Sleep Apnea

Parent Q&A

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  • CPAP -- trouble with ears

    Jan 12, 2024

    I'd like to connect with other CPAP users who developed ear problems while using the device. Nearly two years ago, I saw an ENT doctor about certain symptoms, primarily reduced hearing in one ear, as if I'd just gotten off an airplane after a long flight. She was dismissive when I asked if my years of CPAP use was a possible contributing factor or even the direct cause. She didn't ask any follow-up questions and moved on.  She was sure from my first appointment that it was an allergy, and 9 months later, when allergy treatments didn't help me, she decided it was Meniere's disease, even though I don't have the most common symptoms of Meniere's. I've since read that in fact, symptoms like mine are a known side effect of CPAP use for some people -- it's called aural fullness.  I'm annoyed that the doctor didn't evaluate my question seriously.  I don't want to give up the CPAP, and I'd like to find a doctor familiar with both hearing and CPAP use, so my device can be adjusted in a way that doesn't affect my ears. If you've had ear problems with CPAP use, I'd like to know who treated you -- if in fact successful treatment is possible.

    An oral myofunctional therapist can evaluate swallow and suggest ways in which snoring and apnea related weaknesses might impact ear drainage. 

  • I'm looking for a provider that will do a pediatric sleep study using an at-home sleep kit, rather than staying in the sleep center overnight.  Children's Hospital & UCSF only do it in-center.  Stanford will do the at-home test but we would still have to go to Redwood City for the appt, so I'm just looking around to see if anywhere closer to Berkeley-ish areas will do a pediatric at-home sleep study.  Any suggestions?

    Thanks very much! 

    Hi,

    Ill be curious to see the responses.  We did a sleep study for my teen at home and then overnight.  The difference was profound.  The home was a halter system, which came loose, but the overnight was very very technical.  She had many health issues related to her undiagnosed severe sleep apnea. I was surprised that they also had infants at the overnight study and really wished that we had had that offered.  

    Long story short. She finally had surgery for a deviated septum after many many years of struggles.  

    Wishing you well

    It's my understanding that there really is no at-home substitute for a proper sleep-center overnight study. Have you seen a photo of all the leads, sensors, and monitors used? You couldn't duplicate that at home. I understand the hesitancy (parents don't think their child will actually sleep during the study), but of all the sleep study reports I read in my line of work, very few have insufficient REM time to give a formal result. It's just one night. 

  • I was diagnosed with sleep apnea many years ago. After many trials and errors, I finally found a CPAP mask that I can tolerate, and I use it regularly.  However, I can no longer tolerate my sleep specialty practice, California Center for Sleep Disorders (CCSD). Even before the pandemic, they cut back on staff -- eliminated the receptionist, for example, who used to answer phone calls. Everything now goes through a voicemail tree.  Almost a year ago when I had an urgent question, that voicemail system persistently led me back to a full voicemail inbox, so there was no way to leave a message.  Emails written on the "contact us" form on the website were never answered.  I used to deal with the CCSD office in Alameda, but I had identical communication issues with other offices -- in fact, different phone numbers for at least three offices I called last year all led to the same full voicemail inbox. I would love referrals to other sleep specialists/practices with whom people are satisfied. 

    I haven't received my results yet, but I went to the UCSF Sleep Center and did an overnight sleep assessment there. The place was really nice and they seemed to have their routine down and did all the work very efficiently. I had a video visit with the doctor and then was referred for the overnight study. The process went smoothly (albeit slowly): https://www.ucsfhealth.org/clinics/sleep-disorders-center

    I see Dr. Amir Faruqui for sleep apnea.  Dr. Faruqui is excellent, his practice is responsive and easy to work with.

    (925) 934-2121  • Work

    2121 Ygnacio Valley Rd, Walnut Creek, CA 94598, USA  • Home

    try   Stanford Sleep Clinic    Redwood City, CA · (650) 723-6601.

  • I'm losing my mind in the weeds on this so I'm desperate for advice. I was diagnosed with moderate sleep apnea this spring after many years of high blood pressure that isn't fully managed w/ meds. I'm not sure I've EVER felt refreshed when I wake up in the morning in my life. I always thought it was for other reasons (motherhood, stress, perimenopause, hot flashes, migraines, the list is endless).

