Doc doesn't care to look at data - need advice

[thegivingway]

My sisters son has down syndrome and has been using therapy to treat his sleep apnea for the last year. At his appointment last week, my sister discovered the data card in his machine and asked the doc about it. Doc said the card doesn't have anything useful on it and he doesn't need to look at it. Is there any good info on the card? Should we be finding a new doc?

[timbalionguy]

If the machine is just a basic CPAP machine, then the Doc is right. The only data on the card will be hours of use. What machine is it?

[thegivingway]

It's a Bi-Pap Auto M Series by Respironics

[Bearcat42]

Well in that case the data card for that machine, just like mine, will give you alot of information concerning treatment that the doctor can look at, if he cares to. Personally I would be looking for another doctor.

Many of us have card readers and the software to look at our own data whenever we want to and if possible this is by far the best way to go. But at a minimum the doc should download the data, unless he just has no idea what he is looking at. David

[Goofproof]

Instead of playing guess what I use, let us in on the secret, Model Make, Type, Brand, and someone can tell you if it collects data and what is needed to collect it. jim

Sorry, missed that you posted the make above.

[thegivingway]

How do you use the data to analyze if the machine is working properly to give the full benefit? What does the data show when the machine is doing everything it can for the patient to correct the apneas?

[roster]

How do you use the data to analyze if the machine is working properly to give the full benefit? What does the data show when the machine is doing everything it can for the patient to correct the apneas?

Your first question should be reversed. It should be, "How do you know the machine is working properly to give the full benefit if you don't use the data?" Of course the answer is, "Without data, you don't know if the machine is working properly."

Among other things, the data will show how many apneas, hypopneas, and snores the patient is having and whether the mask is leaking excessively. Prescriptions for the pressure settings done in a sleep lab are seldom optimal and sometimes very wrong. The prescription I initially was prescribed by the doctor left me with an AHI of 32. By working at home with the data from my machine, I was able to modify my pressure settings until I achieved an AHI less than 1.0.

[thegivingway]

What did you see in the data that guides you in the fine tuning process? In other words, what tell-tale signs give the indication that the pressure should go up or down to decrease the AHI?

[Hawthorne]

The signs that indicate a change in pressure is needed, would be the apneas and hypopneas, snores and leak rate that show up in the detailded data reports.

You can actually see them, hour by hour, on your computer if you have the software and card reader.

It's too bad your doctor won't check the card and give you a copy of the detailed data. Maybe he doesn't know how.

If you had the software and card reader to get that data, there are lots of people, here on the forum, who can help you make some helpful adjustments to get better therapy based on that data.

[Bearcat42]

What did you see in the data that guides you in the fine tuning process? In other words, what tell-tale signs give the indication that the pressure should go up or down to decrease the AHI?

I use this as an example: By monitoring your data you can keep track of your leak rate on your mask which can directly effect your therapy. All masks have a certain leak rate built into them in order to take care of exhalation and getting rid of carbon dioxide. The manufacturer puts this information in the user manual that comes with the mask,given as a number. My nasal mask for example has a leak rate of 54.0 yet I average around 53.

Why is leak rate important? I started my cpap therapy using a FFM and I never could get it to seal properly. I could check my data and see in graph form how my leak rate was doing and I knew that my leak rate was too high,by comparing my numbers to the manufacturers numbers. By looking at those numbers I knew I had a problem with leaks and my therapy wasnt the best it could be. So finally I decided to switch to a nasal mask and then checking my numbers. By doing this troubleshooting process I started getting much better numbers and better therapy.

Mask leak rates are but just one part of your total therapy and your data card contains much more information that can be useful in keeping track of your therapy,thus empowering you to take control and do those small things to get the most out of it. The secret when troubleshooting cpap therapy is to make one change at a time. Work on one issue at a time before tackling another. I hope this helps. David

[Slinky]

Perverse ole broad that I am, I would take my data card to my local DME provider and ask that he do a FULL download for me. I would then take that FULL download to the sleep doctor and explain some of the data to him and ask if he felt that there therapy settings were adequate or did we need to make some changes. *wicked grin*

It is easy enough for most people to scan and make those reports available to forum member to get the explanations needed. Just be sure to blank out all identifying information before posting them.

[Bearcat42]

Perverse ole broad that I am, I would take my data card to my local DME provider and ask that he do a FULL download for me. I would then take that FULL download to the sleep doctor and explain some of the data to him and ask if he felt that there therapy settings were adequate or did we need to make some changes. *wicked grin*

It is easy enough for most people to scan and make those reports available to forum member to get the explanations needed. Just be sure to blank out all identifying information before posting them.

Good call Slinky!!!

[Slinky]

As someone wiser than I once said: "this ain't rocket science".

This particular doctor should NOT be treating a Down's Syndrome patient's sleep apnea problems!!!!! In addition to which there may be OTHER sleep problems in addition to OSA.

I'd be INSISTING on a copy of the full scored data summary report w/condensed graphs from both the in-lab sleep evaluation PSG "and" the xPAP in-lab titration PSG and whilst I was at it a copy of the equipment order (script) as well.

[Slinky]

Oh, oh. It just occurred to me: doesn't Respironics make a PLUS model M Series Bi-PAP Auto? Those dang PLUS models don't provide diddley-squat for data except the useless compliance stuff.

If the son's DME benefits are provided via Medicaid ..... it could be a real battle royal to get a fully data capable bi-level.

[Sleeprider]

My sisters son has down syndrome and has been using therapy to treat his sleep apnea for the last year. At his appointment last week, my sister discovered the data card in his machine and asked the doc about it. Doc said the card doesn't have anything useful on it and he doesn't need to look at it. Is there any good info on the card? Should we be finding a new doc?

I'm sure the decision on what doctor to use belongs to your sister. Other than some DMEs and sleep specialists, I don't think most physicians are aware of the data collected by XPAP machines, let alone its interpretation. For most of the people on this forum, data is something they want to see as confirmation/ reinforcement of the efficacy of their therapy. The acquisition of software is nearly always at the personal initiative and out-of-pocket expense of the patient. So, the first step in this process is awareness that data exists and may be useful. The second step is buying and setting up software and learning how to use it and understand it. The third step is working with the doctor to put that information and knowledge to practical use, although many members simply do this on their own.

You have begun step one; awareness, and as you gain more knowledge, you should share it with your sister or direct her to this site. Data can help your sister take an active role in advocating for improved treatment for her son's sleep apnea, and see if there are problems with leaks, or if there are an unacceptable number of apnea events occurring. She can use THAT information to discuss the treatment with the doctor, and even offer print-outs of the data. This can be a very important tool for a patient who may not be able to verbalize or express issues pertaining to their therapy and even qualitatively express how they feel. Understanding how data could help, may help your sister acquire a data capable machine, if she doesn't have one for her son already, and may even let her make the case the software and hardware are an essential medical expense that should be covered.