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4 year old daughter... sleep study and CPAP
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shifco Offline

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Machine: Philips Respironics REMstar Auto A-Flex System One
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Post: #1
4 year old daughter... sleep study and CPAP
Very happy I've found this message board and the SleepyHead software. Our four year old daughter has had issue after issue for the last 2 years. Finally after ENT visits, adenoid removal, child psychologists, social worker, and everything under the sun --- we finally had a sleep test done on 7/28.

Looking for any explanations, help, red flags... or simply encouragement after feeling nearly hopeless. Thank you for reading.

POLYSONOGRAPHY RESULTS/RECOMMEND
------------------
Mild but mixed apnea. AHI of 2/hr with RDI of 3/hr (10 central, 6 obstructive). Nadir oxygen sat. 91%. No audible snoring. No positioinal effect to sleep apnea with supline index of 2/hr versus lateral index of 3-6/hr is noted.
Sleep effic. 92%. WASO of 40 min (normal for age). Sleep latency of 11.5 minutes with a prolonged REM latency of 203.5 minutes is identified.
Sleep architecture is notable for reduced REM sleep. 12 minutes of supine REM sleep observed.
Sinus rhthm and sinus arrhythmia observed.
Recommendations: Autopap/Bipap... Concern is significant component of central apnea which is not postarousal in nature.

CPAP FOR LAST 14 DAYS
------------------------
Via SleepyHead. AHI of 8.48.
Over the last 7 days, switched to FULL MASK (previously just nose), and "Clear Airway Apnea" and "Obstructive Apnea" events have skyrocketed.
Last 5 nights (past to current)
AHI 7.15, Hyp 2.5, Obs 3.81, Clear .83
AHI 8.93, Hyp 4.93, Obs 3.06, Clear .94
AHI 19.88, Hyp 2.64, Obs 14.77, Clear 2.48
AHI 12.32, Hyp 2.03, Obs 8.84, Clear 1.46
AHI 22.43, Hyp 1.36, Obs 17.09, Clear 3.89 -- LAST NIGHT

The last three nights have actually been the best in terms of sleeping through the night, leaving the mask alone, etc.. Last night for a 1.5 hr period (22:30-23:40) just TONS of OA events and scattered CA events... one after another.

Not sure what else to include. Not sure about any of this exactly. Just fortunate to find this board and I guess we'll go night by night.

Thanks in advance for any help!
08-27-2013 08:34 PM
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Tez62 Offline

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Machine: Resmed S9 Autoset
Mask Type: Full face mask
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Location: Melbourne, Australia

Post: #2
RE: 4 year old daughter... sleep study and CPAP
shifco, welcome, I'm sure it is very difficult for your daughter to handle CPAP at just 4, we have problems and we are a lot older than that. Why did you change from the nasal mask or pillows as her AHI seem very high, were they better before the change? Her centrals are Ok but obstructives are high, can you check her mask leaks on Sleepyhead and see if hers goes up if there are leaks. Her pressure is very low but most of us on here are adults and may require large pressures to get the results we need. Have you showed her Sleep Specialist the figures since she has had the CPAP? Also it takes a lot of us time to settle down with CPAP and this is going to be a long journey for her, it will be difficult at time especailly as she is growing up. All I can say is I wish my parents and the medical profession knew about sleep apnea when I was a baby rather than having to wait 48 years to find out.
08-27-2013 08:48 PM
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shifco Offline

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Posts: 10
Joined: Aug 2013

Machine: Philips Respironics REMstar Auto A-Flex System One
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: yes
CPAP Pressure: 4
CPAP Software: SleepyHead

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Post: #3
RE: 4 year old daughter... sleep study and CPAP
Thank you.
AHI was alot better with just the nose. We switched because it seemed she was opening her mouth to breath with just the nose mask (nasal congestion/allergies).

Not 100% sure what to look for regarding Leaks on SleepyHead. But here is a screenshot: http:// i.imgur.com/2DIUKya.png (cant post clickable links just yet)

We meet with Sleep Technologist tomorrow... but honestly, I don't have much faith in our medical system. Much of our 2 year battle has been us (parents) researching/advocating/figuring out next steps.

Understand this is a long journey. Thanks again. Need to keep reading regarding SleepyHead.
08-27-2013 09:03 PM
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Tez62 Offline

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Machine: Resmed S9 Autoset
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Post: #4
RE: 4 year old daughter... sleep study and CPAP
What is she like during the day? Does she seem better especially with the nasal mask? I can imagine her mouth opening most of us experienced users can't do it either. Either you are a mouth breather or you are not, you can try a product called a chin strap, they may not have them in her size, it's used for mouth breathers that use nasal masks or pillows but it is another thing she has to wear.
I'm not seeing your image but thats Ok, there are video's on you tube to show you how to understand the Sleepyhead data, your Sleep Technologist should be able to at least read the data and give you an explaination of whats happening.
You are doing the right thing by you daughter and she obviously won't understand it now but will thank you when she is older, when she can life a long and comfortable life all be it using a machine to sleep with.