    A CPAP is a non-starter for me. My reasons are excellent but too personal to share publicly. And nothing like Inspire - I don't want anything implanted in my chest.

    I have Kaiser HMO and have been thru the sleep study and have spoken w/ a sleep doctor. He gave me a MyTap boil & bite device which allegedly will work "enough" to allow me to pass the 2nd sleep study which is required to give me a referral for a dentist who will make a custom oral appliance. The disclosures on this temporary device are making my head spin with the risks to my bite and my jaw and my teeth. My insurance will definitely pay in full for a custom device - the DME is great and doesn't seem to have any conditions on it aside from a referral.

    I haven't had a drug induced endoscopy yet, thought am wondering if I should to know the true reason for my apnea. I have a deviated septum, which is only tangentially related, but I understand fixing it won't address the apnea. I've tried breathe right strips and flonase, but that's only making nasal breathing more comfortable (which is good, true), not changing the apnea episodes.

    I would love a permanent solution to this rather than a lifetime of any number of devices. I do not think I'm willing to go as far as full jaw surgery or palate/tongue surgery. I understand that Stanford is better at solutions for this than Kaiser and that other countries are better at this than the US is, but how to engage with them as a Kaiser patient? I've read James Nestor's Breath book and there were a few ideas there too. The one orthodontist I spoke with said that I'm too old (52) for a palette expander. Am I?

    Has anyone - especially someone with Kaiser insurance - figured out the least obtrusive way to solve this? Any recs for professionals in the Bay Area?

    I'm all over the place trying to figure out how to move forward, so if you have any ideas or anecdotes, I'm all ears! Thanks!

    Hello;

    I hear you. My partner has moderate sleep apnea and wears a CPAP which he hates tremendously but it does work.

    Our kid was following on the same track, and we did 9 months of Myofunctional Therapy with Virginia Downing. It's a HUGE commitment (time and financial, and Kaiser wouldn't cover any of it of course), but she got our kid using his tongue differently through a series of daily exercises. He did have a frenuloplasty (his tongue was fairly tethered to the bottom of his mouth) which, combined with the exercises, has made a huge difference. She's intense, it's a real commitment, but you could even just do a consultation with her and see what she thinks. Here's her info--

    https://orofacialintegrity.com/breathing/

    Best wishes to you. 

    First of all, I'm so sorry to hear about your distress. Sleep is so essential and poor sleep is a huge deal. I totally feel for you. I would encourage you to go all the way with the diagnosis to understand exactly what is going on that is causing the poor sleep. I say this because I think that's the only way to really understand what options will (and won't) work for you, since there are lots of treatments out there, but none of them work for everyone as there can be many causes of OSA. I'll just share that personally I am in a very similar place as you (50 something peri mom, etc) and my sleep started to take a turn during the pandemic. I had an at-home study where they said 'congrats, you don't have SA" even though I do stop breathing a certain number of times per hour (below the threshold for mild). I tried to try to figure out what may have changed. I had been singing in a choir for years and stopped during the pandemic. Guess what? The muscles I had been using were basically weakening, causing an increase in sleep related apneas. I purchased a CD "Singing for Snorers" and started the exercises, and things improved a lot. Not to say this is a path for you, but understanding what was happening helped me figure out how to make things better. I'm also interested in this new device eXciteOSA Clinically Proven Daytime Therapy for Mild OSA and Snoring - eXciteOSA. At any rate, there are SO many people suffering from OSA and there seem to be new treatments being developed all the time. I hope you can get to the root cause and work your way out of it from there. Best to you!

    I have experience as a Kaiser patient who was recently diagnosed with severe sleep apnea.  I did get a CPAP. You said you don't want that, but maybe my experience will be helpful. It took me a couple of months to fine-tune the fit so it was comfortable.  I do not use the full mask, just the little "cushion" that sits under the nostrils and delivers the pressure that keeps your airway open. For the first few months I felt very resentful about having to wear that stupid thing and I cursed it every night. But a year later, the CPAP is my friend. I sleep all night long. It is comfortable to wear now that I've figured out the logistics, and I would even say it is soothing.  It's also completely quiet - it's hard to tell when it's on.  I am also completely quiet now - no more snoring - which my husband appreciates.  I've taken it on a dozen trips - it's very portable.  I know you said you don't want the CPAP, but the other options you listed sound worse than a CPAP.  Maybe you could give it a try for a couple of months. If you don't like it, you've lost nothing and you can move on to a different option.  I'd be happy to answer any questions.

