My daughter is 14 & just diagnosed with sleep apnea.  We are waiting for an appointment for the sleep clinic for a cpac machine.  I know very little about this, but they also said she would have to see an orthopedic surgeon, get braces to align her teeth, then have surgery to realign her jaw.  She's already had her tonsils removed about 5 years ago.  This sounds strange to me.  How does realigning her jaw open air passages?  HELP!

I'm not familiar with jaw realignment surgery but I wanted to pass on a link that I found that may or may not be helpful.  

http://www.healthlink.com/provider/medpolicy/policies/MED/OSA.html

It's the first thing that I've seen that goes over all of the alternatives for treatment of sleep apnea and while it's for adults, it at least gives some guidelines for when treatment is necessary and which ones are tried first.  I hope you are able to find someone who's familiar with all of this.  Hugs sweetie.

When I was doing my research about obstructive sleep apnea, I found that they do that surgery in the desperate cases, when they are still having issues breathing despite other alternatives or if there is obviously physical anomalies, making it incapable for them to breathe properly. I'm not sure if that is the case for your daughter, but I would surely do some more investigation to see if this is the right choice for her.

Please, please, please try a CPAP first.  That would be very invasive surgery and could possibly leave her with irreversible side-effects such as nerve damage or TMJ problems.  It is almost criminal that a CPAP was not recommended first.

Here is an article on surgeries from Stanford which is a top institute on sleep medicine.  However you have to understand how "success" is defined.  For another surgery for apnea called an UPPP, "success" is considered a reduction in AHI by 50%.  One peer reviewed research article I read cited the same "success" definition for MMA.  Therefore, it would only eliminate the need for a CPAP in the mildest cases of apnea.  So it is extremely important that you know the severity of your daughter's apnea and that is determined by the AHI (Apnea Hypoxia Index=events per hour).  Mild=5-15, Moderate 16-30, Severe >30.  CPAP therapy is usually not recommended if the AHI is under 5, so 5 is the magic number to look for when you divide your daughter's AHI by 2.

You have to purchase the full length article.
Success and failure in treatment of sleep apnea patients.

Who said she needs to go through all of this?  She needs to be seeing a physician who is accredited in sleep disorders first.

Keep us posted!!

Vicki


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

Thank you so much for your replies.  It was such a relief to find your website that I could ask questions.
As for CPAC, this was only suggested to use while waiting for an appointment to a surgeon in Halifax.  
She has not even had an overnight test done, this was the test result from a home test.  And the average
they gave me was 3.9, about 4 per hour.  By your information, this seems to be way out of proportion!!!
Am I missing something??? I too have had a friend with tmj problems, I really have no interest in this surgery
for my 14 year old daughter - especially for nothing.  I really do understand the severity of future complications.
My first step is to get a dentist to look at her mouth & jaw to see if any of what is being said is valid.  If he can't
answer me, I'm sure an othordonist can.  And by "they", is a doctor at the sleep clinic at my local hospital.  She
explained that my daughter is sleep deprived, and if this continues, she will not graduate from school, lose weight,
and even said she wouldn't grow up to be married and have children.  From an average of 4 episodes an hour,
and that's mild - I'm real confused.  I will keep you updated.  Thank you for your support!!!!!

Hello,

There is a different criteria for apnea in children and adults.  I'm not sure at what age a child turns into an adult as far as an apnea dx goes.  For adults apnea is more than 5 events/hr.  For a child apnea is 1 event/hr.  Does she have any other things going on that would increase her chances of apnea....downs syndrome, neuro-muscular diseases, craniofacial anomalies, overweight???

I would not let anyone touch her until you have a proper over night sleep study done at a lab.  There can be errors in testing as well as errors in reading a child's sleep study.  Chris fooled our pedi-pulmo board certified sleep doc into thinking she did not have apnea just very lively legs.....turns out after reconsideration that she has apnea causing the very lively legs.  She fooled 3 pulmo's into thinking she was fine.

Please make sure anyone treating your daughter knows what they are doing.  Make them convince you and show you why she should have such serious surgery.  Get a second consultation if you can.  It may take more time, but surgery can't be undone.

Susanne and her mini-hosehead Chris

Thanks Tatamom,
I will try that.  I was thinking of how to keep her more on her side.  I know pillows won't work.  I'll look for a wedge, that should be easy to find.  And thank you for the information about how they rate kids.  Someone just said that to me today, other than you.  So, are you saying they will start her on a CPAP for as low as 1 episode an hour?  She's 5'8", she's the size of an adult.  Does that matter?  Another question I got asked today was, if they find this at 14, does that indicate the number will most likely go up from there as she gets older?  Is that their worry?  I have so many questions.  It seems when I get one answered, I come up with 5 more.  All you mom's out there going through this....God Bless.  This is really frustrating.  I found when I went through it, it was much more efficient.  All my questions were answered, and I had access to someplace to ask all my questions to get the answers.  My family doctor is away until June 23rd.  I had to make a decision today, whether my daughter go to summer school, or repeat grade 8.  Yeach!  She saw a Dentist yesterday.  Just waiting for an orthodontic appointment.  The dentist also suggested I bring her to a nose, throat & ear specialist for their x-rays.  They can view how the tissue is around her air passages.  I thought that was a really good suggestion.  I am getting bits of info here and there.  I am grateful for that!

Karen.

Hi Karen,

I wish there were easy answers out there about kids and apnea.  Oh how I wish there were answers....

IMHO untill you have a real sleep study done, it might not be best to assume that sleeping on her side is the best position for her (Chris had an AHI of 28 on her right side and 2 on her back.....not what you would expect).  She may already be sleeping in the best position for her, her body knows how best to get air all thing considered.  However if you feel that her side is best I have heard of people sewing a sock in the back of their PJ's and putting in a few tennis balls to discourage back sleeping.

Chris was taken off the cpap because the testing (post adenoid surgery) showed her apnea rate to be 0.8.  However after 8 months the pulmo looked at her study again and said OOPS....it is really 1.8 and back on cpap she went.  However her problems go beyond just the apnea, she also has Restless Leg Syndrome and Perodic Leg movement disorder.  This means her quality of sleep was quite bad.  She had been on medication for the RLS (did not work well) then started cpap again and the first night she was so still it was scary.  She was so calm because she was breathing, we were able to stop all leg medication (it wasn't working anyway) and she was fine.  Actually there was a jump in her reading and math skills with the cpap.

So will she be on cpap????? I don't know, possibly not.  I don't know if this gets better or worse as they grow up.  It seems like because your daughter is the size of an adult, they might just watch her and see.  They really need to do a real sleep test to get the whole picture.  Getting the ENT and dentist involved is a good move.  The more information you and she have the better your decisions will be.  Having a child on cpap is complicated, but would be easier because of her age.  When it comes right down to it, having a healthy child on cpap is so much better than an unhealthy on without it.  It isn't fun, and at times isn't easy but it doesn't have any side effects (other than a few mask lines) and doesn't  hurt.

I am thinking that because of the way Chris is that this will be a very long friendship between her and her machine.  She is fine with that (right now) because on the rare night she does not use it she can truly tell the next day.

Hang in there and keep looking for answers.....make those doctors work for their money

Susanne and her mini-hosehead Chris

Best luck on deciding about summer school, I had one that was within 2 points of failing English but they made it.