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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
CPAPMommy
 
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New CPAP for four year old

Postby CPAPMommy on Wed Nov 02, 2011 6:35 am

My four year old just got her first CPAP a Resmed S9 Escape last week. She is wearing it faithful and in the last week has logged 95.0 hours of run time on machine. Her mask is a full face mask that covers eyes, nose and mouth and does not leak at all. However, her usage hours are showing up as less than an hour. She is sleeping 10-12 hours a night. I check on her throughout the night and she sleeps with a continuous pulse ox so I know that she is receiving therapy. DME company said they fixed the problem after 5 days of trying to get help. Any ideas???? :?

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Ineedanap
 
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Re: New CPAP for four year old

Postby Ineedanap on Wed Nov 02, 2011 7:21 am

I'm glad its working so well for her and she has adjusted to it. Amazing how resilient kids are! I dont have an answer to your technical problem though. Hopefully someone here can help you with that.
I never would have made it without this forum.

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Sheriff Buford
 
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Re: New CPAP for four year old

Postby Sheriff Buford on Wed Nov 02, 2011 8:24 am

Please clarify your post. You say she is sleeping 10-12 hours per night, but her machine is not logging the 10-12 hours? You also stated that you are checking on her during the night. Is she wearing the mask? "Cpap-wise" does everything look ok when you check on her? What problem did the DME fix? You appear to have a machine that will not give you data. You probably still have time to exchange the current machine for one that gives you data. This will help you monitor treatment. Ask about a Resmed S9 autoset or a Resmed S9 Elite. Amazing little girl! Amazing mom, too!

Sheriff

_________________
Machine: S9 VPAP™ Auto BiLevel Machine
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Don't Use humidifier - Autoset Pressure settings: 11cm H2O - 18cm H2O
Last edited by Sheriff Buford on Wed Nov 02, 2011 8:28 am, edited 1 time in total.

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Emilia
 
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Re: New CPAP for four year old

Postby Emilia on Wed Nov 02, 2011 8:25 am

Kids are so good at adapting.... I am unhappy to see you got an Escape model machine as it will not provide you with any information regarding the efficacy of her treatment. It would be nice if you could go to bed knowing you can check the data in the morning and 'see' how her night went without monitoring her all night long. The pulse oximeter is a good addition, but if you are in the 30 day window of having this machine, I'd insist on exchanging it for either an S9 Elite or Autoset which are fully data capable so you can monitor her therapy via the software available to you.

I hope your little one is soon sleeping well and reaping the benefits of good, deep sleep.

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Machine: IntelliPAP AutoAdjust Travel CPAP Machine with SmartFlex
Mask: Swift™ LT For Her Nasal Pillow CPAP Mask with Headgear
Humidifier: IntelliPAP Integrated Heated Humidifier
Software: SmartLink Version 2 Software
Additional Comments: Fall back mask is a Sleepweaver Advance Nasal Mask. Comfort Classic is my third mask, but only if needed.
Yes, that blue eyed beauty is my cat! He is a seal point, bi-color Ragdoll. He is 9 yrs old, and I adopted him in '08 from folks who could no longer care for him. He is a joy and makes me smile each and every day.

CPAPMommy
 
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Re: New CPAP for four year old

Postby CPAPMommy on Wed Nov 02, 2011 12:36 pm

Yes she is sleepin 10 to 12 hours a night with her mask on with no leaking. Everytime I check on her (at least 3-4 times a night) the mask is in place with no leaks. In the morning under usage it says 0.0 and then when it is to calculate times used greater than 4 hours it is always zero. The actual "run time" on the machine is adding up the hours but the usage remains zero. Today she took a 2 hour nap, I slept with her. That mask stayed on her face and under usage it said 0.0 hours. Yesterday the DME had me change a setting under sleep quality. I'm afraid if the insurance or BCMH demands them to pull the data card and download the information it is going to look like the machine is on but not really actively being used. My husband has the same machine and his machine nightly adds up the run hours, also has actual usage hours and when it is used greater than four hours.

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Janknitz
 
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Re: New CPAP for four year old

Postby Janknitz on Wed Nov 02, 2011 12:44 pm

You say there's no leaking, but with a brick like the Escape, there's no way for sure to know if there is leaking, and while the oximeter is helpful, it would be far more helpful to see the AHI and the breakdown (obstructives, hypopneas, and centrals). You can monitor your little one's therapy so much better with efficacy data.

