Thank you all for the words of wisdom and encouragement....it is sooooooooo hard to be patient when you want your baby to just feel better.  To much surprise our son was able to wear his CPAP lastnight for a running total of 5.5hrs.  Longest stretch was 2hrs at one time.  Over the past week we have begun to fill our cupboards with a variety of CPAP masks, but not the Kidsta it will be next on the list.  We are blessed to have great connections that have allowed us the ability to try things at no cost.  He tries the different ones during the day, but always goes for the full face at bedtime--it's the mouth breather in him.  We head back to our physician today for a follow up and to discuss symptoms of distraction/school work with him.  I am excited and hopeful.  I am just so proud of what we have accomplished thus far.  Thank you all for your input and support.

5.5 HOURS!! Way to go!  I know what you mean about wanting your baby to feel better.  My daughter is an entirely different person when she is rested - and bipap has been the greatest quality of life improvement in our home!  Everything from attitude to academic performance is tied to her ability to get a restful sleep.  Keep up the good work, Mom... you'll soon see the benefits.

Well, we went to see the dr. yesterday and guess what we are increasing Dylan's CPAP pressure to 7.  The dr. thinks he is pulling off his mask because he is needing more pressure, as we wondered.  So we increased his pressure last night and he actually didn't wear it any longer, but went right to sleep with the increased pressure.  The dr. wants us to increase his pressure by 2 again tonight and then see from there.  We scheduled a CPAP titration at the sleep lab and that will be the middle of next month.  He said to keep him on the full face mask for several months until he is completely used to it, but along the way keep him interested in trying other masks during the day as he wants.  And guess what all of his distraction symptoms are not an attention disorder, but are related to his sleep deprivation and stress levels.  We are truly excited about increasing his pressure and are taking one day at a time.  

Good for you!  When we first got our auto machine a couple of months ago they set the minimum/start pressure at 5cm and my daughter (who had been wearing straight cpap for 4 years) just couldn't go to sleep.  She was so used to the 9cm she was getting on straight cpap that she just couldn't relax at 5cm.  She was so uncomfortable with the lower pressure and just couldn't settle down.  So they switched her start rate/minimum to 7 and that solved her problem.  Now when it gets to 18cm she is already sound asleep.   I hope this pressure works for him.  I am glad he's having the auto titration study - I'll never understand why they waited so long to do that for my daughter.  And I'll never understand why they don't automatically give auto machines to pediatric patients.  Why in the world would they think that one straight pressure will work all night? Now that we have the auto machine we realize how deprived she was for so many years.  The deeper her sleep, the higher her pressure requirements - and you gotta think that's the way it works for most people.   She runs at about 11-13 for the first couple of hours, and then gets up to 18 - 22cm about 5 hours into the nights, then gradually goes back down to about 14 or 15 as the evening wears on.  By early morning she's at about 10-12 just before waking up.  It makes sense to me that ALL children - maybe even all adults, should have a machine that titrates according to their needs.   As an aside, we've never been "allowed" to adjust the pressure settings on the machine... so we always have to take it into the DME provider... it's great that you can make those tweaks yourself.  Our pulmo doc believes that 95 percent of kids dx with ADD or AHDH are actually sleep apnea kids.  It pains him that so many kids are on medication, when really they need to have the sleep issues addressed - either by removing tonsils and adenoids (which he feels is the main culprit) or by using cpap.  Keep up the great work!

I should tell you that our situation is unique, I am a respiratory therapist and my husband is a paramedic and works for a homecare company, that is why we are allowed to make our own changes.   Obviously he writes a script for the changes to be made and we have the education and licensure to back it up.  I asked about just placing him on an autotitrating unit at home until he goes for his titration study at the hospital, but the dr. wanted to try going up in increments of 2 each noc until he sleeps all noc.  Autotitrating machines def. have urned there place in the market of CPAP units.  My heart truly aches for those children you are misdiagnosed and are placed on meds for the attention issues and never get the proper treatment.  No wonder our world is becoming so scary.

HI Camaja! Glad to hear about the success with the autocpap. You and I discussed at one point - lack of dreams and apnea. Since your daughter has been using the new machine, has she dreamed? Just curious. I finally got my son's sleep study report (it was done before his tonsilectomy) in the mail. The doc had told me that Caden was having an average of 42 apneas/hour but I was shocked to see in Caden's report that he had 91 apneas/hour during REM! I don't know a whole lot about cpap (we hope my sons apnea has been resolved w/ tonsilcetomy) but the fact that his apneas could increase from 42 to 91 during REM would indicate to me that many children and adults pressure needs would change throughout the course of a night-quite drastically.

