We got the CPAP machine last night and he slept pretty well. There were a few leaks so I adjusted the mask a few times last night and then at 4 this morning he said the mask strap was bothering him, so I let him take a break for a couple hours, then woke him up to put it back on. I did not want to push im when I know he has sensory defensiveness. Baby steps are good when it comes to dealing with that and the break really seemed to help him. I figure every positive experience he has with that mask will help in creating compliance with using it consistently. He seemd to wake up less groggy and he was more alert. That is a good sign.

He is only on a 6 setting but it makes sense considering he is mostly having hypopneas with low O2 saturations.

We will see if 6 is enough at the next check up. I really like the humidifier feature. He happens to have a cold right now and I think it actually helped his cough too! Win win, right?

You can go to my blog to read more about our experience: http://beingammey.wordpress.com/2008/07/19/starving-for-oxygen/

yemmas wrote:

We got the CPAP machine last night and he slept pretty well. There were a few leaks so I adjusted the mask a few times last night and then at 4 this morning he said the mask strap was bothering him, so I let him take a break for a couple hours, then woke him up to put it back on. I did not want to push im when I know he has sensory defensiveness. Baby steps are good when it comes to dealing with that and the break really seemed to help him. I figure every positive experience he has with that mask will help in creating compliance with using it consistently. He seemd to wake up less groggy and he was more alert. That is a good sign.

He is only on a 6 setting but it makes sense considering he is mostly having hypopneas with low O2 saturations.

We will see if 6 is enough at the next check up. I really like the humidifier feature. He happens to have a cold right now and I think it actually helped his cough too! Win win, right?

You can go to my blog to read more about our experience: http://beingammey.wordpress.com/2008/07/19/starving-for-oxygen/

This sounds great. A cold isnt helping him when it comes to CPAP in the first place, but it sounds like he is marching on.

Way to go

Congratulations on a good first night .  I am so happy to hear that it went well.  Chris only made it 3 hrs the first night, 5 the second and 10 ever since.  He's off to a great start .

To help him out, you might want to make a hose cover.  Chris doesn't like the feel of cold plastic on her skin when she is sleeping.  You can make one out of tube socks, polar flece or anything you have that you can wrap the hose with.  Another suggestion is that when he finds the right place for the straps, that you mark the the proper settings with a marker so he can find them if the straps get undone.

He has the same machine and mask as Chris, but her setting is 4-10, but is usually less than 6.4.  Chris loves her mask and machine.  I hope your son will feel the same way soon.

Susanne and her mini-hosehead Chris.....285 nights on cpap and a lifetime to go......

I'm glad to hear that you're off to such a good start with getting him to use the cpap!!  Way to go!!  I hope that he continues to wear it and that he starts to feel better soon.

Last night was tough, it only being the second night. He had a meltdown in the middle of th enight and was perseverating the the air was blowing on is nose and tickling it making it itch. I don't think his cold is making it any easier. SO, I decided to let him sleep the rest of the night without it. Before he got out of bed this morning, I had him lay in bed with it for 15 minutes and he complied with that, it went ok.

I am concerned about his reaction to the air blowing ON his nose.

QUESTION? Are there other masks that dont cover the whole face? And do they use them for kids?

Thanks for all your encouragement.

http://www.resmed.com/en-us/products/masks/mirage_kidsta_nasal_mask_united_states/mirage-kidsta-nasal-mask-united-states.html?menu=products

I'm not sure if that link will work....  If not, it's for the Resmed Kidsta nasal mask.  It looks pretty nice but it wasn't something that would work for my son so I didn't look into it further.  (he does need a full face mask).  

Don't give up.  It's hard enough to get a child to tolerate a mask/cpap when they're well, but when they're sick it's got to be even harder.  Our pulmo said that 4 hours 5 nights each week was enough for compliance....  If I can get one hour I'll be jumping up and down!!  Anyway, I hope tonight is better.  If not, maybe it would be better to wait until he's well again before trying to get him to keep it on all night.  Is he using a nasal spray at all??  Something to help keep him from getting even more dried out??

Sorry night #2 did not go as well as #1 did.  Don't give up adjusting to a cpap can take a while.  Just keep trying and working with him to get this comfortable for him.  Cpap really can make a difference and when he notices the difference in himself he might be more willing to wear it.

Finding the right mask for anyone can take a while, and for a child it is more just because they are kid sized and there are very few kid sized masks avaliable.  Chris uses the full face mask because she is a mouth breather.  Her first mask was a nasal mask was a Fisher & Paykel FlexiFit.  It was comfortable but she is a mouth breather so it did not work for her.  Her second mask was a Respironics ComfortFull2 and she did OK with that (full face) but she is happiest with the Quatro she has now.  

If the air blowing on your son's nose is the problem could you try the nasal pillows?  I don't know if they make them small enough for a child, but they blow air directly in the nose with nothing blowing on the face.  There is a child sized chin strap avaliable to help him remember not to open his mouth.

I was wondering if you were using the ramp setting?  This would allow the machine to go from 4 up to 6 over time and give him time to adjust to the increase in air movement.  I originally had Chris set for a 40 min ramp so she could adjust to the pressure (8 at that time).  Another idea .....would it be possible to have his machine set over a range so the pressure would only go up when he needed the extra help?  Chris spends a lot of time at 4 but her machine can go up to 10 when she needs the extra pressure.  The machine decides when she is having a hypopnea/apnea and then just ups the pressure until it is over then drops the pressure back to 4 until the next time.

I hope tonight goes well for you and your son, hang in there it will get better.

Susanne and her mini-hosehead Chris