  • Hello! 
    Has anyone’s child ever had an Adenotonsillectomy and Turbinate reduction YET still had unresolved Obstructive Sleep Apnea?

    - After more than a year of night terrors, my 6 y.o. daughter was diagnosed with severe sleep apnea.  She got a Partial Tonsillectomy and an Adenoidectomy. That brought her apnea down to a moderate level. 
    - But since the T+A surgery didn’t completely cure it, she then got a Turbinate Reduction. The turbinates were waxing and waning in size - at one point touching the septum. - Unfortunately, the turbinate reduction didn’t help and the AHI is actually higher now. She still has moderate sleep apnea, has incredibly restless sleep, has daytime fatigue, and has occasional night terrors.  - She has tried Flonase to shrink whatever it is may be big in there, but that didn’t do anything either.- She’s not allergic to anything besides dust mites/mold. We constantly wash her mite-resistant sheets. - Both her dad and I have sleep apnea. :(

    At this point I’m feeling like I’m running out of options. She’s not overweight (she’s slender, actually), does not have an oversized tongue, nor does not have a obvious small jaw or disproportionate jaw.  I am very worried about the cumulative effects of apnea on her cardiovascular health, brain health, general health, etc.  *Has anyone experienced something similar with your children? If so, what subsequent treatment did they receive, and did they work?* Has anyone’s children used a pediatric CPAP? If so, how long did they use it for, and did it affect their facial skeleton growth over time?  (I have been told that CPAP on children may impede on facial growth). Did the Cpap work? Thank you so much in advance for any feedback! 

    You might consult a dentist or orthodontist about her bite/jaw alignment. They often start at early ages now with retainers that can address a number of issues. Also, my cousin's child had a bad drooling problem.  Finally, they learned that there was something wrong with how her tongue is attached.  She was able to correct it through exercises.  I just mention this because the tongue is involved in obstructive apnea. 

    She may need a sleep endoscopy to better diagnose where the obstruction is occurring - it's called a DISE (drug induced sleep endoscopy) and it does mean more anesthesia, but it is brief and yields concrete information as the surgeon directly visualizes with their scope where the obstruction is happening in the airway, while she's asleep. If it is operable, they can do it then (such as a lingual tonsillectomy, if the lingual tonsils are obstructing - lingual tonsils are not removed in a traditional tonsillectomy). I recommend Pediatric OHNS (Otolaryngology Head and Neck Surgery, formerly known as "ENT") at UCSF Benioff Children's Hospital in San Francisco (Drs. Rosbe, Meyer, or Chan). See what they think. From the medical perspective - have you tried Singulair at bedtime yet? You said Flonase hasn't done much, but there is data that Singulair (a leukotriene modifier) can help OSA. Or at least try Zyrtec - that data is less strong, but she should try an antihistamine of some sort, especially if you know she has dust mites/mold allergies. Lastly, you could also see a Craniofacial plastic surgeon (Dr. Hoffman or Pomerantz, also UCSF) to see what they think about her anatomy and how it may be contributing. Best of luck!

  • I need a new sleep disorder doctor.  For nearly four years, I've been a patient at the California Center for Sleep Disorders in Alameda (they have offices in other Bay Area cities, too).  Early on, I underwent both an at-home and in-lab sleep study and was diagnosed with sleep apnea.  A CPAP machine was prescribed, and I now use it nightly.  The doctor tells me the number of apnea episodes have dropped dramatically.  However, I am still not getting restful sleep.  It's especially hard for me to wake up in the morning, regardless of the number of hours I've slept.  I've discussed this with my doctor, who just suggested that I turn off all electronic devices an hour before sleep.  I don't have any trouble falling or staying asleep; waking up and feeling rested are the issues. Please respond only to my plea for another doctor or maybe an acupuncturist if one helped you with the very same issue.  While I'm sure there are teas, calming apps and the like out there, that's not what I'm looking for.  

