Hi everyone.  We got the results of Emerson's 2nd sleep study yesterday.  I'm not really sure what to think and I'm frustrated with the ENT.  As a reminder, Emerson is now 18 months old and he had a T&A done last October.

I'll start with the good news:  Emerson no longer has obstructive sleep apnea.  

Bad news:  Still has central sleep apnea and obstructive hypopneas.

Here is the info I have:

Total sleep time:  228 minutes (3.8 hours)
Central apneas:  1 in NREM, 3 in REM
Hypopneas:  2 in NREM, 4 in REM
% sleep efficiency:  63.3
Arousals:  10.8 hr
AHI:  2.6 hr
Min %SaO2:  88%  (was 74% on his first study)
Baseline:  97%

The ENT told us he can't do anything else for Emerson at this point so he's referred us to the sleep disorders clinic associated with the children's hospital.  I'm frustrated that he didn't refer us there months ago when I first suspected the central sleep apnea.  Our appointment is 6 months out.

I realize these are not large apnea numbers.  However, when it's your child, it's a lot.  And Emerson has been through so much in his short little life.  He had an episode where he "coded" after one of his surgeries (he stopped breathing, lost his pulse, and had to be revived through CPR).  Is it possible that he suffered some type of brain damage then?  I think he stopped breathing for approximately 5 minutes.  He is otherwise developing normally.  He is talking more and has excellent fine motor skills.  Is this something he could possibly outgrow?  Could it be caused by any of his medications or breathing treatments?  Should I order an apnea monitor?  I'm also concerned about the number of arousals.  What else could cause this besides the apneas/hypopneas? Any insight is helpful.  Thanks.

Sara

Hi Sarah,

I'm glad to hear that some of Emerson's breathing problems have been resolved.  Did they say the deep breath and then not breathing again was central apnea?  I am still waiting (3 weeks) for Christina's post surgery results........

I wish I knew why drs don't listen to us moms, we know when there is something wrong.  I understand your frustration at having to wait for a long time to get sent on to the next step.  I'm sorry that it will take so long for Emerson to be seen, 6 months seems like a very long time.  I hope that he can get in sooner.

I think it is possible that some of his arousals are due to his medications.  When Chris had her first study, she developed large red marks wherever the tec cleaned her skin before attaching the leads (she is allergic to adhesives and has sensitive skin) so I gave her a benadryl to help with the reactions she was having.  On that sleep test she had 200 hypopneas for the night and 90 arousals each hour.  We had a second test 1 week later (tech error....the did not use a pulse ox)....I did not give her the benadryl.  This time she had 117 hypopneas for the night and 1 apnea.....but no arousals.  I think the benadryl caused her to have a worse test result.  I don't think I will be giving her benadryl at night again.

As far as Emerson not having a high number of events, our neurologist said that even 1 apnea is abnormal in a child (we will see how he treats/does not treat Chris when her results are finaly read).

I am having a hard time as well knowing that my kid is not breathing properly and having no one do anything about it.  I also would like to have something to make sure that Chris is breathing at night.  Could you tell your PCP about your concerns about Emerson and ask for help getting something so you could monitor him.

I hope you get some help and answers soon.

Susanne

Hi Susanne.  Thanks for your reply.  His appt is actually 6 weeks out, not 6 months.  Sorry!  The ENT didn't say anything about the deep breath and then not breathing.  He flat out told me there's nothing else he can do for him.  Which I understand, but he could word it a little better!  So we're seeing a pediatric neurologist on March. 7 who is associated with sleep disorders.  Hopefully he can shed some light on the entire situation.

Keep me posted on Christina's results.  I hope you get them soon.  I have no idea why it takes forever.  I work with a lady who did a sleep study and got her results that morning!  

Take care,
Sara

Hi Sarah,

I'm glad that Emerson's apt is in 6 weeks, although that is still a long time to wait.  I hope your new neurologist can help you find what is best for him.  
Chris's sleep study results are apparently delayed by the ice storm in south texas, as well as the post office.  I have been calling the office just about every day...they know me by voice now....and they say the results  have not arrived yet.  They are just going from one side of town to the other, so how long can it take.  It has been one week since they have been mailed, so I asked the neurologist to request a second copy.  I am hoping to get the results soon....I very much want to know if Chris still has a problem.  I'll let you know what happens.

