My son is 16 months old.  When he was about a year old, I noticed that he stopped breathing while he slept for approximately 10 seconds.  We already had an appointment with an ENT due to lots of ear infections, so I talked to him about how I suspected sleep apnea.  He used a scope in the office and said he does have enlarged tonsils and adenoids but wanted to do a sleep study to verify what I was noticing.  So we did the study and the ENT gave us the results as obstructive sleep apnea and hypoxemia and said he would benefit from doing the T&A.  So Emerson had that surgery at 14 months old.  Well, recently, I noticed that Emerson will sigh real big in his sleep then not breathe for approximately 5 seconds.  From what I've researched this is a symptom of central apnea.  So I called the ENT to ask for a copy of the sleep study results.  To my surprise, it said he had 18 NREM central apnea events and 0 obstructive in the 6 hours recorded.  The doctor's interpretation on there says the findings indicate obstructive with hypoxemia.  He had 18 central apnea and 10 hypopneas.  His SaO2 dropped to 74% which I know is really low.  I'm shocked that the ENT never mentioned anything to us about the central apneas.  Am I missing something?  We saw the best one in our area and it took several weeks to even get an appointment so I'm hoping he wouldn't withhold info from us.  

We are in the process of scheduling another sleep study (which the ENT wanted to do anyways as a follow up for the T&A).  Here's a little background on Emerson:  born with esophageal atresia and tracheoesophageal fistula (birth defect where his esophagus doesn't go all the way to his stomach and part of it attached to his trachea).  This was repaired when he was 3 days old.  As a result of this, he has acid reflux and mild tracheamalacia (floppy trachea).  He often has trouble swallowing foods as well due to the narrowing where his esophagus was sewn together.  

From what I'm describing, does anyone have any insight as to why he stops breathing after sighing in his sleep?  He does breathe much better since the T&A (went from 40-50 breaths per minute to 25).  But I'm obviously disappointed and scared that his apnea is not "cured."  Thanks in advance for any help.

Sara

hello sara
welcome to you
i have no experience of OSA, but my son matthew has central sleep apnoeas diagnosed at 14 months (hes now 2 1/2).
matthew also suffers from periodic breathing, hypnoeas,and hyperventilation.

74% is very low did they say this drop in 02 was due to  obstrcution? has he had a sleep study done since the op?
from my expeicne and have just psted this on anoter topic we have always been told a apnoea for cuase of concern is over 20 seconds long. alot of people have central apnoeas and its normal becuase it dosent last long enough to be considered a serious apnoea.

did they say how long his cental apnoeas lasted.
im very surprised thyw havent arrnaged another sleep to find out if the T&A has worked.
where abouts do u live?

matthew also has severe reflux, and this was first noted to be the cuase of his apnoeas, so it could be the cuase of emerson?
i know matthew sighs after apnoeas but i think some children do it as a deep breathe sort of thing then just take longer to breathe again.
but im no expert and as i said so i cant give u 100% accurate advise just what we have been through and been told,

i think another sleep study is the best nxt step.
is hes reflux under contol by the way?

Keep the Sleep Study appointment to document, for peace of mind if nothing else.

The time frame you mention, though, may only be a common phenomenon where the slight increase of blood oxygen may delay the next breath, which are triggered by special "sensors", if you will, that tell the body when and how fast to breath.

Since he has documented sleep apnea, has had the T&A, and still showing questionable events, I would most strongly recommend, again, that you keep the sleep study.

I'm hoping, though, that everything turns out well for the both of you.


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Thanks for the replies.  We meet with the ENT again on the 27th and I'm prepared to ask all types of questions regarding the last sleep studying showing central apneas.  We also have another sleep study scheduled for Jan. 7th.  

They felt his drop in oxygen during the last study was due to obstruction.  But again, he has tracheamalacia which is where weak parts of his trachea actually collapse.  The doctors say it's mild so it shouldn't be the cause of any apneas.  

We live about 15 miles outside of Nashville, TN so we use Vanderbilt Children's Hospital for all of his medical issues/surgeries.  It is truly a wonderful facility but we've spent more than our fair share of time there!

Emerson has always had "silent reflux."  He's never spit up a day in his life!  So it's hard to know if it's under control all the time.  He's tried various medications since he was born but right now he gets 15 mg of Prevacid before dinner.  The ENT said his throat was red and was probably due to relux but every swallow study we've ever done never showed any reflux.  Sometimes I hear him gulp real big and I can only assume that's when he's refluxing.  The ENT also said reflux may be the cause of his apnea but his tonsils were so large (and adenoids were abnormally large for a child his size/age) that they needed to be removed before moving on.  I know there is a 24 hour pH probe test that can measure how much they reflux, but I'm not sure if we need to do that just yet.  

What do you do about your child's central sleep apnea?  

Thanks for your help.

Sara

hi sara
well ist good u have an app on 27th i would make a note of what u wnat to know so u dotn forget anything, i always have so much to ask i always forget so writting it down will help alot.