I'll give you another site in the UK you may want to join, it is free like this one and the lady that runs it has a lot to do with children and sleep apnea, most people on here are more adults but will give you any help and support we can.
There are others on this forun with kids with SA, hope it helps.
http://hope2sleepguide.co.uk
(This post was last modified: 08-27-2013 09:19 PM by Tez62.)
08-27-2013 09:15 PM
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shifco Offline

Members

Posts: 10
Joined: Aug 2013

Machine: Philips Respironics REMstar Auto A-Flex System One
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: yes
CPAP Pressure: 4
CPAP Software: SleepyHead

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Sex: Female
Location:

Post: #5
RE: 4 year old daughter... sleep study and CPAP
Thank you. Behavior has been better and better with full mask. I realize we are dealing with not enough data/time yet. Before the CPAP, she was a walking zombie during the day, always tired, behavior problems, etc.. In the end, I hope this helps another faily. We plan to get "Sleep, interrupted" by Steven Park (book about sleep disorders) very soon.

The image is http:// i.imgur.com/2DIUKya.png but remove the space between the / and the first i. I can't post links just yet. Or maybe try just: i.imgur.com/2DIUKya.png

Thank you for your insight. Will hope to update as weeks and months go by.
08-27-2013 09:23 PM
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Tez62 Offline

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Post: #6
RE: 4 year old daughter... sleep study and CPAP
Dr Park is very good, I have his book, he also has a website, he used to have a webinar every two weeks on different SA issues but they have dropped off lately as he has been so busy building a new clinic
08-27-2013 09:39 PM
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trish6hundred Offline

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Other Comments: I started CPAP in 2008. Totally blind since birth.

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Post: #7
RE: 4 year old daughter... sleep study and CPAP
Hi shifco,
WELCOME! to the forum.!
It is good to see your willingness to research this, so that you can help your daughter and I wish you much success.
Hang in there for more responses to your post and keep up the GREAT work.

trish6hundred
08-27-2013 09:45 PM
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jgjones1972 Offline

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Post: #8
RE: 4 year old daughter... sleep study and CPAP
95% Leaks and Median leaks are low enough that AHI should be close to accurate most nights. Maximum leak rate is pretty high. Leaks are worse with Full Face Mask than were with nasal mask - this is fairly common because the Full Face Mask has a larger surface area to try to seal against.

Does your daughter spend a significant amount of time awake with the mask on?

I wish I could shed some light on what's going on with the AHI, but I just can't make sense of the numbers.

Please let us know what the sleep technologist makes of this.

Sorry I couldn't help, I know this must be very challenging.
08-27-2013 09:48 PM
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PaulaO2 Offline
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Post: #9
RE: 4 year old daughter... sleep study and CPAP
This should help with images issues:
http://www.apneaboard.com/forums/Thread-How-to-Attachments

It could be that there were leaks with the first mask and the AHI was incorrect. Now that the open-mouth issue is resolved and she is getting used to the mask and leaving it alone, the AHI is more correct. If that is true, then the pressure needs to be raised. It is not working at just 4. This could also be why she was opening her mouth a lot, too. 4 really is way low and she may have felt like she was not getting enough air. I'm not surprised the OA events aren't dropping.

The "clear airway" events are fine. If she is using a regular CPAP and that's all her central events are, then I would keep an eye on them but not worry too much just yet.

PaulaO2
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www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-28-2013 10:28 AM
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RonWessels Offline

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Machine: REMstar Auto AFlex DS560TS
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CPAP Pressure: 11 - 20
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Post: #10
RE: 4 year old daughter... sleep study and CPAP
I'll chime in as well to echo what has been said so far.

Most people tend to focus too heavily on Central Apneas because they are neurological in nature, and that is scary. With your daughter, the rate of clear airway apneas is low enough that you shouldn't worry about it. Values less than 5 are considered normal, or at worst too small to warrant treatment. It's the obstructive apneas that are causing your daughter grief.

The phrase "walking zombie", as well as depression and irritability are all symptoms that are probably caused by lack of "proper" sleep.

It is somewhat unusual to have someone so young with Obstructive Sleep Apnea (OSA), but it's not unheard-of. You are probably going to be challenged getting a mask that fits properly, since most masks are designed for adult faces and very few models come in children's size.

I also agree that the treatment pressure probably wants to be increased. This would be a good topic of conversation with your Sleep Technologist. The periods of constantly repeating OSA events are pretty much exactly what happens to me if my pressure is set too low. And it's absolutely murder on sleep patterns. It's virtually impossible to get into N3 (so-called "delta") sleep, which is the really deep restorative sleep phase. Consequently, despite being in bed "asleep" for over 8 hours, she only get the same benefit as perhaps an hour or two of sleep.

We are here to help. Feel free to post any question or concern you might have. We are (mostly) not doctors here, but rather people that have gone through it ourselves and educated ourselves about our condition.
08-28-2013 01:35 PM
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