I agree it can be tough to get a general doctor, like a pediatrician, to focus on sleep problems.  I must have told my daughter's doctor 7 or 8 times that L wakes up gasping in her sleep before we were sent anywhere.  So you can start there, but if you can't get any attention that way, most major cities now have good sleep labs in hospital and outpatient settings.  There are suggestions in other places on this site about how to find a good doctor -- see if you can find what you are looking for.  

Curious: Our sleep doctor's primary credential is otolaryngology, commonly called ear-nose and throat.  He knows a lot about sleep problems, but the other ENT's we had consulted along the way were pretty clueless about it.  For instance, one refused to believe my daughters acid reflux could have anything to do with obstructive apnea since her apneas are mostly central, so she just told us to elevate the head of her bed and deal with it.  So it seems like training and involvement with sleep disorders is not evenly spread around in the medical community.

Good luck finding a good doctor and some help for your son.  There are few "quick fixes" in Apnea-land, but lots of reasons to hope life can be better.

Thank you!  I did bypass his doctor and called U of M in Ann Arbor. They have a sleep clinic.

L. Falsetti

L.falsetti wrote:

Thank you!  I did bypass his doctor and called U of M in Ann Arbor. They have a sleep clinic.

L. Falsetti

I take it you live in Michigan then...the sleep lab in Grand Rapids- also has other location throughout west Mich- also treats pediatric sleep disorders, just in case AA is further from you. Not all sleep labs will/can/should work with kids so its important to have a specialist who has experience in pediatric sleep disorders.

I'm 21 and have been diagnosed with severe apnea (82 episodes a night).  I'm not overweight, I don't drink like your average 21 year old.  I have probably have had OSA for years, but my girlfriend made me get tested after seeing a comercial on tv.  to make a long story short, i went from being a B- student to a A+ student over the summer after starting cpap.  i didn't do anything different in regards to my attiude towards school, but i found i was able to study for hours straight without losing focus or the urge for breaks. the mask was an uncomfortable pain at the beginning and embarrassing when i had friends over, or went on trips with them, but hey, you have to get used to it.  I found it was well worth the uncomfort.

 - Mitch -

Hi Williebear,

Getting use to CPAP therapy really has two components, working out any physical discomforts with the mask, airflow, etc. and a psychological component that for many people has to be overcome.  It is perfectly appropriate to get the mask and pressure issues worked out and that should help a lot.

Help her understand that she is not being forced to breath.  It is not a respirator which actually pushes air in to expand lungs.  Her CPAP is actually very benign, it is simply providing an "air splint" allowing her airway to remain open both when she inhales and exhales.  It is pretty cool how it works, upon inhalation, the airflow opens up the windpipe.  When she exhales, her exhalation pressure meets the incoming pressure from her CPAP and that is how the "air splint" is formed.

Tell her to try not to fight it.  She doesn't have to do a thing except breath slowly, and relax.  Relaxation techniques or listening to music might help as she is using her CPAP.   I get comfortable, which included positioning my cats around me.  Anything to take the focus off her CPAP.  Try to get her to see her machine as a friend there to help her, give it a name, make it part of the family.

Another part of her frustration I feel is her disappointment at failing.  Tell her that it is OK and take the performance anxiety off.  She is not failing and needs to give herself a break. She is doing the best she can with her current knowledge and let her know that your and she will learn all you can and take the steps necessary to work it out.  Tell her you are proud of her for all that she has gone through and how hard she is working on this.

In a nonthreatening gentle way, remind her of the list of scary effects of untreated OSA.  I'd start with weight gain, something a teenager might pay attention to.  Decreased short-term memory, fatigue and loss of energy to do all of the things a teenager likes to do.  Irritability (not good on friendships), falling asleep in class and anything else you can use to get the attention of a teenager, plus eventually, an eventual increased risk of heart attack and stroke.

As far as her gastric reflux, does she sleep on a wedge?  Sleeping with one's head elevated works wonders and I assume she is already on meds. for her GERD.

The ASAA sponsors A.W.A.K.E. groups.  These are support groups where you can go for face-to-face support.  There might be a kid or two there.  Knowing there is company in your misery can be of great help.  To find group in your area, go to the ASAA home pate (link at the far left directly under the forum title).

The next sleep study she has, have her take everything that she wants to the study so that she is comfortable in the room.  Favorite pillows, stuffed animals, etc.  The only thing they wouldn't let me take was a live cat.

She may be also thinking about the impact a CPAP would have on other aspects of her life, camping, sleepovers, etc.  Well, it really doesn't get in the way.  There are ways around everything and you can come back here and ask as they come up.