    I am responding as a patient who has used a CPAP for 25+ years. I was first diagnosed by the Stanford Sleep Disorders Clinic, and after moving to the East Bay, I have not found a clinic or doctor with the same level of expertise. If Stanford has recently opened an East Bay location, I'd try that. Otherwise, booking an appointment at the Redwood City clinic could be worth the trip.

    Re: the CPAP, one of the bigger issues is being able to tolerate using the machine. Since you've mastered that, there are few ways to improve the airflow that have been helpful, including using the humidifier attachment, wearing a Breathe Right nasal strip, and using nose drops or over-the-counter Flonase during allergy seasons. I've also experimented with different masks and hoses by ordering online at CPAP resellers. At one point, I even bought a technician's manual on eBay so I could make minor adjustments to the standard pressure without having to schedule appointments.

    Lastly, I feel most rested during periods when I'm more active during the day. Exercise can be a challenge when you're already feeling drained but even a regular walk after dinner can be sufficient.

    Have you had your thyroid checked?  I also have sleep apena and still am exhausted when I wake up. I've also been diagnosed with hashimotos (low thyroid) and am working to find right dose of thyroid meds to combat the fatigue. 

  • Can anyone recommend a pediatric orthodontist or someone practicing orthodontics with young children? My son is 4 and has a severe overbite, snores at times, grinds teeth, and results from sleep study show mild sleep disturbance.  I'm mostly worried about the effects of obstructed airway on his development, physical and emotional health.  His dad has severe sleep apnea and we fear our son is headed down the same road.  We are interested in early intervention and prevention.  We've explored dr. Hockel in walnut creek but would like another opinion before pursuing costly, serious treatment.  As a parent, I want to be sure we can trust the provider before signing on and that treatment is appropriate and effective.  We live in Oakland but are willing to travel up to 45min or an hour if need be. I'm all for thinking outside of the box but also want to pursue treatment substantiated by evidence, especially since our son will be scared and resist treatment to the best of his ability. Thanks so very much.

    Hi,

    I've been looking for an orthodontist for my 13 year old. I came across Dr. Ferrari in Kensington at http://ferrariorthodontics.com/ and we have a consultation in a few weeks. On the website, she discusses airway issues and treatment for this. Hope this helps.

    Hi,

    Dr Patricia Choi in Fremont is an excellent Orthodontist. She is excellent with kids and fixed my daughter's teeth. 

    Dr Jennings in Alameda is an orthodontist who is also a cranial facial practitioner.  He has a holistic view on orthodontics and has treated my daughter with congenital scoliosis and my other daughter who was recommended oral surgery prior to being treated at Berkeley Ortho.

    Thanks to Dr Jennings we were able to postpone my daughter's back fusion surgery by 5 (!) years, and my other daughter never had to have oral surgery. 

    The cons to going to Dr Jennings is that his office is at the very tip of Alameda, and his treatments take years- so you need to be fully committed. It was waaaay worth it for our family!

    Moderator Note: Dr. Jennings is not an orthodontist and does not describe himself as such on his website http://tmjoakland.com/dr-dwight-jennings

    Have you visited an ENT?  My daughter had her adenoids removed at age 4 and it really improved things.  Hers were extremely enlarged and caused breathing difficulty especially at night.

    We saw a pediatric ENT after a sleep study confirmed our 10 year old had sleep apnea.  They removed the tonsils and adenoids and all was good after that.

    I would highly recommend Dr. Claire Ferrari in Kensington.  I have two children and they have both  received treatment from her.  One of them had suffered from sleep apnea, and Dr. Ferrari  and her team have worked wonders to transform his airways. Not only is she a superb orthodontist, she has done advanced training studying airways and sleep. Her office uses the latest imaging technology to help her see patient airways much better than normal orthodontists. She takes the time to talk about the symptoms and helps get necessary information to the ENT. Apparently making the jaws bigger with orthdontics at an early age can prevent sleep apnea in adulthood.   

