Sleep Study #3: Report

We had the official sleep study report faxed to us, because we wanted to see what the sleep neurologist's recommendations were. Since our pediatrician's office wouldn't give us the report, and our ENT didn't discuss the recommendations from the sleep neurologist, we wanted to review the report to see what the neurologist would recommend.

the report is like any other sleep study report. This is the best sleep study he has ever had, but there are still significant issues. A brief rundown of the actual data:

Minimum O2 concentration during sleep: 87%
Average O2 concentration during sleep: 98%
Number of obstructive hypopneas: 57
Number of arousals during sleep: 125
Respiratory Disturbance Index (REM sleep): 20.1
Respiratory Disturbance Index (non-REM): 7.6

For most people, that's a lot of mumbo-jumbo. A normal Respiratory Disturbance Index for the pediatric population is <1.5: Nolan is obviously above this threshold during any sleep stage. He woke up 125 times during the study. The good news is that despite occasional oxygen desaturations, his average oxygen level is great.

He isn't retaining CO2 yet, which is important. Children who retain carbon dioxide effectively poison their systems with the retained gas - Nolan's CO2 levels were 42mm Hg on average, which is in the normal range.

The sleep neurologist's recommendations read:

"Despite improvement compared to previous study (8-9-10), these findings indicate the ongoing presence of obstructive sleep apnea (for the pediatric age range normal RDI <1.5) consisting mainly of hypopneas with associated disruption in sleep architecture and oxyhemoglobin desaturation, especially in REM sleep (RDI: 8.6, and minimum oxyhemoglobin concentration 87%). If clinically indicated, evaluation by ENT for persistent airway abnormality should be considered. If this has already been performed, a return to the lab for nasal C-Pap or BiPap (given history of hypotonia) titration could also be considered. Clinical correlation is suggested."

I called the sleep neurology center and made an appointment for June 21. I want their take on his situation, and advice on doing a C-Pap or BiPap with the presence of persistent reflux.

While I was at it, I called the Cleveland Clinic and started the process to get into the genomics division at that center. Our ENT feels strongly that Nolan does not have a syndrome. I am not sure whether there is an underlying disorder causing his issues or not, but we are not consenting to any more surgery until we can verify that there is no underlying neuromuscular, genetic, or metabolic problem. The Cleveland Clinic has to get financial approval from our insurance company, so we sit with baited breath waiting to hear back from financial services and the genomics department. If our insurance approves the appointment, we could get in as early as late July or August. If nothing else, getting an "all-clear" from a fresh set of eyes will make us feel better and make better decisions for Nolan.