Have a great day,

Susanne

HI SARA
so glad the OSA seems to have gone but sorry hes still having apnoeas

i dont understand alot of that as our sleep studies over here are different and dont have most of that info.

really have no advise for u im sorry. but good luck for ur app in 6 weeks time

matthew has central apnoeas and hypopneas plus 2 others, and he has had all sorts of tests.

i think the best thing to do is wait til u have the app then discuss all ur concerns and go from there.

hope ur all ok
love nat

hi...

I have a similar situation so i know what your going through. My son had his tonsils and aneiods out
when he was 2. He never had a sleep study before though because he had recurrent tonsililtis...that
never went away. Anyhow even after the tonsils were out he was gasping for air and snoring loudly
and making all kinds of noises.
He had a sleep study when he was 2  6 months after surgery and it showed
central apneas about 1.4 per hour....
I had gotten the results by mistake through my regular peditrican before
i saw the pulmingologist...when i read it it said mildly abnormal..there were some
saturations under 90...i think it was 87....he had 11 apnea's  they were mixed and central
when i went for the appt. the doctor said everything was normal...and i said what that
i had seen the results and they said abnormal. he said it was just terminology and he was fine.
anyhow he seems worse then he was now hes now 4.5 years old. he gasps for air...and makes all kinds of
snorting noises...he is really tired iin the morning and hyper in the afternoon and really moody.
anyhow he's going for a sleep study on saturday because i pushed the issue....some people have
said that he should be 0n a Cpap machine..anyhow sorry so long

i know what your feeling cause when its your child you don't want them to be going through all this
just to sleep
staceu\y

Sara,
I know that even slow progress is just not good enough when it's your own child.  When a parent knows there is a problem, we want results RIGHT NOW.  

You are on the right track though, being sent to a pediatric lab.  I feel that there are a lot of labs out there who typically work with adults who occasionnally work with infants, that probably never should.  Infant sleep can be a completely different ballgame.  

As far as what you might expect in your next appointment, it may be a possibility that the lab attempt to treat the remaining events with a very small amount of oxygen.  In babies, (UNLIKE ADULTS), small amounts of oxygen can actually improve and in some cases, eliminate, respiratory disturbances.  That is just one possibility.  Suggestion:  Make sure you communicate All of Emerson's history with the pediatric sleep lab before you go (Get them the results of the first study beforehand, etc.).  It will save you from potentially making two trips there, and hopefully get some kind of treatment sooner.  It's true that it can take labs a long time to get results out sometimes.  This is unfortunate.  However, a child's sleep study is often 25+% longer than an adult sleep study.  It is 1000-1200 pages of cardiac, neurological, and respiratory information that must be acquired by the night technologist, scored by another technologist, and interpreted by a physician before the "true" results can be attained.  So, when someone gets results of a study the next morning, what they are actually getting is the aquisition tech's point of view, not actual results.  

I am going to post a great article on apnea monitors in the main forum.  Apnea monitors are typically reserved for severe cases, in very young babies...so don't let the article scare you.  Babies whom I have seen personnally and done sleep studies on who were on an apnea monitor were very young, often premature, and had apnea so bad that they were being kept in an inpatient setting.  It seems that the ones who end up wearing them at home were previously wearing them in an inpatient setting from the beginning of their life (that's just my limited experience).  You can also read it by using the link here:  

http://www.fda.gov/bbs/topics/CONSUMER/CON00002.html

how r things sara?

matthew has a apnoea alarm. he has had his since october 2005 he was 13 months . the one he has sticks on his belly. we use to have a under the mattress one that we bought but this one broke so the hosp gave us one. they didnt want to by the hops that dx matthew sleep apnoea said he either had an alarm or they admit him as in patient as he couldnt be without one.

the one matthew has is manily used on babies but they dont have a diff type for older children. however this works fine for us and very very rarerly have false alarms (did have to get up a 3am to change his wire and tape as it wasnt picking him up).

i know u can buy some but obv they r expensive and i know the probes r as well.

hope ur all ok

Thanks for all of the great replies.  It is very scary but I'm trying not to worry too much about it until I have more answers.  I mean, I can't do anything in the meantime and I can't stand at his crib all night to make sure he's breathing.  He's got a cold right now with some chest congestion so his breathing has been a little bit more rapid, but still not as fast as it was on a normal night before having the T&A done.  