    Strongly recommend Dr Ferrari in Kensignton. She has state of the art 3-D scanning and the expertise required for your case. Also, since she is a small practice you can't beat her personal care towards patients. http://ferrariorthodontics.com/

    Dr. Claire Ferrari is fantastic. I cannot recommend her enough. She has guided and helped me for about a decade in the orthodontic care for my son. Her office is in Kensington. You will not be disappointed. She is brilliant!

Archived Q&A and Reviews


Questions Related Pages

Surgery for adult sleep apnea

May 2005

Can anyone recommend a physician for adult laser surgery for obstructive sleep apnea. Also, was the surgery sucessful, and what was the process like? jessica


I had this surgery last August. It was performed by Dr. Andrew Moyce of Summit ENT. I liked him. Still do. Felt no pain during surgery. Had tonsils, uvula and soft palate tissue removed. (My apnea was severe and CPAP machine caused allergic reactions)

Recovery was tough for a while. Horrible sore throat for days. Very hard to eat anything but crushed ice, popsicles, jello for days.

A week in, I sprung a leak (artery blew in throat) and had to go to Summit emergency room at 3 am. Dr. Moyce came and sealed me up. Scary as hell, but I made it thru. I understand leaks are not uncommon with the surgery.

No other complications.

I've had to adjust for some time. Voice box resonates differently. Have issues with mucus drainage from nasal passages which is annoying.

OTOH. Apnea is gone! I get good nights sleep. My wife says I no longer snore...it used to be real bad. It was unpleasnat, but worth it. I'm far more rested (and so is my wife) and have adjusted fine to the issues I mentioned above.

I also have a good friend who had the surgery too, but he got it done at the VA hospital in SF since he is in the Coast Guard. Ray


Getting help for husband's sleep apnea

Sept 2003

My husband was diagnosed with sleep apnea in 1999. At the time we were living in Oregon and had excellent medical care. He was seen by specialists, had sleep evaluations done and was given a CPAP machine. About 9 months later we moved here to the Bay Area, meaning we had to change doctors. I was overseas when my husband was diagnosed and did not get to ask many questions about his care. When we left, we were given the machine to keep (not rent) and sent on our way.

Our doctor here, who has been in practice for quite a while, admitted to never having had a patient with sleep apnea before. In the last three years, we have never had a follow up appointment or even a phone call regarding how his treatment is going. It seems to me that since this is a lifelong condition that is potential fatal ( should he stop breathing and not start again) that we should be receiving some kind of follow up care on a regular basis.

At one point his CPAP machine broke and it took a month just to get a replacement machine. The respiratory therapy company we worked with, Apria, promptly lost our machine and then tried to charge for a years(!) rent while they made very little effort to find it. It took us over a year to get the machine that we owned replaced with a compareable machine. The doctor's office was of very little help and didn't even seem to comprehend the urgency of needing a CPAP to ensure that my husband didn't stop breathing at night. And in 3 years we have been unsuccessful at getting any replacement allergen air filters for the machine.

My question is for those who are being treated for apnea. Do you see your doctor or a specialist on a regular basis? I have a nagging feeling that we are not getting the proper medical for this condition. Our machine even has a smart card for usage tracking, but no one seems interested in it. We have Cigna insurance, but really no idea about whom in the Bay Area we should be seeing. We appreciate any advice or helpful information!


I have heard this dentist speak on sleep apnea (his specialty) at conferences. He is fabulous and had some interesting info on his site: http://www.brianpalmerdds.com/Default.htm Jen


I don't know if this was the type of information you were looking for, but I would consider checking to see if my neurologist, Joanna Cooper, accepts your medical insurance. I know she works with patients with sleep apnea. I myself see her for other reasons, so I can't speak specifically to that, but she is wonderful with me, and I would pay out of my own pocket to see her rather than change because of my insurance. Karen


I was diagnosed at the Stanford Sleep Disorders Clinic with a condition related to sleep apnea. I am a Kaiser patient and I paid for the initial evaluation out of pocket as Kaiser's rudimentary diagnosis technique did not show a problem, but I thought that one might exist.

Stanford's report from the evaluation- exam and history, cost about $300- confirmed my suspicions and forced Kaiser's hand- they then paid for a full sleep study at Stanford which confirmed the preliminary diagnosis. I was put on CPAP which has helped a lot- I am now rested by sleep instead of waking up still tired. Apria provided me with the CPAP machine and initial instructions, but I have not found them very helpful for ongoing assistance. But since the CPAP continues to work, I have not been particularly concerned.