I have a post on my blog at http://maskarrayed.wordpress.com/2011/05/17/help-i%e2%80%99m-stuck-with-a-brick/ with information that will help you advocate for a data capable machine for you little one.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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SleepingUgly
 
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Re: New CPAP for four year old

Postby SleepingUgly on Wed Nov 02, 2011 12:55 pm

I wish I could help with the hours issue, but I don't know anything about the Escape. What mask is she using? My 8-year-old is on CPAP.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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apneawho
 
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Re: New CPAP for four year old

Postby apneawho on Wed Nov 02, 2011 12:56 pm

I was going to suggest to check the Sleep Quality vs Usage setting on the Sleep Menu but you have done that already. I searched older posts on this subject and someone mentioned when they had this same problem there was something wrong with the machine. You may want to insist on getting a new machine and while you are at it, have them give you a fully data capable machine as others have suggested. Read the blog that Janknitz wrote.

_________________
Machine: S9 AutoSet™ CPAP Machine
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: ResMed Climate line tubing, Hose cozy, PurSleep Clear aroma therapy, Using latest version Sleepyhead sofware-thanks Jedimark!
Last edited by apneawho on Wed Nov 02, 2011 1:09 pm, edited 1 time in total.

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Sheriff Buford
 
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Re: New CPAP for four year old

Postby Sheriff Buford on Wed Nov 02, 2011 12:57 pm

I would beg you to call your DME (the company that gave you your machine) and tell them you want a data capable machine. Tell them you want to be able to monitor your daughters' progress on a daily basis. You may have to get your doctor to specifically request the the machine on a prescription, so your insurance will pay. The Resmed S9 Autoset or S9 Elite will provide you leak rates, number of apnea and central incidences, AHI average, 95 percentile or cpap setting. You can take the card out of the machine and download a bunch more information on the computer. You may not physically detect leak rates, but the machine will tell you if they did occur. This is important because if the air is leaking out of the mask and not into your daughter's lungs... improper therapy will occur. Your AHI average should be less than a 5.... and less than 3 is great. If you monitor the leak rate and AHI rate, you can tell if your daughter is getting proper treatment. Without this info you have no idea.

I had a Resmed S8 Escape II. I couldn't get readings every morning, but my DME said they could get the readings if I brought my data card into their office. When I did, they finally admitted that the Escape could not give them data either. I was flyin' blind the whole time. When I told my doctor, he gladly wrote a prescription for a Resmed S9 autoset.

Sheriff

_________________
Machine: S9 VPAP™ Auto BiLevel Machine
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Don't Use humidifier - Autoset Pressure settings: 11cm H2O - 18cm H2O

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Ineedanap
 
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Re: New CPAP for four year old

Postby Ineedanap on Wed Nov 02, 2011 1:38 pm

The data capable machine is a must have. I'm not sure why they keep giving out the old outdated ones. Ok yes I do, money. You are your childs advocate. Make sure she gets the treatment she needs.
I never would have made it without this forum.

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Lizistired
 
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Re: New CPAP for four year old

Postby Lizistired on Wed Nov 02, 2011 1:47 pm

I would skip the DME and go straight to the doctor for a prescription for a data capable machine. There is no way for you to monitor therapy on a 4 year old with a compliance only machine.

_________________
Machine: S9 AutoSet™ CPAP Machine
Mask: Swift™ LT Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Swift FX sometimes, CMS-50F, Cervical collar sometimes, White noise, Zeo... I'm not well, but I'm better.

pianochick
 
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Re: New CPAP for four year old

Postby pianochick on Thu Nov 03, 2011 12:04 am

Is the data card pushed all the way in? Just checking......

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CPAPMommy
 
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Re: New CPAP for four year old

Postby CPAPMommy on Thu Nov 03, 2011 6:29 am

Just checked the data card and it is in the right way. That was a good thought I was hoping! Thank you

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Pugsy
 
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Re: New CPAP for four year old

Postby Pugsy on Thu Nov 03, 2011 10:34 am

Some of the S9 machines would have a firmware problem with data not reporting properly. Various things and seemingly "stuck" on a certain number.

On the off chance that the hours of use data is similarly "stuck". Might try unplugging the machine and waiting a minute or so. Then plug the machine back in. This forces the machine's firmware to reboot. Similar to a computer reboot fixing some problems. It hurts nothing to try. If you do this and tomorrow the usage is still much less than it should be then I would think the machine has a problem and needs to be replaced for mechanical reasons for sure.

This would be a good time to request a full data machine like the S9 Elite.

No way would I entrust my child's therapy to a hours of use only machine (which doesn't seem to be working properly anyway).

_________________
Machine: PR System One REMStar 60 Series BiPAP Auto with Bi-Flex
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: S9 Adapt SV being tried now...not available as menu choice
SleepyHead download site
http://sleepfiles.com/SH/
Pugsy's Pointers Collection (has both software hints and data tutorial links)
http://www.cpaptalk.com/viewtopic/t8900 ... ction.html
Robysue's SH install
http://tinyurl.com/knaqaxh


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