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17 yo Daughter just diagnosed
#1
Hi all,

My name is Victoria and I have a 17 year old daughter who was just diagnosed with apnea. It's been a long journey to diagnosis.

It started two years ago with extreme fatigue. She had antibodies in her blood for Mono, so was told to ease up on physical activity and rest as much as possible. The fatigue got slightly better, but never completely left.

Nine months ago she started having daily migraines. They started upon waking and were constant till she went to sleep. Over time, her fatigue became almost unbearable. Then the nausea kicked in.

She has seen 4 pediatricians and is being treated by a neurologist. She's tried 13 different medications - none successfully treated the headaches - and has just recently gotten her first round of Botox injections to try to treat the migraines. She's a petite person to begin with, but has lost 8 pounds in the last 9 months.

My husband kept talking about a sleep study, but since my daughter doesn't snore, it took a while to get her doctors on board. Yesterday we got the results.

While she doesn't choke, gag or stop breathing, her O2 saturation goes down to 76% while sleeping, pushing her apnea into the "severe" category.

She picks up CPAP on June 8th for a 3 day trail. It will collect three nights of data which will help the doctor determine settings, etc., for the unit she will eventually get.

Any recommendations for mask types for younger/smaller people? Anyone else dealing with teenagers with apnea? Any sage advice for a very confused mom??

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#2
Hi Victoria. You might take a look at the AirFit P10 For Her nasal pillows mask. It's a minimal, light-weight mask. The nasal pillows are detachable from the mask and come in varying sizes so you can get the best fit. The headgear is much smaller than for most masks, and it's a fashionable purple instead of the typical gray.

When you're looking at photos of masks, try imagining the mask on your face, where it will be touching your face and where, if anywhere, you will be able to see it when it's on.
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#3
There is also the Nuance, another nasal pillow style. It does not go into the nostrils, has adjustable headgear, and minimal contact with the nose.

If she opens her mouth to breathe at night, she will need to either train herself to stop that or she will need other mask options. That would be either a nasal pillows/mask with a chin strap or a full face mask.

I use the Simplus full face mask because it has the frame with exchangeable cushion. I only have to change out the cushion, not the entire mask. I have the small and the medium that I switch between, depending on mood and season. I have the Nuance pillows for when I travel or feel like using that.

Besides the mask, the other thing to consider is the machine. Whatever you get, ensure it is data capable. She will want to track the data to make sure the treatment is working. The supplier may try to sell you a cheaper one. Don't settle. http://www.apneaboard.com/wiki/index.php...ne_Choices

Here's some things to get her started (and you by default)
http://www.apneaboard.com/wiki/index.php...=Wiki_Home
http://www.apneaboard.com/wiki/index.php...ical_terms
http://www.apneaboard.com/wiki/index.php?title=Acronyms
https://www.sleepapnea.com/diagnosis/und...g-results/
PaulaO2
Apnea Board Moderator
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.




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#4
Find out what your insurance policy covers, most places you get equipment from will let you change masks for the first 30 days. It is quite important to get a mask that is comfortable and does not leak when sealing to her face.

Do not assume that this will all go as planned, read up on the process (like you already are) and don't just sit by thinking it will be taken care of. Assist the system in getting the best care for your daughter.

For example the June 8th date is mainly waiting for paper to be transferred (prescription) and for your insurance to approve the cost. All of this can be done in one day if need be. Follow up and make sure the prescription has been sent to your equipment provider (DME) then follow up with them to make sure that the approval has been requested, then follow up with your insurance to make sure they understand approval sooner would be better than later. You don't need to get pushy or rude, just help to move things along.
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#5
(05-27-2016, 03:47 PM)Victoria Wrote: While she doesn't choke, gag or stop breathing, her O2 saturation goes down to 76% while sleeping, pushing her apnea into the "severe" category.

That can easily be the cause of the headaches. Very likely it is, since it seems all other possibilities have been eliminated. It must be a great relief to have found this diagnosis, Hopefully she will tolerate the therapy well, but if not persistence will pay off. Many of us can attest to it. Difficulties adapting are worth the effort. It's fortunate that we have these CPAP machines available, just a generation ago that was not the case. The condition just had to be tolerated.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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.
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#6
Hi Victoria,
WELCOME! to the forum.!
I wish your daughter good luck as she starts her CPAP journey and much success to both of you as you go through this together.
Hang in there for more responses to your post.
trish6hundred
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#7
That is a tough age to be, no one wants to be "different". Hopefully she will accept it and feel better. My GP's daughter has OSA but refuses to use "that Darth Vader gear". I would probably have been the same way. No, I definitely would have been like that.
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#8
I'm 20 years ahead of your daughter, but I had all the same symptoms (since teenage years) as yours. So your daughter is lucky to be figuring this out now, rather than farther down the road after decades of feeling cruddy and exhausted which affects jobs, academics, and social life.

Another cause of these symptoms that I've found for myself, and which I believe contributes to my OSA, is Lyme disease. The blood tests come back with over 50% false negatives, so it's really hard to truly figure out (it's actually a clinical diagnosis). Treating my Lyme has helped.
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#9
My kid's migraines diminished considerably when she was using her CPAP.
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