Newbie here.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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grandmma
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Re: Newbie here.

Post by grandmma » Fri Apr 23, 2010 8:29 pm

Mac33 wrote:Does he still have his tonsils? This is usually common in kids to have enlarged or swollen tonsils causing the apneas.
Interesting and valid question.

My now 6-year old granddaughter had her tonsils out at 4, against the doctor's preference due to her young age, but he felt there was little choice. Prior to the op, she'd had issues with eating food, processing it, and sleeping....she snored shockingly, gasped...and generally exhibited many of the symptoms of apnea. They were HUGE apparently, so no wonder. She was irritable, cranky, short-tempered, you name it.

Now, she's a picture of health. Eats like a horse, active, as easy going as is possible to be when you're a perfectionist, and has plenty of energy. Sadly, her 3 year old brother exhibits the same issues, but he's also really too young for the op.

Probably affects a lot more kids than we realise?
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Ty'sMom
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Re: Newbie here.

Post by Ty'sMom » Fri Apr 23, 2010 8:51 pm

He *does* still have his tonsils. The lady at the hospital (Children's) said that he didn't have any structural issues. However, the lady that came to the house said they may suggest tonsil removal at some point.
Pamela
mom of 15yo Tyler, the one with the CPAP machine

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Froro
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Re: Newbie here.

Post by Froro » Fri Apr 23, 2010 9:12 pm

I had my tonsils out when I was three. Obviously no correlation there on my front. My husband still has his tonsils though. No apnea. Go figure.
These beautiful kids in my avi are my motivation for getting healthy and staying compliant. Need to be around a long time. See my new blog at http://creativekidscakeslife.blogspot.com/ Baking Blog http://feedingtheravenoushorde.blogspot.com

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kteague
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Re: Newbie here.

Post by kteague » Fri Apr 23, 2010 9:27 pm

Hi Ty's mom. I'm the grandmother of a Ty. I just want to reinforce the need to address any mouth breathing or leaking as it compromises the therapy. Also, until his therapy is optimized and you know he has settled down and doesn't move around so much, you might avoid some problems if you creatively find a way to secure the machine. Velcro might help some. If it is sitting on something that allows this, you could belt/strap it down.

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kteague
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Re: Newbie here.

Post by kteague » Fri Apr 23, 2010 9:36 pm

Froro wrote: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.
If you go over to PubMed and search on 'sleep apnea attention deficit' you'll find a lot of articles on the subject.

Froro, do let us know how your son's sleep study turns out.

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Ty'sMom
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Re: Newbie here.

Post by Ty'sMom » Sat Apr 24, 2010 6:20 am

Okay, I have been concerned about his breathing before. I tried to teach him to breathe with his nose (and down in his tummy rather than breathing UP his chest). He's impossible!

So how do I encourage nose breathing at night if he's asleep? I can't seem to control myself during sleep and I seem a lot more capable than he does.

But I'm definitely up for ideas. He did tell the lady that came to the house (I'm sure this woman has a title or a name or something). So hopefully they'll work it out too, but yeah, if you have ideas on how I can teach him to breath right, I'm all ears
Pamela
mom of 15yo Tyler, the one with the CPAP machine

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echo
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Re: Newbie here.

Post by echo » Sat Apr 24, 2010 6:32 am

To encourage nose-breathing, I don't know what training you can do from a physical/physiological standpoint, but I can only reiterate what I said before:

- (daily) sinus/nasal rinse to make sure there's no congestion
- chinstrap to keep the jaw from dropping, or a pap-cap (he can look like a cool biker dude or fighter pilot at night with his 'cap' ): http://www.pur-sleep.com/content/?id=44 (Created by one of our own forum members!)

I had my tonsils out when I was around 10 years old, I'm pretty sure by the age of 15 the OSA symptoms were there full force (mania, snoring/gasping, dreading sleep, waking up with dry mouth). But I also have the small mouth/throat, receding jaw, so it's not always about the tonsils (and adenoids, etc).

