Finally!  A place I may get some help.  :)  
My 2-year-old ds Joey was diagnosed w/ sleep apnea while in the hospital for an asthma flare up.  The first night he was there his oxygen levels dropped into the low 70s while he was sleeping and his heartrate became slow (low 80s) and irregular.  Same thing happened the next night.  No problems while he was awake though.  He was released with a sleep apnea monitor and a pulse/oxygen monitor for home.  He sets off the alarms at least 2 to 3 times a night.  He had a sleep study done, but while we were waiting for the results, he was hospitalized with pneumonia.  Just like always, he dropped his levels, but this time he wouldn't wake up w/ normal stimulation.  Scared the heck out of me and the nurses!  The nurse was able to wake him up by digging her knuckles into his chest.  From what they could tell, the Robitussin with codeine they gave him made the apnea worse and that's why it was so hard to wake him up.  

We got the results of the sleep study, which showed he had central sleep apnea, not obstructive.  His apnea spells only last about 10 seconds, which is normally not a problem, but in that short amount of time, his oxygen levels drop into the low 70s.  The doctor who read the test said she has never seen someone's levels drop so fast.  He recovers immediately though.  They just can't figure out why his levels drop so fast.  They did some genetic testing, which we are still waiting on the results of.  We do know that the test for centralized hypo-ventilation syndrome came back normal, which is a good thing.  From what we've been told, central sleep apnea is almost always a sign of some other type of disorder.  Could the central apnea spells be caused by his asthma?  What types of disorders can cause this?  He also has quite a few developmental delays and sensory issues.  I have to wonder if it is all connected somehow.  

All the doctor's we've talked to are stumped.  They do not have much experience w/ central sleep apnea in children and none of them have ever had a case like Joey's.  We are having a second sleep study done on July 7th and I have a feeling that after that we will be refered to another doctor.   I just don't know what we should be doing at this point.  THe doctors don't know much about it, so I'm trying to do all the research I can, but there isn't much out there on central apnea in kids.  Does anyone here have any guidance for me?  Or maybe know some more about this and what we should be looking at or which direction the doctor's should be pointing?  Are there specific disorders they should be testing for rather than shooting in the dark and hoping for a hit?  It's all very frustrating, and frankly scares me.  I want to know what is wrong with my son and how I can help him.  
Thanks  :)


_________________
Tracey

Tracey,

I can appreciate your frustration and anxiety.  

As he does have asthma and a sleep disorder, you might try contacting National Jewish Medical Center in Denver.  They are the leading respiratory facility in the country.  They have a toll free number and might be able to help point you in a direction.

1-800-222-LUNG.

I can personally say that before going there, my asthma was completely out of control and they got it under control.  They do have onsite sleep docs as well.

Keep us posted on his progress!


Regards,

Tracey,
I'm sorry you're dealing with this, I know it's scary when it comes to our kids being sick.  I recently found out I have SA and I think it's the Central type because I don't snore or have any of the risk factors for the obstructive type.  I've done LOTS of web searches and you are right - information on Central SA is difficult to find.  What I did find was that the central type is rare in otherwise healthy people.  It is typically caused by severe trauma, especially to the brain, or is a symptom of congestive heart failure.  Everything I read corroborated this - that it is most commonly in people who are severely ill or otherwise 'disabled'.  I don't know if asthma is connected to that, but it sounds like asthma would be more connected to obstructive SA.  
All I can say is continue to research this.  Hopefully you will get some support and possible answers through this site.
good luck!

Mary

tracey wrote:

Finally!  A place I may get some help.  :)  
My 2-year-old ds Joey was diagnosed w/ sleep apnea while in the hospital for an asthma flare up.  The first night he was there his oxygen levels dropped into the low 70s while he was sleeping and his heartrate became slow (low 80s) and irregular.  Same thing happened the next night.  No problems while he was awake though.  He was released with a sleep apnea monitor and a pulse/oxygen monitor for home.  He sets off the alarms at least 2 to 3 times a night.  He had a sleep study done, but while we were waiting for the results, he was hospitalized with pneumonia.  Just like always, he dropped his levels, but this time he wouldn't wake up w/ normal stimulation.  Scared the heck out of me and the nurses!  The nurse was able to wake him up by digging her knuckles into his chest.  From what they could tell, the Robitussin with codeine they gave him made the apnea worse and that's why it was so hard to wake him up.  

We got the results of the sleep study, which showed he had central sleep apnea, not obstructive.  His apnea spells only last about 10 seconds, which is normally not a problem, but in that short amount of time, his oxygen levels drop into the low 70s.  The doctor who read the test said she has never seen someone's levels drop so fast.  He recovers immediately though.  They just can't figure out why his levels drop so fast.  They did some genetic testing, which we are still waiting on the results of.  We do know that the test for centralized hypo-ventilation syndrome came back normal, which is a good thing.  From what we've been told, central sleep apnea is almost always a sign of some other type of disorder.  Could the central apnea spells be caused by his asthma?  What types of disorders can cause this?  He also has quite a few developmental delays and sensory issues.  I have to wonder if it is all connected somehow.  

