems he is having, it may help him cope with them.
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#4
Sorry I can't help, but I wish you all the best, and know there are some great people here that ca and will help you if you let them.
If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
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#5
Currently on a Fisher and Paykel Icon Premo, with a Resmed Airfit full face mask. He has tried other masks and hated them, and hates the nose only ones even more. His pressure has been currently set to 9, prior to that it was 7.5. It was changed when he had his last sleep study. His first one had no CSA at all.

The sleep specialist has told us the CPAP is the cause of the CSA, and that our son has a really fine line of tolerance on the CPAP basically 9 to 9.5, anything out of that he starts having CSA events.

We see him again later this month, the appointment we found all this out at was the morning after the last sleep study.

Will try to download the program tonight have been unsure about it as the sleep clinic has been reading the data. Does it wipe the data from the machine? Mind you the data they had from his one hour a night and the data we had from the sleep study were very very different. We were told by the sleep clinic he was down below 2 AHI in the hour he was using it.

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#6
Oh and my son is very compliant with the machine. He owns it. If we travel, it is the first thing packed. He puts it on almost every night (has missed once I know of in the last few months when he fell asleep before he put it on, he felt really bad the next day, and told me) He also goes to sleep very very quickly. He turns his laptop off, puts on the mask and is asleep in under 5 minutes. The specialist mentioned it as he said using the ramp up feature would be of no benefit due to this and may be detrimental. The only thing I do is try to check him about 50 minutes to an hour later to see if his mask is still on. If I check earlier he is asleep with it on, later it is off. He may like the data as he is a science nerd. He also likes to read his specialist reports. Not in a hypochondriac way, but in an I am interested in what is going on way.
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#7
Hi Pudel,
WELCOME! to the forum.!
It's great to hear that your son is very interested in his CPAP therapy. SleepyHead will help him to see what is really going on with his sleep.
I wish your son good luck on his CPAP journey and getting it fine-tuned to better help him.
trish6hundred
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#8
The Fischer Paykel Icon is supported by SleepyHead, however it is described as a work in progress. It's far from ideal in terms of helping you figure out the efficacy of his treatment and the types of apnea he may be experiencing. If you ever have that chance to change, the Philip Respironics or Resmed would be a lot better for that. It's a shame that someone who didn't get a titration study, also doesn't get a machine that can help them optimize or troubleshoot the treatment; especially someone potentially affected by CPAP induces complex apnea.
______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
Reply


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