Ty'smom: you might also have an opportunity here to help yourself and/or your husband. I'm pretty sure OSA tendencies run in families... think about it.
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park_ridge_dave
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Re: Newbie here.

Post by park_ridge_dave » Sat Apr 24, 2010 6:40 am

echo wrote:To encourage nose-breathing, I don't know what training you can do from a physical/physiological standpoint, but I can only reiterate what I said before:

- (daily) sinus/nasal rinse to make sure there's no congestion
- chinstrap to keep the jaw from dropping, or a pap-cap (he can look like a cool biker dude or fighter pilot at night with his 'cap' ): http://www.pur-sleep.com/content/?id=44 (Created by one of our own forum members!)

I had my tonsils out when I was around 10 years old, I'm pretty sure by the age of 15 the OSA symptoms were there full force (mania, snoring/gasping, dreading sleep, waking up with dry mouth). But I also have the small mouth/throat, receding jaw, so it's not always about the tonsils (and adenoids, etc).

Ty'smom: you might also have an opportunity here to help yourself and/or your husband. I'm pretty sure OSA tendencies run in families... think about it.
Ty'smom,

I have the exact same equipment as Ty. I just got my Pap-Cap a few nights ago. It has helped a LOT

Mask more stable, fewer leaks (less mask shift) and comfortable (as it can be with all the junk on my head ).

And to Echo, I prefer the image of a fighter pilot myself

Best of Luck and Cheers,

Dave

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Ty'sMom
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Re: Newbie here.

Post by Ty'sMom » Sat Apr 24, 2010 10:52 am

We can already tell some behavioral differences.

He used to be SO sleepy. He'd seem lethargic oftentimes, depressed? He'd be hyper or annoying, but it always seemed as a way to regulate the sleepiness, to stay awake. Now he seems to have *real* energy. He's not real sure what to do with it though which makes him a bit annoying still! LOL

Additionally, he got his schoolwork done ON TIME (almost) this week. He's homeschooled so that helps a little. But he has an online writing class. Each week, he's working on the week before still on Tuesday! This time, he got his final completion notice for the 3rd assignment (there are 3 per week) this morning! I'm sure he'll LOVE not having to do revisions all weekend (and Monday)! He's even doing a little planning for some other work.

OH, and he did still forget what I said to take care of this morning, but he remembered enough to ASK me what he forgot. Usually, we just have this back and forth of me telling him, him forgetting, me asking later, him forgetting another part, etc. I really thought it was being bratty and/or lazy, but the fact that we're having some small changes and this seems to be one of them makes me think it wasn't all his fault!

Anyway, today, he's out trying to get some lawns to mow (business cards & fliers in hand, website up, going door-to-door, etc). Hopefully that and swimming this summer will help with the extra energy. He's playing with the dogs more and out hitting balls with dad. He's just a new kid! If it's like this after 3 days, what will it be like after 3 weeks?!?!

BTW, as for family....My parents both have CPAP machines (though my mom no longer uses hers after having surgery on her nose). I had a sleep study and they said I was okay (which seems amazing the way I snore). The hospital did suggest a sleep study for my hubby (he was the one who stayed in the room with my son that night) due to his snoring and sleep behavior. I hope he does one soon!

One question from Tyler: Has anyone lost weight after starting on the machine? He is hoping that he might be able to lose some (or at least just grow into what he has).
Pamela
mom of 15yo Tyler, the one with the CPAP machine

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park_ridge_dave
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Re: Newbie here.

Post by park_ridge_dave » Sat Apr 24, 2010 2:19 pm

Ty'sMom wrote:We can already tell some behavioral differences. ......

