Hi all.  My 5.5 year old daughter has sleep breathing issues since she was a young baby with no clear apneas.  She recently had another sleep study done while she was inpatient for VEEG. (ruling out nocturnal seizures)  She has nocturnal myoclonus (all muscles and full body twitches).  She only has one central apnea and one hypopnea.  The report mentions multiple post arousal centrals.  She had 104 arousals associated with snore/snort with an arousal index of 15.8.  Her oxygen levels were normal but her end tidal CO2 levels were CLEARLY abnormal!  SHe spent 72% of sleep time (total 6.5 hours) > 45 mmHG..... Spent 18.5% of sleep time > 50 mmHG  .... and had PEAK CO2 > 60 mmHG in all sleep stages and wake stages.  Her highest reading was 62.4 mmHG recored while AWAKE.

Pulmonary thinks this is neurological...Neurology says they do not know what to do.  I THINK IT IS OBSTRUCTIVE HYPOVENTILATION SYNDROME which children can have with normal saturation.  I was under the understanding that elevated CO2 levels should be stabilized with CPAP.  I am getting nowhere with her docs because they think there is a brain componet (she had a normal MRI and MRS).....

DO you think they are making too big of a deal out of this?  SHould I push for cpap?  Any input would be great! Thanks!

Hi karalea!

I am not a doctor and certainly not an expert, but I am not able to turn up any concrete evidence that CPAP will treat end tidal CO2 levels.  Rather than push for a CPAP, I would encourage you to continue your search for specialists with experience in cases such as your daughter's.  I recognize this is not easy to do, but making a ton of phone calls to the major hospitals and universities with focus on pedatric units, could yield an answer.

I'm sure you have seen several doctors by now, but clearly your daughter's situation is not ordinary.  Depending on where you are located, there are probably not that many who are really familar with your daughter's symptoms.  Unless you happen to live in an area where the top specialists are located.  So the search may have to be across the country.

If you haven't already, you could try a google on pediatric central hypoventilation syndrome and see if any of the information supports your suspicions.  If it does, perhaps you can also locate a specialist or researcher who is concentrating on that disorder and get your daughter evaluated by them.  

I wish I had more to offer.  Perhaps someone else here has more familiarity and can post you some additional information and ideas.

Blessings,
--pseudonym

If you have not had your child's sleep study done at a pediatric sleep disorders center, you should have it re-done.  There is a registry, and they are located all over the country (I know there's one in Boston, Chicago, Cincinnati, Michigan, and Stanford, for instance).  A word of caution: insurance may not pay for these studies. BCBS did not pay for ours (either one).

Their criteria to cover sleep studies for sleep apnea is very rigid, and quite archaic.  (It still uses the apnea diagnosis based upon ENT visualization of tonsils, followed by tonsillectomy.  The pediatric sleep center told us that tonsil size has been proven NOT to be definitive in ruling in or out sleep apnea (and it was not in our daughter's case) - so you get missed sleep apneas and unnecessary surgical procedures as a result!

My daughter, now 7, was tested at age 5 at a very respected hospital.  I did not know at the time there were specialized pediatric centers.  Her results came back "inconclusive", but it was the end tidal CO2 which made me uneasy:  it was never in the normal range the entire night! (A subsequent study put it at greater than 50 over 97% of the night).  Because our daughter was struggling with psychiatric issues, and at such a young age, it was important to us to make sure this avenue really was a dead-end.

We forwarded the report to a pediatric sleep center, they agreed to see her as a patient and wanted to re-do the test.  The results were SIGNIFICANTLY different (and apparently, these test results are supposed to be consistent).  I also found the physicians extremely articulate regarding what was "normal" in kids, what caused "abnormal" results, etc.

As a result of the 2nd study, my child went from an apnea index of 3.1 to 13+, and the center recommended tonsils/adenoids out.  Because of this new index number, the surgeon who had not been comfortable performing the procedure previously agreed to do so.  We had been cautioned there is no established link between sleep apnea and psychiatric/behavioral issues, and her index number, while definitive, was only moderate.  But in our daughter's case, once her tonsils were out and the apnea (and whatever impact it has) resolved, all of her psychiatric issues disappeared as well. She has been medication-free, 504-free in school, insomnia-free, and enjoying life as a 'normal' 7 year old.  

Don't stop until YOU are comfortable in your gut that what you've been told makes sense.