Newbie here.

[Ty'sMom]

Hello. I'm a newbie here. I have a lot of reading to do but thought I'd introduce myself.

I'm the mom of Tyler, a wonderful 15 yr old who is currently using his CPAP machine for the first time!

Anyway, basically, he had a sleep study done a few weeks ago. They tried several masks on him that night and let him bring them home. Yesterday, after not being able to reach us (as Ty had left the phone line hooked to the fax machine), this lady came to our house. She brought the machine and a billion masks to try. Good thing because he has a George Lopez head He now has two masks to play with to see which is better (the last one he used at the hospital and the bigger one he chose yesterday). They are both for nose and mouth.

It was very interesting and she's very nice. She's going to call later today to check on us.

Anyway, she said that Tyler was having 94 episodes per hour (after calling 400/night severe!). She said that they will adjust his machine based off of what the machine says he's doing so to get him not having episodes. Right now, it's set at 11 which is what they determined at the sleep study.

Well, like I said, Ty used it for the first time last night. He put it on when he went to bed. However, w hen I went in at 4am when I woke up, it was on his bedside table <sigh>. I woke him up and he was astounded, put it back on and has gone back to sleep. I may have to check on him at first. The sleep study lady mentioned his dancing in his sleep (sitting up, twirling around, etc). Considering he ends up tied up in sheets, on the floor, flipflopped every which way, etc, I've wondered how we're going to keep the machine on him. Guess it may take a little time.

Anyway, so I'm going to read a bit but wanted to introduce us.

Thanks for any advice

[talladega]

Good Morning. This is a great board and you will be able to find answers to most any question that might come up.

It is a shame Tyler has to deal with this at such a young age however many of us lived with this disease for many years and suffered without knowing what was happening to our bodies and not knowing there was help available.

It will be a challenge to adapt to using the CPAP, mask and such but just encourage him to be persistent he too can come to a new place and probably save his health in the long run.

God Bless.

[rubymom]

I too feel sad that you all have to deal with this with him at such a young age. But I'm sure it will benefit all of you in the long run.

Please know that taking the mask off at first (without even realizing it) is VERY common. His body isn't used to it and wants to remove this foreign object that's in the way. Over a few days, he should become more accustomed to it. He might want to spend some time awake with it on. Perhaps watching TV. That will give his body a chance to become accustomed to the feel of it. Some people also try taping it onto his face. The idea here is that when he removes it, the removal of the tape might just slightly wake him up enough to know that he's doing it and can stop himself. Also, his messages in his brain to himself need to be positive. For a few nights, I just had to WILL myself to keep it on and keep going.

Keep asking questions. I know there are alot of people on this board who want Tyler to be successful and will help in any way we can!

You're a great mom for seeking out places to get advice and ideas too! Keep up the great work!

[KatieW]

Welcome Ty's Mom...and Ty. It sounds like this therapy will make a big difference in his life. Please post his progress, and feel free to ask questions. Lots of knowledgeable and generous folks here who are willing to help.

[pdean44]

Welcome to a very infomative and friendly place to get support.

My pressure is also set to 11 but i was tested to be good at 13. Doctor said she liked to start folks low for whatever reason. I expect that to be raised when i go for my review visit soon. My apneas are still high. Dealing with some acid reflux lately which has not been helping me to sleep restfully. You sone will feel worlds better when he gets dialed in. Looking forward to hearing from you on his progress.

[PST]

The sleep study lady mentioned his dancing in his sleep (sitting up, twirling around, etc). Considering he ends up tied up in sheets, on the floor, flipflopped every which way, etc, I've wondered how we're going to keep the machine on him. Guess it may take a little time.

Your son may dance much less (at night) using the CPAP machine. We adjust our posture during sleep to try to keep breathing. My wife tells me that I used to sit up all the time and sleep while swaying back and forth. My doctor told me this was common, because the throat stays open more easily sitting up than lying down. Good luck to you and Ty.

[echo]

Welcome Ty's Mom (and Ty!) !

I wish *I* had been diagnosed at 15 instead of suffering until the age of 29 (which is still young compared to when most people get diagnosed), it would have prevented a lot of damage, so good for you!

94 events/hour is a LOT, no wonder he's dancing in his sleep! I hope the adjustment period goes well and the therapy helps, you may have just saved your son's life and future!

You might want to fill in your son's equipment in your profile -> under User Control panel -> Profile -> Edit equipment
It can help us assist you if you have problems.

A good place to start reading is the CPAP Wiki, under the Yellow light bulb.

Happy CPAP'ing

[KatieW]

I'm on Steven Park's email list and received this notice of interview, on April 27:

Sleepy teens are one of the most ignored groups by the sleep community. Teens are not big children, nor are they small adults. To dispel some of the common myths and misconceptions about teens and why they are so sleepy, I've invited back Stanford's world renown sleep physician Dr. Kasey Li to talk to us about this very important issue.