One question from Tyler: Has anyone lost weight after starting on the machine? He is hoping that he might be able to lose some (or at least just grow into what he has).
I have about 15 lbs in six (6) weeks. I was 255 and am now 240. My diabetes is under better control also. (OBTW The last time I was a teenager was 1963 ). However, I think no matter what your age is the increased energy makes you capable of more activity. Hence the weight loss. I read somewhere that one side effect of OSA is weight gain. I know that before I started therapy when I got real tired I would eat something to get a little "jolt" (increase my blood sugar). Since I have been on the therapy, I have noticed the following: (disclaimer.. These are anecdotal observations on my particular situation. YMMV)

1.) Diabetes under tighter control.
2.) Energy levels WAY UP
3.) Weight coming down (with some diet modifications & exercise). Mostly through more activity in general.
4.) Mood swings are gone (pretty much anyway )
5.) I am not walking around in a fog.
6.) I remember peoples' names.
7.) I don't doze off At All.
8.) My mental acuity is coming back (I really was afraid that I had early on set Alzhiemer's Disease.)

I know I gave you a lot more than you asked, but I am sure there are more benefits that the other "hoseheads" will relate.

Bottom line..... tell him to hang in there!

Hang around here, learn stuff, and be thankful he was diagnosed early in life so he didn't get so many problems.

Cheers,

Dave (a happy papper)

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Ty'sMom
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Re: Newbie here.

Post by Ty'sMom » Sat Apr 24, 2010 3:03 pm

Thanks Dave,

I definitely think activity is going to be a good thing on this! He's got a spring in his step, he's on the go, he's excited. I don't think I've seen this kid since he was like 7! I hope we can keep up with him!

He'll be thrilled if he can lose a little weight. He gained a lot of weight on some medication when he was 8. We figured he'd just grow into that weight, but it never happened. If it could now (or he could lose), he'd be on top of the world
Pamela
mom of 15yo Tyler, the one with the CPAP machine

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grandmma
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Re: Newbie here.

Post by grandmma » Sat Apr 24, 2010 3:14 pm

Great news Ty'sMom, sounds like real progress. And once he starts seeing how much difference the therapy can make, it's only going to make him more determined to stick with it. Please pass on my/our congratulations on his progress!
"You're just jealous because the voices only talk to me!"

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echo
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Re: Newbie here.

Post by echo » Sat Apr 24, 2010 6:14 pm

Sounds wonderful!! And I'm very glad to see the whole family is (getting) involved!

I'd just like to add a small cautionary note: if after the "honeymoon" period he reaches a sort of plateau or dip, that's normal and all part of the adjustment. He's not being bratty or whatever, but probably needs some "tweaking" to his setup (mask or pressure or something else).
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Jersey Girl
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Re: Newbie here.

Post by Jersey Girl » Sat Apr 24, 2010 6:20 pm

Dear Ty's Mom,

Having a daughter myself, I sympathisize with you and Ty. I am so glad that you are posting on the forum and reaching out. You are being very proactive in helping your son and that really matters. Ty is lucky to have such a wonderful, loving, caring, proactive parent watching out for him.

Sounds like in a very short time he is making great strides. Please, keep us posted on his progress.

Warmly,

Jersey Girl

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gasparama
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Re: Newbie here.

Post by gasparama » Sat Apr 24, 2010 6:38 pm

Ty's Mom,

I am so glad that Ty is getting the help he desperately needs. I teach in an elementary school. There is a student who was started on CPAP therapy in the 4th grade. I was assigned to proctor the administration of the state test on a one-on-one basis because he had spent most of his elementary life sleeping through class. He had been on the CPAP machine for less than 2 months when the test was given. We were all so thrilled when he passed. His teacher was shocked. Now, he's in the 5th grade and is much taller and slimmer. Even though it's difficult to see the young ones having to deal with this inconvenient therapy, I am thrilled to know their lives are going to be so much better. Sadly, the 36 year old father of 2 of our students died this school year due to complications of untreated sleep apnea. Ty will probably adjust to the machine although it may take quite a bit of tweaking. In the meantime, you should be commended for taking such good care you your son.

Jane