I guess all of this post can be summarized by saying that with time and your help, she will get it worked out.  She needs to work on patience and a forgiving attitude towards herself.  It just may take awhile and you have to address each issue one at a time and step-by-step.  And, give L a big (((((((L)))))))

Keep us posted!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Sorry, I just saw your reply today.  For some reason, I did not get the e-mail telling me there was a reply, so I have not been checking.  Thanks for caring enough to write -- it means a lot to me.

The past 6 weeks have been really, really difficult around here.  L has gone "one step forward, two steps back" in her use of the Bipap.  Once she gets over fighting bedtime and settles herself down, she does fall asleep with it on, but pulls it off in her sleep (including turning off the machine, so the patient disconnect alarm does not go off).  The DME says there is no way she could do that without knowing it, but I think she has operated in some kind of twilight land of half-sleep for a long time and it does not surprise me at all that she would figure out how to remove something that is bugging her.  

She has tried lots of different things to help her relax -- music, playing her guitar, reading, coloring (!).  But every time, she finds something that is wrong with that approach, so she decides it doesn't work.  I think she gets into bed and starts thinking, This had better work, I have a biology test tomorrow and then play practice, and I'll have to deal with some difficult people there, and etc. etc. etc. Her mind just starts racing, all connected to how badly she wants the machine to "work."    

She has had, in 6 weeks, 3 nights in which she has kept it on for more than 3 hours.  Once, she went almost 7 hours.  But, each time, the very next night was terrible and she could not wear it at all.  I think she is expecting to feel great (lots of people have told us they feel great after sleeping with their Cpap) but I think she is going to need a month of good nights before she recovers fully.  This disappoints her so much that she puts too much pressure on herself the next night, and that does not work.  

She has a real fear of sleep, but refuses to see a psychologist.  I have not insisted yet because frankly I am sick of running around to doctors (as we have done for the past 3 years) and finding little relief.  She says "Oh great, now you think I'm crazy, too."  

I never thought we'd have such a rough time with adolescent issues with L; she is very sweet natured, very eager to please and to succeed.  I have done everything I can to keep this Bipap from becoming a power struggle between us, but I almost get the feeling she wants to me "force her" to wear it so she can make it my fault when she gives up completely.  I am worried becaus her attitude toward school, socializing with friends, etc. has really taken a dive.  I think she is deeply disappointed with herself and with all of our so-far futile efforts to make her healthy.  

She has not worn it at all for the past 3 nights.  I just keep patiently cleaning it out each morning and setting it up at night, and trying to encourage as best I can.  

We did go back to the sleep clinic for a follow up visit last week; they confirmed the machine is working right and the fit of the mask is good.  They encouraged her that it might take months to get fully adjusted.  They also suggested a dose of melatonin at bedtime for awhile, to help with the anxiety about going to sleep.  This definitely makes her sleepy, but it also makes her feel sad, so we have to talk and talk to get over that at bedtime.  

I will check to see if there's a support group in my area.  She is sure she is the only young person going through this.  We know several people who love their cpap -- they are all "old men" in her book.

hello there i hope u dont mind me posting to u, but u seem more glued up on this than me

my son is only 15 months and has just been diagnosed with central sleep apnoea, hes had 2 sleep studies which has showed apnoea, and 1 ALTE 2 weeks ago,
hes o2 levles didnt drop to low while having these episodes, one night while we was in hosp he bretahing rate was between 0-6 bretahs a minutes and needed help bretahign again by the nurse

we r now awaiting a MRI under GA, a sleep EEG, hes had 3 day time EEG and all been clear

no one has said at the mo what type of help would be availbale to matthew

do u ahev any advice for me, sorry i know u came here looking for it, but i could do with some

thanks
natalie

Sorry to be so slow in reply -- we changed e-mail servers at home and I did not get the message that a new post had come in.  

Sounds like you are doing the right things, getting the right kinds of tests for Matthew.  Apnea can be very difficult to sort out sometimes, so don't get discouraged.   There are a number of things your doctor will want to rule out, which is why so many tests are needed.  

This forum has lots of good advice, I also went to my public library and did a search under "sleep disorders" and read everything I could get my hands on (and that seemed layperson-friendly).  I learned a lot this way, and also learned to be a good observer of my child, so I have good questions for our doctor and good answers for him each time we go in.  

Has your child been placed on CPAP at all?  Seems like that would be a good course of action, even while other tests and scans are going on, just so he is breathing at night and you can sleep a little easier, too.

I just sat and re-read this entire thread, all the way back to my first posting in July, 05.  L has been trying to adapt to BiPap for more than 4 months and she still just hates the machine.  In fact, last night may have been her last try.  She is so upset and anxious about using her BiPap that she is not able to sleep with it at all anymore.  Part of her wants to just quit and forget all about it, and part of her would be so disappointed in herself and in the machine.  Her dad and I are also deeply disappointed, because we really believed the BiPap was going to help her, and because there is really no other alternative.  I cannot express how hard this has been as a parent, to watch your child struggle with something this difficult, that should be so simple -- getting a good night's rest.  

