Young Adult with Down syndrome, can't find mask that works

(Also, I'll wait till I check the SD card thing before changing the pressure)

How about just asking the doctor to change his prescription to something lower?

Do you have a feel for whether the doctor would be OK with letting you make changes, like gradually increasing it from that set pressure toward the titrated pressure?

avi123 wrote:SU, do you want to tell me that a person suffering from Down Syndrome (DS) could set a CPAP machine, change pressures on it, and may be even use an SD card to check graphs on a laptop?

You were concerned about him getting into the settings on the machine, not about him reading graphs. I'm sure he COULD change the settings, but if he didn't know his way into a clinician's menu, not easily, IMO.

Do you assume that a person suffering from ADHD has the identical limitations as one with DS?

No, I don't think they have the same limitations. My point is that my kid was into EVERYTHING from before he could walk, and he still didn't get into the settings and change them.

Otherwise, it seems to me that you're a sort of a shvitzerit in this case too.

You're called me worse. I'll take that as a relative compliment.

Do you remember when I posted, 2 years ago, that a person's neck size could be used as a possible indication of having OSA, and you gave me hell for posting it. Do you remember it or should I repost it again here?

I gave you hell for cyber-stalking some poor guy who posted on this site, finding a photo of him on his blog, posting the photo to this site, and then making comments about HIS neck size. You never understood what was wrong with what you did, and you still don't. Just as you don't understand what you've said in this thread that is offensive. People here think you deliberately intend to offend. My gut feeling is that is not your deliberate intent. But either way, you do offend.

concerned_sister wrote:

123.Shawn T.W. wrote:I imagine that DME's can not change the pressure, unless they see a prescription for a different pressure, however there is no law that say you can't change it yourself! 14 cm h2o is better than not using it at all! Once he gets use to the more reasonable pressure for a newbie ... You can crank it up a little to help him adjust to the higher pressures ...

This may be the thing to do at this point, but I have to say that I'm still nervous about what could happen if we adjust the pressure (since the DME said they wouldn't pay if we changed it), any idea how I could double check this before adjusting it myself?

Morning CS

I have a friend whose son was prescribed a pressure of 17 also.... like your young guy he could not tolerate the high pressure of 17. His Mom was so frustrated that he was having so much trouble with the DME not allowing her to change anything ... ESPECIALLY pressure . She came to me in tears one morning as her son refused to ever wear that stupid machine again. I took a look at his data and we set up a plan for her (I am not an RT or Doc... just another patient) She set his machines pressure at 13 for a week... and he tolerated it, then we set it at 14 for another week. After the two weeks worth of changes we took a good look at his data again and found that the pressure of 14 was keeping his events below 5.... That all took place last October, today he is still on his machine, sleeps well and has kept his ahi below 5 all on a pressure of 14 When she took her card in to the DME to check, the DME never even noticed that his pressure was at 14....... all she cared about was that he was compliant . I am not advocating that you lower his pressure and keep it there, just lower it for a bit and see how he does, then give it another .5 bump and so on. You may get him to 17 or like my friend found that 14 was his best pressure...... not 17. It is a trial and error thing to get yourself to an optimum place, DMEs make mistakes too as do doctors. If your young guy can tolerate a lower pressure or get it back up to 17 and keep wearing his mask and keep his ahi's down then he will be happy and so will you.
Good luck
Cheers
Nan

concerned_sister wrote:

Janknitz wrote:

As for "auto setting from 12 - 17", his current machine CANNOT be set up that way--it requires an autopap, called an Autoset in the ResMed line. The Elite is a fixed pressure machine--although it will ramp, it holds one pressure once it reaches that pressure. They should have given him an auto in the first place given the complexities of this case, but it would be a big fight to swap out machines at this point (if you're interested in trying see "Help, I'm stuck with a Brick" in my signature below. Everything points to the fact that the DME you've been using is more interested in helping their own pocket than helping your brother be successful at this therapy.

The Fit Life might be a very good mask for your brother, but some people find their head isn't the right shape to keep it leak free--sigh, it's always something. If you learn how to read the data you'll see how much leakage there is and when it typically occurs. It's after the fact, but gives you the opportunity to tweak a little bit until it's just right.

Hang in there--you're doing a great job!

Man, wish we would have started with that other machine :/ I don't mind trying to fight for the other one, but it's exhausting, all this back and forth and who to believe. I guess we'll try the software first, and see what we can do with that, before trying to fight for the other one (at least for now).

And thank you! Glad for all the support here, it's amazing.