None of the masks that Apria offered me were comfortable (it's a challenge to sleep with that device anyway), and I found another resource for other choices and replacement parts as I've needed them. I pay out of pocket, but maybe you have different insurance that would cover it. Jeanie Blair, a respiratory therapist, has a business called CPAP Company in Sunnyvale, phone 408-746-9764. she is a nice person and has been very helpful.

One word of caution about Stanford. I feel that they are too ready to recommend surgery, some of it experimental. I wasn't convinced that I needed it and it was very expensive (Kaiser would not pay for this as it was experimental), and I sought opinions from 3 doctors unaffiliated with the Sleep Clinic. None of them felt that the surgery was warranted, and one said it might even be harmful. anon


Does snoring mean Sleep Apnea?

Aug 1999

Does anyone have experience with their children's sleep apnea? My son (2 yrs old) snores terribly and seems to have trouble getting the breathing technique down at night. He can't seem to breath through his nose and sometimes will wake himself up trying to get air through. Obviously he breathes through his mouth, but when he's not in a deep sleep, he struggles with how to do it. It's painful for me to watch, not to mention the loud snoring and flopping around on the bed when he wakes up. We sleep together, so I get to participate in these events. I did see an ear/nose/throat doctor who said he did have big tonsils and probably big adenoids, but would need an x-ray to know for sure. We didn't really get into the subject of surgery, but it may come to that. However, the doc said he may outgrow it too. I really don't want to face surgery, but of course I don't want my son to lose sleep either. Thanks.


We had the same problem with our daughter, now 3 years old. For a long time she would wake up at night crying, and most times we (and her pediatrician) thought it was a new ear infection, because she always had some fluid behind her ears. It wasn't until she could say the word nose when she woke up that we realized there was something wrong with her breathing. She had been breathing mainly through her mouth too. She had huge tonsils and when they did the sleep test they found several episodes of apnea. We tried a nose spray for several months to diminish the inflammation in her throat and nose, but it wasn't very helpful. Finally, after hesitating for a long time, she had surgery, and tonsils and adenoids were removed. We still cannot beleive the difference. She sleeps trouth the night with no problem, her snoring is completely gone, she breaths much more easily, she is not cranky for being tired as she was before. And best fo all, her frequent ear infections have disappeared, at least for the last 4 months. The operation is really simple, and although the post-op is quite painful, now I believe it was really worth the trouble. It was done at Kaiser Oakland, by Dr. Byl. Good luck!


Sleep apnea that results in the person awakening gasping for air, with or with out, but usually with, loud snoring or other airway noises, in any age group, is not okay, not normal, and should be the occasion to run, not walk to a competent doctor who will perform a sleep study. The common reason for awakening is that the oxygen saturation level in the blood gets so low that the person jerks into consciousness to get more air: they are suffocating, in a sense. Not getting enough oxygen is not good for your body! that is why you wake up, to open the half-closed airway! in adults, this condition increases risk for heart attacks & sudden death. The person may need to use a CPAP machine: a mask fits over the face while (usually) he sleeps, thru which pressurized air is blow n into the airway to force open the air passages so that the person person gets enough oxygen while sleeping. Some people have their throats/airway remodeling surgically for this condition. Merrill Nissam in Marin is one surgeon who does the procedure. If it were happeneing to my kid I would not hang out & wait for him/her to outgrow it, I would get right on it, do a lit search, go to Children's Hosptial, UCSF or Stanford & not to a small pediatric office. Kaiser has classes on sleep apnea, and a doctor whose speciality it is to deal with it. How come I pontificate on this? I am an ER nurse & diagnosed my partner's sleep apnea (he was awakening gasping gasping from low O2 many times per night & felt tired all the time & was a monster loud snorer) & hauled him in for help. He now sleeps with a CPAP, feels much better. This is a common, oft-undiagnosed condition that is a serious health hazard for some people! It should be part of routine screening, especially in adult men, but it is not! Oh well. Now you know! Save your family members!