L's symptoms have abated a bit; she is not having as much trouble with acid reflux or the crossed eyes as before.  She's wearing reading glasses that help with that.  She still gets stomach aches but thanks to all the gastro testing we did last spring, she knows there is nothing organically wrong with her stomach.  So she doesn't get as worked up and anxious when she feels a stomach ache coming on; she just takes a Tums and goes on with life (isn't that what we all do?)  So that has actually helped the stomach problems to be less prevalent and less severe. she has even weaned herself off the Prilosec and Pepcid.  The swallow study convinced her she does not have a bad swallow reflex; she just needs to take smaller bites.  So some things are getting better.

But the fatigue is still a dominant feature in life.  I still hear "I don't feel good" over and over, even though she is not sick. She still fears and avoids sleep, has trained herself not to nap.  Interestingly, I realized lately that she does not even yawn anymore -- I'm not sure what that means.  When I listen to her sleep, I hear these L--o--n--g intakes of breath -- I just can't believe how long she keeps breathing in, in, in.  It's a mildly occluded sound, so I'm guessing she is not getting a lot of air, but it sure is long.  Then she breathes out in a rush, there's a long pause, then another long breath in.  It is so ragged and uneven sounding.  I know she needs the BiPap but she just cannot accept it.  

Maybe when she is older??  I certainly did not have good emotional control as a teenager so I don't know why I expect her to be able to achieve this level of mind-over-matter.  We have decided that surgery is not an option (nobody is suggesting any to us, anyway) because they sound very painful and can actually make things worse, I've read.  I could deal with a tonsillectomy but our doctors did not want to do it back in 2002.  If she wants to try surgery when she's an informed adult and can make up her own mind, then she can do that.  But I won't have her saying "My parents made me have this surgery and it made my problems worse."  Meanwhile, it is the pits watching my bright, talented, used-to-be-interested-in-everything teenager mope through life with no energy.  Her teachers last semester were all great to her and nobody gave her a bad time for falling asleep in class, but now I have to "train" the whole batch of second semester teachers.

Thanks to everybody who has offered their advice over the months.  I'm sorry to say we have just not been able to make this work.  I just cannot force her to do something that she hates so much.  We were all in tears tonight as we discussed bringing the machine back to the DME.

I don't know if anyone is still psoting on this but I thought I'd give it a try... I'm 16 years old and also have sleep apnea so I know what your daughter is going through, I gave up using my cpap machine more than a year ago because I had similar problems with it. Earlier you had asked if there were any more teens with it so I thought I'd reply...

I am the mother of three children who have had central apnea.  Our oldest outgrew it when he was 2 1/2 years old so we were able to get rid of the apnea monitor then.  Our daughter spent the first night of her life in intensive care and had central apnea.  She was able to go without a monitor at one year of age.  Then our third child came along and he is 15 and is still on an monitor.  He was on oxygen from age 2-14 when he seemed to be doing better.  However, in the fall of 05 he grew extremely tired and lacked energy more than ever.  He was put on a bi-pap in January.  We are still adjusting to it.  He also has asthma and neurocardogenic syncope along with various stomach problems. He has maintained a good attitude and still stays involved in school and church activities.  However, it has not been easy.  We still don't know what is wrong with his stomach even though he has had tests and will have more in April.  He also has muscle and joint pain.  

Tell your daughter to hang in there.  I have no answers except to make life as normal as possible and put your faith in God.