Comment,

concerned-_sister, I would be careful about following "medical advice" from chatrooms, including this one, without receiving OKs from your brother's physicians. None of the posters on this private website holds a medical certification. Take for example the above suggestion for your brother to using the Resmed Autoset machine. The poster who suggested it knows nothing about your brother's medical conditions besides the Sleep Disorder and the Down Syndrome. However, it turns out that using this machine, in APAP mode, is contraindicated by the American Academy of Sleep Medicine by patients having certain underlying medical conditions besides a Sleep Disorder.

Who should not use an Auto CPAP in APAP mode:

"3.2. Patients with congestive heart failure, significant lung disease such as chronic obstructive pulmonary disease, patients expected to have nocturnal arterial oxyhemoglobin desaturation due to conditions other than OSA (e.g., obesity hypoventilation syndrome), patients who do not snore (either naturally or as a result of palate surgery), and patients who have central sleep apnea syndromes are not currently candidates for APAP titration or treatment. (Standard)"

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2225554/

I could imagine that your brother b/c of the DS was having one or more of the above contraindications conditions and using the Auto CPAP in APAP mode could have lead to disastrous results, in spite of the good intention by the poster.

Maybe it is just me ... But I'd tell the DME to go pound sand!

However SleepingUgly has a good point/suggestion ... Call the Dr and explain to him/her that he is able to tolletate the lower pressure as it is ramping up ... But, once it hits 17 it is too high to be comfortable, and wakes him up! Which in terms of sleep quality is not so good ... Getting the Dr on board is always good, and explain that you are able to change the setting yourself, so no extra work for the DME ...

In my opinion it is better to let him take a week or even two at a lower pressure, than to have him fail cpap ... Since he can not handle the 17, he is not going to either get any sleep, or he is going to take off the mask and not use the cpap, and sleep with no pressure at all! ... It would be better in my mind that him being able to a getting use to it at a milder pressure even as low as 10, would be better than not using it at all, ever!

How did they ever titrate him at 17? What mask did he use in his sleep study?

The DME's job is to provide the equipment to make this work ... There usually is more than one DME available to chose from ... I had 40, and I called them all! Weeded out most from just talking to them on the phone ... Started with one, but then fired them, as they started playing the power game, and illegally trying to charge me for stuff, I fired them, and found a new one! You are not stuck with just one DME for life!

Call your ins co, ask them what their compliance requirement is? I was surprised that my Blue Cross Nebraska did not have any compliance requirement! They told me basically, it's your life, the Dr recommends this, if you don't want to follow his suggestion, that's your choice ... We are not big brother to check up one wether you follow what he says! Obviously this is not the case with every insurer! I did not do a rental, I bought it out right, with my insurance co (using my money from premiums) paying 80% of the DME inflated price ...

avi123 wrote:concerned-_sister, I would be careful about following "medical advice" from chatrooms, including this one, without receiving OKs from your brother's physicians. None of the posters on this private website holds a medical certification. Take for example the above suggestion for your brother to using the Resmed Autoset machine. The poster who suggested it knows nothing about your brother's medical conditions besides the Sleep Disorder and the Down Syndrome. However, it turns out that using this machine, in APAP mode, is contraindicated by the American Academy of Sleep Medicine by patients having certain underlying medical conditions besides a Sleep Disorder.

Who should not use an Auto CPAP in APAP mode:

"3.2. Patients with congestive heart failure, significant lung disease such as chronic obstructive pulmonary disease, patients expected to have nocturnal arterial oxyhemoglobin desaturation due to conditions other than OSA (e.g., obesity hypoventilation syndrome), patients who do not snore (either naturally or as a result of palate surgery), and patients who have central sleep apnea syndromes are not currently candidates for APAP titration or treatment. (Standard)"

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2225554/

I could imagine that your brother b/c of the DS was having one or more of the above contraindications conditions and using the Auto CPAP in APAP mode could have lead to disastrous results, in spite of the good intention by the poster.

Hate to say it, but on this one I agree with Avi. When my son was on CPAP, the doctor was vehement that APAP was not for young children, and even had a "disastrous" result with one. We can't know what other conditions your brother has that are contraindications to whatever is being suggested. We're good for mask advice, etc., but any changes to his therapy (pressure, type of machine) you should route through his doctor in this case. So far I haven't heard anything to suggest the doctor is incompetent, so give him a chance to field the therapy, machine, etc.

I was always much more cautious about following doctor advice and not experimenting when it came to my son than to myself. I'm a competent adult (presumably), but he's dependent on me to do the right thing for him, and I can't justify not consulting a more knowledgeable person when there is one to consult. In short, get ideas here for what to discuss with his doctor, but then run it by him. If he's no good, get another.