Is daughter's lack of growth due to sleep apnea?

Dec 1999

My daughter is 3.8 years old, but she is shorter than the average 2 year old. I was concerned about her growth, so her pediatrician gave her some blood tests (what, I don't know) These came back normal. His explanation for her lack of growth is one I've heard before: Her tonsils are enormous (they squeeze up against each other). This causes sleep apnea which interferes with deep sleep needed for growth. (Evidently there is research to support this idea.) He believes that after we remove her tonsils, all will be fine.

She does act like a child whose sleep is being disrupted: She is relatively lethargic, inattentive, and constantly stares off into space. I would love to think that many of these problems could be fixed with a tonsillectomy. However, I am not convinced.

One, I haven't really witnessed this sleep apnea. She does snore when she's sick, and her breathing is always audible, but only a few times (when she was very congested) did I hear her stop breathing for a few seconds. She sleeps in the same room with me and I listen a lot. Is sleep apnea so subtle that I miss it? Have other parents had their children's tonsils removed just because they were large or the child seemed sleepy?

Which brings me to two: If she is so sleepy then why does she sleep far less than average for her age? In each of her 4 child cares, she was the ONE child who refused to sleep, and actually stopped napping regularly at 26 months. Are sleep apnea children sometimes non nappers? Have people seen their children go to sleep more easily after their tonsils were removed? Do they become less fidgety at bedtime?

Question three: Could a child have the growth and grogginess symptoms of sleep apnea, but have the problem really be some sort of childhood insomnia? I sometimes wonder about our family bed situation. (especially when I lie awake in bed at 3 am after being woken up by someone, for the hundredth night in a row). This girl takes so long to fall asleep and sometimes announces: I'm not going to sleep tonight. Has anyone every heard of chronic insomnia for a child so young? Thanks


You have a really good pediatrician. Sleep apnea often goes unrecognized. Your description of her symptoms is exactly that of an affected child. If you want a 2nd opinion, I'd suggest calling Rafael Pelayo MD at the sleep disorders clinic at Stanford. You'll get state of the art advice and probably some good articles or references.


How about renting an apnea monitor? A sleep study at home? At least that way you could rule out apnea if that's not the culprit. Maybe your insurance would cover it, it's certainly worth testing before having a tonsillectomy. Good luck.


My son had his tonsils removed when he was almost five. He was also diagnosed as having sleep apnea. In his case, I could see it happening many times during the night and it wasn't something that was hardly noticeable. He snored very loudly when sleeping, and sometimes, would just stop breathing for a few seconds (maybe 6 or 7 sec) and then, he would start again very loudly, as if he was drowning before. He was always tired, specially in the morning, even though he slept long hours at night. He also didn't have much appetite and was very skinny, to the point that really started worrying me. I had talked to his pediatrician many times about how he snored and was tired and the pediatrician would always tell me that he would grow out of it. Just after changing pediatricians, for other reasons, I found out that he actually had sleep apnea. I was very reluctant about having the surgery and did a lot of research about it, but finally decided about doing it. Today, I can tell you that the only thing that upsets me is not having done it before. My son is another child. He doesn't snore anymore, wakes up every day in a good mood, grew up and gained weight, and his teachers at school keep telling me that he really flourished after the surgery. This is my experience, I hope the information helps you a little bit in deciding what is the best in your case.


I would suggest you talk to an ear, nose and throat specialist about this problem (didn't your doctor refer you?). My two-yr old had huge tonsils. and adenoids (3x larger than normal) which were detected by an x-ray. Dr. Wesman at Children's Hospital was his doctor, and although he recommended surgery, he never pressured us and let us decide when or if we wanted to have the tonsils and adenoids out. My son did not sleep well--he would snore loudly and at times, stop breathing for up to 15 seconds. I could see his chest heaving, but no air was going in. Then all of a sudden he would snort and gasp and breath through his mouth. All of this noise usually woke him up as well, so there was much flopping around on the bed. We sleep together and of course I was getting no sleep either as I waited for each breath. We finally decided it was time and had the surgery. The results were dramatic. Not only did he sleep and quietly at that, he began to eat better, too. I don't know why, but it was always a struggle to feed my son since he was 1 year old. He has always been in the lower percentile of weight and height. However, he gained two pounds in the month after his surgery and he continues to eat like a normal picky eater. As for sleep habits, my son still wakes up 2-3 times per night and doesn''t seem to need more than 10 hours at night (two hour nap at midday though). He has plenty of energy throughout the day. From what you describe, it doesn't sound like your daughter has sleep apnea as I know it. But perhaps it comes in different forms. Follow your gut feelings--- do get more information on insomnia. Sounds like you're on the right track... Good luck.


