Hello—

I am desperately in need of more info. to help guide me in the right direction regarding my 5-month old baby girl, Evelyn, who has been diagnosed with moderate central apnea with oxyhemoglobin desat.  She wasn't premature but I've been concerned about her irreg./loud breathing and freqent night waking so that got the ball rolling.   In the course of a nearly 7 hour polysomnogram, she had 25 central apneas, 2 obstructive hypopneas, 9 obstructive apneas, and 0 mixed apneas, so her AI is 5 and her AHI is 5.3.  I know that anything above 1 is not good for infants so I'm really concerned.  Her O2 saturation was between 90 and 100   97% of the time, and between 80 and 89   3% of the time.  She went down to 75% (yikes?) with a central apnea/obstuctive hypopnea, but it must have lasted for a very short time since it's not in the above stats. I don't think she has Reflux but this is going to be investigated.  Ped. pulmo. mentioned an MRI, but this hasn't yet been scheduled... seems to be dragging his feet on this.  Now I hear that sedating a patient with a history of apnea for such a procedure can be dangerous?   Ped. neuro called today and now we have a 24 hour EEG scheduled for this Friday so I'm glad things are moving along again.

Evelyn is on an apnea monitor.  It's set to go off only when the apneas are for 20 sec. or more so it hasn't gone off so far (after 3 days/nights)  yeah!

I'm really wondering just how bad this diagnosis is, what might be causing it, if it's ever going to stop so she can get some good quality rest and not have devel.  delays and the other issues I've read about due to unmet sleep needs, etc.  I'm also wondering if I need to be concerned about SIDS, although now with the monitor I worry less about that.  Here she is next to me rubbing her eyes even though she just awoke from a (short) nap 30 min. ago.  I feel so bad and wonder what may have happened during my pregnancy to cause this, as it was an unexpected (menopausal) pregnancy without early prenatal care.


Thank you in advance for any assistance you can provide!!!

Sincerely,
Tammy
(Tammy814)

Tammy,

First, I'm sorry you have had to come searching for this forum, but thankful you found it.

Second, take a deep breath and relax. It sounds like your pulmonologist has a good handle on things and doing all the "routine stuff".

I have a few questions for you and some answers to the questions you asked...

1. Is the EEG for the apnea or for something unrelated?
2. Why isn't the neurologist asking for the MRI?  
3. Is she currently meeting her milestones?

Now for some answers:

1. Sedation for an MRI is dangerous for any child, but with a child with central sleep apnea, it can be especially dangerous. We learned with Isaac that skipping the "paralyzing" drug (Versed here) and just going straight for the anesthesia gas worked much better and he recovered quite nicely in about 24 hours!  Just a thought.  I would also ask for them to do a Central Spinal Fluid Flow Study while they do the MRI. I'm still not entirely sure why they didn't do this sooner with Isaac, but he just had one last week!
2. 25 in 7 hours isn't horrible. Isaac at 5 months was having an excess of 72 with NO obstructive anything.  She probably won't suffer too many ramifications of this and it is likely to be secondary to something else (like reflux) and can be treated pretty easily.  
3. Testing for reflux is perfectly normal with children with central sleep apnea, especially when there is obstructives mixed in.  Make sure they do a pH Probe or a GER scan. DO NOT agree to an upper GI as sufficient testing for reflux. They are terribly unreliable and tend to give a lot of false positives for reflux...
4. Let me explain how reflux affects the central apnea...Forgive me if you already know this..but a lot people don't understand...Basically your brain registers some sort of danger of aspiration (on the reflux) and orders your body to stop breathing for a moment or two and then when it no longer registers the danger it tells the body to go ahead and breathe again. Since it seems some of her hypopneas were followed by apneas, it is perfectly logical to think this is at least some of the cause of the apnea.

It sounds like you have a pretty good team in place. Make sure your neuro is aware of the situation and ask him to order the MRI and CSF study.  Make sure the monitor is set to record at 15 seconds and alarm at 20 seconds. This way they can at least have data that things are improving or getting worse...I am assuming they are downloading it every month or so...

Keep us posted and ask all the questions you like! There are a lot of us here who have been on this crazy journey for a long time and have lots of good insights and wisdom!  You have found an invaluable resource...