On the subject of add/adhd- I totally agree....these poor kids are being put on stimulants. Think about it for a minute, stimulants can make it hard to sleep, so if a child really has sleep apnea and not ADD....the problems with their sleep are being compounded. I want to learn everything I can about sleep apnea, my hope is to somehow help to bring awareness to the school system, even if its just at my son's school. I think parents need to know about this, and there just isn't enough info out there.



Kim

Hi Kimista -- yes, I remember talking with you about the dreams.   Still not much in dreamland -- twice she has woken up and said excitedly "Mom, mom, I think I had a dream!" but still no recollection.  You know, when Maile had the 5-day auto titration study they found that she required 20+cm of pressure - but still has apnea DURING REM sleep!  This, like your sons doubling of events during REM, indicates to me that the deeper the sleep, the more "dangerous" the sleep.  Before auto, her continuous pressure was always between 7-9cm and the number of "events" put her in the mild apnea range... but now we know that was only because the pressure was never high enough to allow her to sleep deeply enough to get REM sleep... so her number of events was fewer because, for all intents and purposes, she wasn't "really" sleeping - even with the cpap. It's an interesting conundrum: The higher the pressure, the deeper the sleep, the GREATER the apnea.  What's up with that!!!  Fortunately, this machine titrates all the way to 24!
 
I do hope Caden's apnea is completely resolved, but I know you'll be following up to make sure!  

I agree about getting the word out - I wish more doctors would consider sleep apnea before resorting to meds.  Sometimes I feel like a one-woman soapbox on the subject of ADD/ADHD.  I tell everyone I know about the difference cpap made for Maile (not to mention my sanity!)  Her behavioral and academic improvements were so dramatic, there is nothing else that could explain the change except a good night's rest!

This is for those that have their children on autotitrating cpap machines.  Did anyone caution you as to any side effects or problems from having your child on high pressures with their machines.  Obviously you are finding these higher pressures are what your children need.  
I am trying to convince our physician to try an auto titrating unit.  We are up to a pressure of 11 cm H2o pr, but still pulling the mask off.  Goes to sleep like an angel and 1.5hrs later, pulls off the mask and we are unable to get it back on.

No, we weren't cautioned about any side effects of high pressure... do you know of any? I think you should tell your doctor that it only makes sense that the pressure requirements would change throughout the night.  My daughter never showed the severity of her apnea in her first studies - but we now know that is because she never slept soundly enough to reach REM sleep.  Now that she finally gets deep sleep, her apnea episodes worsen... but we never would have known that without the auto-titrating study.   Now that we have an automachine, she is finally reaching REM - and hence her pressure requirements are much greater.  According to our physician, REM sleep doesn't typically come until the early morning - just before waking!  At about 4 in the morning Maile's pressure requirements kick up to 18-24 - but ONLY during those early morning hours.  For the first 4-5 hours of the night Maile is only at 7-9 cm, then she gradually requires about 12-15 (at 1-2 a.m.) and the high pressures aren't required til about an hour before she wakes up.  I had no idea that REM sleep happens in the early morning hours - so it is entirely possible that your son needs a lower pressure for the first part of the night.  I remember you saying he was keeping it on for 3.5 hours on the lower pressure, maybe you can go back to a med- low pressure setting when he goes to sleep?  Maile has pretty severe apnea, but virtually NONE for the first few hours of the night.  Our doctor wouldn't prescribe an automachine until he did a titrating study --- and those results made it obvious that her pressure needs varied wildly throughout the night.  Perhaps you can convince your doctor to do an auto-titrating study.  He might be more amenable to prescribing the automachine when he sees the results.  Our autostudy was over 5 nights and made it CHRYSTAL clear that she needed low pressure to start, and high pressure at the end of the night.  We did 5 regular (overnight) studies before the autotitrating study.  I don't understand why they don't start with an auto study -- it makes sense that the pressure needs would vary throughout the night... someday they'll be standard, but in the meantime, you just gotta demand the study.  I can understand doctor being reluctant to prescribe the machine with only the data from a straight study -- but he SHOULD be open to trying an auto study and then prescribing a machine based on those results.  It could be that the 11 is just too high in the first few hours of the night... but not high enough when he gets to REM, kwim?  The other thing is that the exhalation on 11 may be too difficult for him.  The higher the pressure, the harder it is to blow out against it - and this discomfort may be contributing to him pulling off the mask.   Maile has a bipap machine and when she is at 11, her exhalation is at about 7 or so... making it considerably easier for her to exhale against it.