SleepingUgly wrote:

avi123 wrote:
Who should not use an Auto CPAP in APAP mode:

"3.2. Patients with congestive heart failure, significant lung disease such as chronic obstructive pulmonary disease, patients expected to have nocturnal arterial oxyhemoglobin desaturation due to conditions other than OSA (e.g., obesity hypoventilation syndrome), patients who do not snore (either naturally or as a result of palate surgery), and patients who have central sleep apnea syndromes are not currently candidates for APAP titration or treatment. (Standard)"

He doesn't have any of those contraindications, but I don't think I'd change the machine without talking to doctor first (plus they'd have to write it in to the prescription for us to get it anyway). The DME did say that might be an option at this point, but not sure they're very reliably at this point...

123.Shawn T.W. wrote:How did they ever titrate him at 17? What mask did he use in his sleep study?
There usually is more than one DME available to chose from .
Call your ins co, ask them what their compliance requirement is? .

The 17 was just what the sleep study people told us. Apparently we have yet to recieve the actual mask they used in the study, which the last DME rep we saw (we keep going to their walk in hours, every time someone different, and each says we need a different mask/etc.) finally told us. I would switch DME, but haven't found any yet that I'm more confident with then this one yet...

nanwilson wrote:She set his machines pressure at 13 for a week... and he tolerated it, then we set it at 14 for another week. After the two weeks worth of changes we took a good look at his data again and found that the pressure of 14 was keeping his events below 5.... That all took place last October, today he is still on his machine, sleeps well and has kept his ahi below 5 all on a pressure of 14 When she took her card in to the DME to check, the DME never even noticed that his pressure was at 14....... all she cared about was that he was compliant .

This is good to hear!

SleepingUgly wrote:Do you have a feel for whether the doctor would be OK with letting you make changes, like gradually increasing it from that set pressure toward the titrated pressure?

I left a message with them about this, but honestly no real feel for the doctor, since he's had a different one every step of the way, and never one for more then a few minutes. The sleep study sent reports to the family practice (a group practice with rotating doctors), who then wrote a prescription based on what the sleep study people sent him.

Also, clearly I am not yet competent on how to reply to multiple comments at once..... how do you do that?

concerned_sister wrote:no real feel for the doctor, since he's had a different one every step of the way, and never one for more then a few minutes. The sleep study sent reports to the family practice (a group practice with rotating doctors), who then wrote a prescription based on what the sleep study people sent him.

You obviously have to solve the other problems 1st.

But, after things settle down, you need to find him a "Sleep Doctor" to go to directly. That "Sleep Doctor" should do nothing else but Sleep Medicine.

Your situation now is that you are having to go through the Family Practice Group who is trying to interpret information provided to them by someone else. Too many intermediaries!

If your city is of any size at all, there should be at least 1 & hopefully several Sleep Doctors available.

So I think I got a report from the machine now (using the SD card and the software), is there a way to attach a pdf file here?

I don't know of a way to post jpgs here.

Most people do the following to display their graphs:
1. Display the graphs on your screen.
2. Use a tool like the Windows Snipping Tool to copy a portion of the screen image
(leave out any personal info) to a jpg.
3. Upload the jpg to a photo sharing site like photobucket.com. Accounts there are free.
4. photobucket displays four links to the image. Click on the last one (the one with the
IMG tags at the beginning and end.) This will copy the link to the clipboard.
5. Create a new post here. Copy the link into the post.
6. Test the link by clicking the Preview button. In the preview, the uploaded image
should appear.

If you need further details on any of these steps, just ask.

To include multiple quotes in a single post:
1. Create a new reply by clicking Quote in the first post to which you wish to reply.
2. Type your response to that quote.
3. With the cursor positioned to where you want the second quote to be inserted,
scroll down the page to the window where the posts from the thread are displayed
in reverse order. (Most recent first.)
4. Click Quote in any of the displayed posts to display it in your post.
5. You may repeat this as many times as desired.

You may wish to edit the quotes down to display only the relevant parts of each
quote.

concerned_sister, this is a photo from six years ago of my sister's granddaughter with DS.
Her young parents gave her for adoption as soon as they learned that she has DS.
They never saw her.



Oops, wait a minute. It is this one:

if you are concerned about compliance have him wear the mask some during the day. You just need 4 hours a day for compliance. You will get compliance and he will get used to the pressure.

My sister had a mild mental handicap. She married a man who absolutely adored her. She had a good life. Raising children with special needs is a challenge but raising children that are healthy is also a challenge.