All the doctor's we've talked to are stumped.  They do not have much experience w/ central sleep apnea in children and none of them have ever had a case like Joey's.  We are having a second sleep study done on July 7th and I have a feeling that after that we will be refered to another doctor.   I just don't know what we should be doing at this point.  THe doctors don't know much about it, so I'm trying to do all the research I can, but there isn't much out there on central apnea in kids.  Does anyone here have any guidance for me?  Or maybe know some more about this and what we should be looking at or which direction the doctor's should be pointing?  Are there specific disorders they should be testing for rather than shooting in the dark and hoping for a hit?  It's all very frustrating, and frankly scares me.  I want to know what is wrong with my son and how I can help him.  
Thanks  :)

Tracey,

Obviously very worrying. Central apneas are usually associated with the brain forgetting to instruct the body to breath. If they are definitely central apneas you might be better with a neurologist as distinct from a respiratory specialist.
Usually apnea (obstructive) in children relates to large tonsils and/or adenoids. Developmental delays seem to point in the direction of neurology, however disrupted sleep will also have this effect.
I'm not terribly up to date on this but you might look under Cheyne-Stokes Respiration. Some of the symptoms are similar.

I am sorry I can'y be more helpful.

Daniel

Tracey:
I just came across your post and I too understand your concern and anxiety.  I manage a Sleep Laboratory in the Northeast U.S., we test children down to about 12 months of age, and there's a ton of things to be said about this case already, but let me just hit a couple high points.
1.  I would look at the raw data of the sleep study itself.  Obstructive sleep apnea can sometimes appear to be central because the sensors did not pick up the signals properly.  In children, though, this is usually unlikely, but since you have a repeat sleep study scheduled I wondered if that's the thought behind it.
2.  Were end-tidal carbon dioxide levels (ETCO2) monitored?  These are essential in children, but that may be the hypoventilation parameter you were referring to, and has or will be done.
3.  The 10 second rule for apneas refers to adults.  An apnea in a child is usually scored when 2 successive breaths are missed, so the time could be considerably shorter.  In other words, a 10-second apnea in a child is a pretty long apnea.
4.  The oxygen drops are VERY significant.  Children with OSA usually do not have significant oxygen desaturations.  Or put differently, oxygen drops that low are of GREAT concern.
5.  However, as you mentioned MOST IMPORTANTLY, central sleep apnea is a symptom of something else, and since everything that causes central sleep apnea in children is neurologic in origin, I would recommend seeing a pediatric neurologist if you haven't already taken that route.  Especially with the other issues you mention.
I'm sure you and your physicians have accumulated a mountain of data on your child already, and I know my few comments are woefully inadequate.  I wish you luck in sorting this out and getting to the bottom of this, and if I can be of any help let me know.
sleepydave

tracey i can understand your fustration my duaghter who is nearly three stopped breathing when she was 2 and half weeks old I took her to the hospital and they told me i was a over bearing mother and had nothing to worry about  even though she was monitored overnight and set the alarm off four times we were sent home and told it was all normal so for 12-18 months every night i listened to her stop breathing for 10-15 seconds eventually i had enough one night after another episode so i went to my local doctor who reffered me to the hospital when we got there they said the same thing as before i got very angry and finnally they agrred to keep her in over night.  The next day the head peadiatrician came to visit her as all the other doctors were stumpped as luck had it she was asleep and he found she had enlarged adenoids because of her age they were not taken out. then when miekala turned 2 they were very quick to take them out and had her nose scrapped for any future sinus and hayfever( that never worked she gets both constantly) any way when the apnea continued i was back at sqaure one again and her gasping for breath and choking is getting worse but because she only does it 5 times a night and stops breathing for 15 seconds not 20 she is not classed as having apnea in the doctors eyes i have invited them to se her when she is asleep but they refuse so as i keep pushing to have her tested and diagnosed properly you keep on going with your liitle one knowing that there is support out there

Hi everyone, Tracey I think we are in the same boat.
My 2 year old has had sleep aponea since he was born. He was fitted with a nasopharyngeal tube at 4mths to be worn all the time and had his T&A removed at 1 1/2 yrs.  It is unclear whether he has central sleep apnea or obstructive. He is under the care of resp consultants, neurologists,genetisists and a general paed.  It was thought that his problems might clear up when his T&As were removed but they have remained the same.  He is a bit of a genetic mystery-a lot of strange features and characteristics and poor muscle tone (didnt walk until 2 1/2) which all contribute.  At the moment we are waiting for SOX9 gene test results back to show if he has a condition called Acampomelic campomelic dysplasia and were informed today that they would like him to have a CPAP machine. I am really not looking forward to that as they have had to halt his last 2 sleep studies because he wouldnt go to sleep and kept ripping the wires from his face (he has a learning delay and a fear of things on his face, which is understandable when you consider we put a tube 9 cm up his nose at 4mths old). Hope to hear how you are getting on soon. Good luck.