In this month's Expert Interview, Dr. Li will reveal:

- Why your teen is so tired and sleepy
- Why tonsillectomies don't work all the time
- What happens when children with sleep apnea become teenagers
- What other common sleep conditions besides sleep apnea do you see?
- What are the treatment options for teens with sleep apnea?

and much more.

http://doctorstevenpark.com/sleepy-teen ... r-kasey-li

I thought you and your son might be interested.

[elena88]

Welcome! This is fantastic news that you have discovered a way to help Tyler at such a young age.

YOu have also discovered a wonderful place to get advice and help, which you are going to need along the way..

Now then, about this new contraption Tyler is wearing...

My husband was a jet pilot in the air force years ago.. I had him try on my mask, and he said.. "Yeah, so?"

Tell Tyler, even jet pilots and astronauts have to get used to their masks too.. and if he ever ends up on the space shuttle, or in the cockpit
of a jet, he will be glad he had plenty of practice.

(also, netfix topgun and leave it lying around the house)

[Ty'sMom]

Thanks for the welcome y'all....

For awhile, I've been thinking we needed to do a sleep study, but we just never did so. Another professional finally suggested it. Among other things, they wanted to rule out narcolepsy. I didn't think he had narcolepsy, just extreme daytime sleepiness. They said he did so poorly on the sleep study they didn't even need the narc study. They knew why the kid couldn't stay awake.

Anyway, Tyler didn't seem to have an issue with the machine last night. When I woke this morning, he still had it on. He was still sleeping when I left for work.

One thing he mentioned was that he had to manually remove his tongue from the back of his bottom teeth, his mouth was so dry (his oral motor muscle tone is a bit low--but his mouth was so dry his tongue was stuck to his teeth). He uses AYR for his nose, but is there anything for his mouth? He has the humidifier set at 5.

I'll see if I can find the information to put his equipment in my posts

Thanks again for the welcome!

[echo]

Most likely he is doing a lot of mouth breathing at night, even with full humidity the mouth can dry out real fast. He might try a chinstrap under the headgear to help keep his jaw from dropping and cheeks from filling with air, encouraging him to breathe through his nose. You might also want to check with him on how congested he's getting - a (too) high humidifer setting can make congestion worse requiring more mouth breathing. CPAP therapy works better from the nose too.

[JohnBFisher]

... It is a shame Tyler has to deal with this at such a young age ...

Well better now than have it ruin his health!

... however many of us lived with this disease for many years and suffered without knowing what was happening to our bodies and not knowing there was help available. ...

Exactly.

Ty'sMom, I am pretty certain I had obstructive sleep apnea when I was a teen. My sister complained bitterly that not only did I snore loudly, but I would gasp and snort all night long, just like our grandfather. I'm pretty certain he had obstructive sleep apnea - though no one knew what to call it at the time. And he died fairly young - at about 62.

In fact, I wish I had been diagnosed much earlier. I now have Type 2 Diabetes, high blood pressure and some kidney problems. It's quite likely had this been managed earlier and better I would be in better health.

It's not unusual to take off the mask during the night. It feels unusual. It takes time to adjust to sleeping with a mask.

[Froro]

Welcome Ty's mom!! While not a thrill to have to deal with this as a teen I'm so thankful it was discovered early (ish) for his sake.

Everyone has replied with what I would have said re taking time to adjust to it etc. I think you will find his "dancing" will dramatically drop.

I just want to let you know...We have an appointment with our GP next week for my 14 year old to get a referral to a sleep clinic. I highly suspect he has apnea as well. I can't say for sure because I'm a log now when I sleep so can't stay up late enough to check him.

My guy also has ADD. (mild). I can't point to any studies, or research that says there is a correlation between the two but if it turns out he has apnea I have a hunch there is a link there somewhere.

Anyhow...just wanted to let you know there may be another almost 15 year old in your son's shoes soon. Not that I wish this on anyone for sure but if he does have it perhaps the two could get in touch with each other as they go through this.

[Mac33]

Does he still have his tonsils? This is usually common in kids to have enlarged or swollen tonsils causing the apneas.

[DreamDiver]

He put it on when he went to bed. However, w hen I went in at 4am when I woke up, it was on his bedside table <sigh>. I woke him up and he was astounded, put it back on and has gone back to sleep.

That's not unusual. There are a number of forum members who also remove their masks while asleep, at least at first. Give it time. It's a new thing. Welcome.

My guy also has ADD. (mild). I can't point to any studies, or research that says there is a correlation between the two but if it turns out he has apnea I have a hunch there is a link there somewhere.

Not that I would know conclusively, but agree that it seems likely the ADD might resolve with CPAP therapy if he ends up being diagnosed as needing it.