Matthew is on 4 meds for his reflux and none r helping, hes is also silent reflux we know he isnt happy as he constantly complains of stomach ache, had terribel wind etc

there r a number of tests to check for reflux u have the ph study which i feel is the most accurate, u have a video fluscopry which looks at the swallow and then u have a upper GI and this looks to make sure everything is ok in the stomach and osephagus, then u have more detailed tests like a endoscopy.

matthew is on a apnoea alarm which the hospital have given us, this goes off when he stops breathing, theres been 2 occasions hes needed resus where he hasnt started on his own, sometimes he either self corrects or just needs poking or moving to get him breathign again,

hes apnoeas vary from night to night, sleep study reports, showed 285 apnoeas in one night, then another showed 140, then 89 so hes numbers r up and down no signs of improving,

hes alarm can go off sometimes every 5 mins and when he sleeps for 12-13 hours its very draining,

i would keep on at the hosp til u get answers u r happy with.
good luck

my son (2 years old) has silent reflux and like yours is never sick with it. We have been told that he has mild obstructive apnoea from the sleep study ( when he hasd a good night - typical !) and that paed dosnt think reflux can cause anoeas. His other 2 specialists ( gastro and ent doc) do however and since he has been put an the max dose ( 2omg) of omaprazol and gaviscon and motillium his apnoeas (and sats)have improved dramatically although we still have drope into the low 80's so they are still not normal About one day evry 2 weeks his sats are great with no apnoeas so its a real random thing. We made the mistake of trying to reduce the omeprazol and his stats went terribly bad so I am sure the reflux causes apnoea. In fact if he is burping and complaining of a funny taste in the day I know he will have a bad night.  I had a ph study a year ago and was told it was ok but now they say both those and the videofluroscopy can be inconclusive sow I think its hard to have actual proof.

We went to the ENT last week and explained that Emerson still has pauses in his breathing while he sleeps.  After describing that his chest and abdomen don't move at all, he said it's probably central apnea.  He didn't send us away with any sleep monitors or anything but we have another sleep study scheduled for Jan. 7th.  

I'm terrified that there's something terribly wrong with Emerson's brain now.  He seems so normal in every way (with the exception of his birth defects).  We recently did another video fluoroscopy test to see how well he chews and swallows and found that he aspirates thin liquids (goes into his airways) so now we have to thicken everything.  A lot of kids born with his birth defect have to thicken their liquids so I don't think that's a big deal.  However, I know that the same central brain problems that cause swallowing problems can cause central apnea.  At least I think they can.  I'm trying not to think about too much about it until we have some definite answers.

When your kids have an apnea episode, how long does the breathing stop for?  Emerson's has lasted anywhere from 5 to 12 seconds.  Is it true that it's not apnea unless it's 20 seconds long?  I think anytime our children stop breathing is a cause for concern.

Thanks for all of your help.

Sara

hi sara
glad the ENT has booked in another sleep study good luck

please dont worry to much that there is something seriosuly wrong with Emerson brain

Matthew was dx at 14 months with central sleep apnoea and i thought OMG brain related thinking all kinds of horrid things. its where the central respiratory drive in the brain forgets to send signals down to breathe.

Matthew had many Neuro tests to try and find out why hes resp drive wasnt functioning properly he had MRI. 48 hour EEG, Bulbar EMG.
none of these showed a problem they look at the MRI to see if there is any damage or anything which doenst look right which could explain the problem but noting has been found so we do not know y matthew has it.

they have mentioned caffine to us which is used in very prem babies but they do not feel it would work for matthew at 2 1/2. sometimes low flow 02 works but again becusse they do not know y matthew has his problem its abit impossible to treat.

Matthew also has swallowing problems Epiglottic undercoating. but this was out down to his reflux not to his brain related apnoeas.

with regards to the apnoeas and times, i agree any period of stopping breathing is a cuase for concern, but u would have to stop breathing for over 3 minutes i think it is to start causing damage to the brain.

Matthew apnoeas vary in times, our local hosp have said an apnoea is a period of breathing over 20 seconds and if u look on the internet that is what most say. however some specilist say an apnoea is over 10 seconds. so its abit confusing.
i do know they very rarely take it serious enough unless it is lasting over 20 seconds. i think anything below is classed as either periodic breathing (which is another of what matthew has) or juts normal childhood breathing and only becomes a problem when it lasts over 20 seconds.

Matthew longest apnoea lasted about 2 minutes, this is where he needed resus.
when u notice he has a apnoea what do u do?

my advise now would be to keep a diary of events between now and the 7th write down what time u notice the apnoeas, how long they last, hes colour, if he corrected himself.

matthew does self ressolve, but then there r far to many occasions when he dont and hes blue and needs stimulation

has Emerson ever gone blue?

also another thing Matthew apnoeas get bad when hes ill, at the mo hes been having bad apnoeas for 6 days now i mean worse than usual like having over 30 a night probably more, i knew by this he must of been brewing and yesterday he started with a bad chesty cough. he has asthma already so gets it worse.

well hope i have helped and not gone on to much
but dont just go by what i have been told diff hospitals areas have there own idea of what is an apnoea

good luck

Emerson always starts to breathe again on his own.  I usually notice his apneas when I give him his breathing treatment and then just rock him for awhile.  I do this every night after he's asleep (it's easier to do the treatment this way).  

Emerson had an episode when he was 7 months old after one of his major surgeries where he stopped breathing and "coded."  He had to be revived, and although I remember the episode all too clearly, I have no concept of time.  If I had to guess, I'd say he stopped breathing anywhere from 3-5 minutes.  They didn't feel like there was any brain damage at the time but now I'm wondering if that caused something.  

Thanks for the encouragement.  I'm trying not to get too worked up over something I have zero control over but when it comes to your children, that's so hard.

I'll keep you posted on what happens.