My older son, Benjamin, went through this when he was a toddler. He had a terrible snore and suffered from noticeable sleep apnea, which resulted in his being kind of spaced-out during the day. The obviousness of the sleep apnea developed over time--I'm sure he was experiencing interruptions underneath the snoring before the interruptions became prolonged enough to be distinguished from snoring. His growth flattened out entirely for a long period. The problem was identified when he was about 20 months old, but the doctors wanted to wait until he was 2 before operating (I never did ask for details about the need for the wait). Anyway, his tonsils and adenoids were removed shortly after his 2nd birthday and the change (after he recovered, of course!) was remarkable: quiet, restful sleep; increased alertness during the day; increased appetite; growth spurt; learning spurt.

Even though it was hard to subject a 2-year-old to surgery (Benjamin's father was traumatized for life when the surgical resident took Benjamin in his arms and walked off down the hallway with him---Benjamin reached his little arms back over the resident's shoulders and said Papa, Papa), I am convinced that having those swollen glands removed was absolutely the right thing to do. Good luck with whatever you decide to do.


To the parents of the child with very large tonsils and possible sleep apnea. My child is my almost 40 year old husband who always had the exact same symptoms you all mentioned since he was a very small child. It became a bit of a family joke that when he shared a room with his older brother the brother would realize he wasn't snoring (therefore not breathing) and just as he would get out of bed my husband would snort and breath again. After about 10 years of marriage the snoring became so pronounced and the other symptoms so debilitating that I encouraged him to see a doctor about it. The doctor did a sleep study along with many other tests and referred him to a specialist. At that time he was found to be so seriously apneic that they did major surgery and removed his uvula, part of his soft palate, tonsils and adnoids. They said that if we had not caught it he would have died in his sleep. Once your blood oxygen drops to a certain level long enough it will stop your heart. Much like drowning. After his surgery a second sleep study found that because it had gone on so long his brain no longer knew when to tell him to breath when he was asleep. He uses something called a nasal cpap machine to help him breath at night by blowing air into his nose to stimulate his lungs to inflate.

I can understand your concern about having your child undergo any kind of surgery, but if your pediatrician does not refer you DO IT YOURSELF. Do not let this go on until he is an adult.

I will ask for my name not to be used in this but in an adult male another side effect is impotence which they tell me is the LAST thing to go!! We have since had 2 more children and my husband can't believe the difference in his life! He will graduate from graduate school in May after 7 years of school which he would never have had the energy to do before.


Apnea in adults and CPAP mask

July 2001

I have just been diagnosed with moderate sleep apnea, and have been told that I need a CPAP mask to wear while sleeping. I'm totally new to this, so any information you'd like to share I'd appreciate. Thanks.


I don't know much about apnea myself, but I came across a site on sleep disorders on the internet that may be helpful to you. They also have a sleep clinic in Oakland. There are sleep disorder centers at UCSF and Stanford as well. http://www.sleepsmart.com/ Good luck. avds


I was initially diagnosed with moderate sleep apnea. I tried the usual mask that fits over the nose and I found it difficult to fall asleep. I felt like I was suffocating, and it was very noisy. My respiratory therapist recommended I try nasal pillows that fit under the nose. Go to this site for a picture: http://www.mallinckrodt.com/respiratory/productcatalog/product.asp?id=233. I found the nasal pillows much less invasive and quieter. Also, I went to an ENT for an evaluation after the first sleep test, and it was discovered that I had nasal polyps. I had an operation to remove the polyps and fix a deviated septum. I had another sleep study and my sleep apnea improved to mild. And I continue to use the nasal pillows. There's a variety of masks, CPAP machines, etc. If something doesn't work for you, push to try something else. Good luck.