So sorry if this becomes a ramble but i have 3 years of questions.

My son was born at 25weeks, 3 yrs ago now. He has CLD and came home on 02. This was pretty quickly weaned down but he's always needed it with every cough or cold.
We have a SATS monitor and after 2 yrs it was thought by the paed that he may have an obstruction.
He was sent to ENT who in turn referred him for a detailed sleep study. This he had and it was proved that he did indeed have an obstruction but his events were mostly Central apnoeas.

He had his tonsils and Adenoids removed last year and it has helped to an extent, he's not as noisy or as congested, unfortunatley it didn't do anything to the central apnoeas.
He had 2 bad "do's" at the beginning of the year when he again needed 02 as his SATS wouldn't even reach the 90's, spending the majority of his time (sleeping) in the 80's or even 70's (constant not dipping)
Upshot to this is he recently had another study done, in the morning after the study i was GUTTED! i hadn't heard a beep or a murmur at all, just typical i thought that he had to have THE most perfect nights sleep when he's meant to be showing what he does.
I just got the report though, and, although i thought his sleep was wonderful he did have "an excess of central apnoeas" it also says how he had "brief but frequent episodes of T-A asynchrony, often preceding central pauses, and perhaps indicating and obstructive element still present." (what's left?)
No frank obstructive apnoeas seen though.
His nadir was only 87 which although IS low i have seen him do far worse.
His ETC02 also had brief raises to 54 mm Hg (don't know what the relevance is there?)

In a summary it says that his breathing remains slightly abnormal but there's no evidence of CCHS and his breathing is safe.

Thing is though like i've said, this was a wonderful nights sleep, i really though i was going to get a report saying how nothing was seen and all is resolved. I'm actually more disturbed now thinking how this is going on now without me knowing. I actually thought he had "bad nights" i didn't realise it was all the time.

Sooooo Do you think the fact that his breathing control isn't right is why he still has a need for 02? and can these apnoeas be causing more problems than just the sleep? He is also hearing impaired(wears aids), has weak leg muscles, and language delay, he's basically like a child a year younger.

Will these apnoeas ever go? what DOES cause it?

We don't have anyone at all looking after this, should i shout and scream for a respiritory cons or do i just carry on as i have for the last 3yrs "dealing with it" I understand that he may well be "safe" but does that mean to just ignore it?

Any help or Info really gladly received, i'm just so bamboozled with it all now.

Thankyou!

Have to appologise, i realize my post really IS infact a total ramble.

Ok i guess i want to ask if any of you know the reasons why your child has CSA?

Do you have any information on whether or not it's something that can be grown out of?

Is it taken seriously by any professionals you have looking after your child? The only paed we have right now is one that deals more with Ollie's delays and hearing problems, should i be looking for more input for more answers?

From the last study my son had his breathing has been deemed "safe" but it really was a perfect night and i didn't expect it to show anything at all. It actually showed quite alot so it's come as a bit of a shock to know he's eventful even on his best nights. Should i just forget about it because this study was deemed safe or should i push for more answers?

Do any of your children suffer greatly with colds etc and need extra 02?

Rachael.

Hi Rachael,

Pediatric sleep apnea posts are small in number here in relation to all the adult sleep apnea posts we get.  So don't get too discouraged if you don't get many replies right away.  

And central sleep apneas are confusing things, since they are a function of the brain, not a function of obstructions in the throat.  Perhaps there's some relationship, but I don't know much about this.  Plus pediatric sleep apnea can be so very different than for adults.

Where are you from, Rachael?  Are you from the UK?  I'm only asking because we have some folks from there who post.


Linda


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Hi Rachel,

Sorry to hear about the tough time Ollie is having.  My daughter has obstructive apnea and hypopneas, so I don't have experience with central apneas.  We are still looking for an answer as to why Chris has apnea in the first place, she has no other things going on that would contribute to it.

Chris is being treated by a pediatric pulmonlogist.  She is also seen by our family doctor, he has NO experience with children with apnea or children on Cpap.  The doctors are confused by her apnea but are taking it seriously.  When she has a cold she does not need extra O2, however we don't have a way to monitor her oxygen levels so she might and is just not getting it.  Our pulmonologist has said we can get a pulse-ox but we have to pay for it.

As for Ollie shocking you by behaving the night of the test, Chris did the same thing.  She slept like an angel and did not move (she has Restless Leg Syndrome and Peroidic Leg Movement Disorder as well).  I too wonder what the test would have shown on a normal night.

I would push for more information and a consult from a doctor who is more qualified to treat central apnea.  I don't know that there is much they can do, but you need to know in your heart that you have done all you can for your son.  

Susanne and her mini-hosehead Chris

We're new to the CSA dx as well so I don't have a lot of answers for you, but my son is followed by a pulmonologist as well as a neurologist for this.  As I find out more I'll let you know.  How many csa's did your son have?  Mine had 55 at 4.  I'd love to know if there was a "normal" scale for that.  Although I'm sure that none of this is normal.  Hope everything goes well for  you.

I'm so sorry to hear about all the Ollie is going through. We are going to get another sleep study done at the end of this month. I'm curious as to what it will show.

All I know is that my daughter rarely has obstructive apnea. They are all hypopneas and centrals. I'm not sure what that means other than it is likely neurological since the body just simply forgets to breathe, Is that right?

Well, i don't know much about sleep apnea in children. I just wanted to lend out some support.

I know this is an old post, but I think it's the first time I've read it and had a couple of thoughts.

1. Causes of central sleep apnea: There can be a few different causes. The most common cause of central sleep apnea is GERD (Reflux). This is actually a "good" apnea, as it prevents your child from aspirating on the reflux. However, there are a number of other causes, too. The other culprit can be a chiari malformation, which is a malformation at that brainstem that can manifest itself with a lot of different symptoms, central sleep apnea being one of them.

2. Doctors: I find that our neurologist and pediatrician takes us far more seriously than the pulmonologist, as they tend to look at the bigger picture and the pulmonologist only wants to see the apnea (and not the slow growth, weird blood counts, low-lying cerebellar tonsils, and some developmental delays).  We meet with our pediatrician this week and are planning to ask him if he has a pulmonologist that he works with and trusts.

3. Growing out: All the docs like to think they will just out grow it, but most of us will attest to the fact that it does not seem to get better with age. Isaac's improved around 6-8 months of age, but was moderate again by 14 months old.

4. Answers: I would ask as many questions as you like. Mom's intuitions are usually right and any doctor that won't at least hear a mom out needs to be fired (by the mom of course). I would also recommend testing for GERD and an MRI, these will confirm or rule out the two most common causes of central sleep apnea. Note that the MRI requires sedation or anesthesia and comes with some risks. Just refuse to leave their side (they can't keep you from staying with them). There is no radiation used in the test, so it is completely safe for you to stand next to the machine and keeping an eye on your kiddo!

I hope this helps somewhat.  Best of luck..Keep us updated!

Tiffany