The apnea monitor article was great.  The description of pauses after deep sighs and movements sounds just like Emerson.  I'm not ready to put my guard down yet, but a little bit of reassurance can go a long way.  

Take care everyone.

Sara

Hi everyone.  Well, we had to reschedule Emerson's March 7th appt with the neuro because my grandmother passed and her funeral was the same day.  It was rescheduled for April 18th but they called the other night and said we could get in this Wednesday.  I'm happy to be seeing a pediatric neurologist who specializes in sleep disorders.  I'm really hoping he can help Emerson.  I'm working on compiling a list of questions to ask him.  Can any of you help me with that from your own experiences?  

Also, does anyone know if there is a link between apnea and trouble eating/swallowing?  

Sara

hi sara
sorry to hear about ur grandmother.

im glad u have got another app so soon and you dont have to wait much longer

matthew has problems eating and swallowing, these have imroved with age but still not perfect. when we was seen by genetics they mentioned something called Pierre robin sequence, matthew has a very small bottom jaw and the apnoeas and the eating was linked but it was said he didnt seem to have PRS.
dont know what Emerson's jaw is like but i think the small jaw is one of the main features.

matthew was under a neurologist b4 the apnoeas where dx.
when they found out his apnoeas where central they went over tests which they feel may help

matthew had a MRI, bulbar EMG which involves needles in certain areas of the body and them checking the responses this also checked matthew jaw area aswell, he had a 48 hour EEG along with a another sleep study. he also saw SALT.
not sure if a videofluscorphy mite be worthwhile? has Emerson had one of these b4?

hope ur all ok
love nat

Hi Nat,

Emerson had a fluoroscopy swallow study back at the end of December and the speech pathologists said that he chewed well and had no trouble swallowing.  He had an esophagram last week because he just continues to get food stuck on a daily basis.  I already limit his diet so much - he can't eat raw fruits or veggies, toast, ravioli, most meats unless pureed, pizza, french fries, chicken nuggets (anything breaded), you get the idea....he can eat pasta and most crunchy things but lately those things have been getting stuck.  So I pushed last week to have some more tests done so the surgeon ordered an esophagram.  The radiologist didn't see a stricture or anything and said his motility was good.  There was a little bit of an indention at his repair site but when they compared the new images to ones from several months ago, they said his esophagus was stretching out on his own and looked much better.  So, I've called the surgeon's office twice today trying to figure out what to do next.  So far, it just appears that there is no physical reason why he can't eat better than he is so I'm just to see if perhaps his eating problems are stemming from something else.  Just grasping at straws, I guess.....

Ahhhhh!!!!!  I'm so frustrated today.  Emerson's neuro appointment was moved up from April 18th to today.  When I got home last night there was a message that they had messed up the scheduling and he was re-scheduled until May 14th!!!  I don't think so!!!  Of course they were already closed last night so I called this morning and we are back to our original date of April 18th.  Geez.....

On a good note, Emerson is having his esophagus dilated tomorrow.  This will hopefully help him to eat so much better.  Wish us luck!!  We need some!!

Sara

Sara,

I hope it helps!!  How long before you will see effects?

Vicki


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

The dilation went smoothly on Thursday.  The surgeon found a part of his esophagus that formed a horseshoe shaped ridge.  He's not sure how it happened but was able to stretch it out so that's good news.  I think he is still a little sore and swollen from it, but overall he is eating very well and ate everything in sight on Friday (he couldn't eat anything prior to his 3:30 surgery on Thursday).  

Thanks for checking on us, Vicki!