Peaches

I just thought that I'd post something too. I am 18 years old and was diagnosed with severe sleep apnea a year and a half ago. We believe that I have had sleep apnea my entire life. As an infant about two or three days old I would sleep for 10 hours straight wake up to eat and go back to sleep. I was constantly sick throghout my childhood and cpap did cure that I've only had a couple of colds. I also had a SNAPP mask and wondered the same thing about the nose being stopped up but when I tried to use it anyways I got well faster. I don't know if you are still using this forum or if your daughter is still attempting the bipap machine or not. I know you said that mask was good for her but I do have to say that personally I could not stand the straps. I found a mask online called cpap pro. I was concerned with the fact that I would have something like a mouth guard type thing on my top teeth and about mouth breathing because during my sleep study I had to wear a chin strap. It was amazing the difference I saw. I had braces when I was younger as well and had a retainer for a while afterwards even though I was not nearly as good about using it as I should have been. Anyways my point is with SNAPP I would get frustrated and pull off the mask too and turn off the machine like you described your daughter doing without remembering it in the morning. I don't know if it would help her I know that the air comming in was definitely overwhelming to me at first too but after just lying down and relaxing it started to feel natural. I'm sorry your daughter is having so much trouble adjusting to the machine. But as someone other than an "old man" I want to say not that I love my cpap machine because if there was away for me to get rid of it I would. However, I would never give up the life that it has given me my grades have gone up, I have been able to stay up later and socialize much more actually being awake during the day not so tired and depressed. It took me atleast a week or two to see results after starting cpap guess that was playing catch up for 17 years. Well I just thought I'd say hello from an 18 year old who has had to explain to many close friends what that machine in my bedroom was. I just started college and did not want to use the machine at first but started sleeping through classes and realized I didn't have a choice. I am lucky to live in dorms where we each have seperate bedrooms and I still have not told anyone at my new school about sleep apnea not even my roomates they never asked what that noise was which made me extremely happy that it did not bother them. Well if your daughter would like to talk to someone else going through this she can reply back on here or private message me or something. I have not met anyone else who is a teen with sleep apnea either but I had awesome friends and family and a very joking personality. Personally I just kinda joked about it with my closest friends and some family I do not refer to it as my sleeping disorder and think of all the negative stuff that goes along with it but when they want me to spend the night and something really important is going on the next day or I am just extremely tired I tell them no and joke around by saying that I need to actually breath that night. I still have a hard time using cpap around others and do stay over at friends without the machine sometimes even though one told me once she likes it better when I use the machine because my snoring is louder than the machine. Well I guess I've said enough don't be shy about talking to me though I think it's kinda interesting meeting other teens with sleep apnea.

dont know if ur still about but im wondering how ur daughter is doing now?
has her apnoeas improved?

natalie

this string helped me so much.  You have voiced the struggles that our daughter and family has been going through since last spring.  I hear that these struggles are very common in both adults and kids.  It's not natural to have something covering our face when we sleep!
I pray you and your daughter find answers.  Gratefully, snakegirls mom

Thank you to everyone who has been reading this strand and asking about my daughter.  To be honest, I have not logged in to this site or read replies for several months.  L is now 17 and a junior in high school.  We gave up on the BiPAP back in January of 06.  She had another overnight sleep study (her fourth) in September and she had 50-something "events" per hour.  These were not all full apneas, some were just partial occlusions.  They tried CPAP again for the second half of the night and, again, she was not able to tolerate the machine and sleep quality was terrible.  But at least the doctor now agrees with us, that she does not tolerate CPAP, as evidenced on three of the four sleep studies.  

The sleep doctor had scoped her upper airway with a tiny camera twice before and both times noted that the lingual tonsil was enlarged.  So he asked us to come in again and if it was still enlarged he would recommend a lingual tonsillectomy.  We went back to our insurance for a referral to see him again, and they insisted we see an "in-plan" doctor first because we were now considering surgery, which we wanted insurance to cover.  So off we went to the new doctor (the fourth ENT we have seen) and he was very nice - he did a very thorough exam, including the nasal scope, looking in her airway with mirrors, etc.  He even reached in and felt around in her throat!  His final conclusion was that her airway is narrow but it is not due to tonsil or adenoid tissue that could be taken out to correct the problem.  He did not find the lingual tonsil to be enlarged.  So, we were sad to know that the surgery option is truly out of the question.  

Since every attempt at treating the apnea has come to a dead end at this point, L has responded by saying, "OK, this is the way my life is going to be, so I'd better stop waiting to feel better and start living my life."  She is still in school, acting in plays, babysitting for a little spending money, and planning a mission trip to Peru for next summer.  She is starting to think about college.  She knows she has to guard her sleep time - so she rarely goes on sleepovers or stays out late.  Her outlook is good even though she rarely has much energy -- she pushes herself to participate in life.

I worry about all of the health risks associated with untreated apnea.  I also know I am seeing cognitive changes, in that she used to be a top student with little effort; now she is a medium student, even with a lot of effort going into her school work. I know her memory has suffered over these years of sleep deprivation because she needs lots of help to remember her schedule from day to day and asks me the meaning of words I think she should know.  She does not get some connections between ideas that, to me, seem obvious. She needs someone to draw the inference for her.  She does not read much for pleasure anymore because she knows it will put her to sleep!  So I still have grist for my worry mill, even though we rarely even talk about her health issues anymore.  

We recently ordered her a "Sonapillow" figuring it couldn't hurt and although it would be the most expensive pillow in the house, it still costs less than a month's rental on the CPAP machine.  The shipment on these is notoriously slow, but if we get the thing and she tries it, I will let you know what we think.  

Thanks for all your support!