Tiffany, mom to Isaac...my amazing and intelligent nearly 3 year old who still has the official diagnosis of "Unresolved Primary Central Sleep Apnea of Infancy"!!

hi Tammy

i hope that you are able to get confirmation and reassurance from doctors that nothing happened during your pregnancy to cause this... i have never read anything suggesting it's related to pregnancy factors or the mother's age.  but IMO you need to hear it from the doctors, as they have met hundreds of families and also read everything there is to read on Evelyn's particular condition.  i don't think they know as much about what causes infant breathing problems as they would like to know too.

what is really cool is that you noticed something was wrong with her breathing, sought help and have had her tested... she is in the very best of hands with you, and with her doctors.  

tammy814 wrote:

... I feel so bad and wonder what may have happened during my pregnancy to cause this, as it was an unexpected (menopausal) pregnancy without early prenatal care.

_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
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37yo female, New Zealand, Mixed SA, AHI 45

Tiffany--

Thank you so much the invaluable information!   You have obviously done your research on this topic and are a wealth of information.  I'm sorry Isaac (and your family) have had to deal with this for so long.  

I'm glad to know Evelyn's doctors seem to be heading in the right direction with this.  Here are the answers to your questions:  
1.)  Yes, the EEG is for the apnea to the best of my knowledge (neuro. ordered it after reviewing the sleep study results).  
2.)  I don't know why the neuro isn't asking for the MRI.  I'll call tomorrow and request that as well as the CSF you suggested.
3.)  As for milestones, I feel that Evelyn is a bit behind, but perhaps I'm just comparing her to my older daughter who was quick to do it all (and I know that I need to stop that.)  Evelyn has not yet completely mastered rolling over, but perhaps it's just because she doesn't care to and hates being on her belly (which is the only way I get her to roll over after placing her on her belly and it seems to be such a grueling task for her to do it just once).  She seems ions away from sitting up independently but I know it's still somewhat early for that.  Also she doesn't laugh spontaneously, but does smile when someone she knows well smiles at her and she's not in her over tired state.  We'll see what her ped. says at her 6-mo. in a few weeks.  

I truly am hoping that this is secondary to something else, like reflux, and can be treated easily.  That would be a complete dream!  Thanks for the warning about Versed and the upper GI.  

I'm curious about setting the monitor to record at 15 sec. for a 5-mo. old.   The pulmo's nurse pract. said that Evelyn's sleep study apnea durations were probably far below that time length, so I think we should have it set for lower than 15 sec. for comparison purposes?  Yes, the woman who delivered the monitor said that she'll come and get the data when the memory gets full.  

Thank you again for shedding much light on this subject and helping to ease my fears and yes, I will definitely keep you posted.  Please keep me posted on Isaac's progress too!

Thank you too, ApneaKiwi, for the positive message about the pregnancy factors probably not being a cause here.

God Bless,

Tammy

Tammy,

I completely agree with ApneaKiwi, that nothing in a pregnancy causes central sleep apnea. There are things that can happen to cause a lot of other stuff, but not this one!

If he ordered an EEG before the MRI, then there is probably a good reason for it.

Sounds like she really doing very well for her milestones and you shouldn't be worried at all. Some kids never do roll over much and just take off crawling one day!

Definitely ask about the MRI/CSF study and the reflux testing...Both will be great diagnostic tools for the apnea.

The 15 seconds is pretty standard, as most apneas are not counted in a sleep study unless they hit the 13 second mark. If you are concerned about that, then ask the doctors to write a new order for it to record at 13 (they won't set it lower than that) and to alarm at 20 (they aren't in danger at 20 seconds).  You might call your DME/HHC to make sure that it isn't already set to those standards...

I think that's it!! Keep us posted and we'll talk soon!!

Tiffany

Tammy, I also have a young child with Central Sleep Apnea. I'd like to share a few points of view as a mom. First don't panic- The situation could be a lot worse. We are so blessed to have machines like a monitor. We have "an alarm" that will sound if our child stops breathing. How many people can say that? I have lost so much sleep over this but now realize it's important for me to trust that machine and get the rest I desperately need too. Two, well hate to tell you but I've had a hard time finding a doctor who really knows how to handle this, we have spent 3 years trying to find the cause to her Obstructive sleep apnea. I didn't even know there was central until she was finally diagnosed 8 months ago. My child is almost 4 and still has to sleep with a monitor. Her condition has not improved but on the other hand it hasn't gotten worse either. She is an otherwise very normal, happy, active child. This condition has not shown any affect on her mainly it's been me who has been affected by the lack of sleep so that is why I tell you to take care of you too. Don't forget to SLEEP you need it too. You can be a better parent if you're properly rested. I had been trying to get pregnant and had prenatal care from the get go so I doubt you did anything wrong-sometimes just the hand we are dealt.