Tuesday, February 9, 2010

Sleep Study Part II: The Curve Ball

I keep trying to collect my thoughts on this, but I don't think that is going to happen any time soon. Please bear with any rambling, as it is the result of a very concerned and exhausted mother.

Nolan's sleep study found something else, in addition to the obstructive sleep apnea. Actually, this other finding was far more prominent and significant than the other finding.

Nolan has severe central sleep apnea. This is much more serious than obstructive sleep apnea, because it means there is a problem with Nolan's brain. When he goes to sleep, his brain forgets to tell his body to breathe. This happened sixty times during Nolan's sleep study, for a duration of more than ten seconds, and with oxygen desaturations.

For the more technically inclined, here is a list of statistics:

Lowest oxygen level during the sleep study: 79%
Number of obstructive sleep apnea events: 3
Number of central sleep apnea events: 60
Number of hypopneas: 41
Total number of respiratory events (apnea and hypopnea): 104
Sleep efficiency: 69% (poor)
Number of desaturations 3% or greater: 161
Number of desaturations/hour (non-REM sleep): 30.6/hour
Number of desaturations/hour (REM sleep): 41.6/hour

When Nolan's brain fails to tell his body to breathe, his oxygen levels drop and he wakes up, which causes him to start breathing again. Thank heaven the arousal function in his brain is not broken, because the autonomic control for breathing is broken. The official report states:

"The overall respiratory disturbance index was 19.9 (central index: 11.4, obstructive index: 8.5) with a minimum oxyhemoglobin saturation of 79% following a central apnea. Desaturations to 87%-89% were also seen several times following central apneas. Most central apneas were 10 seconds in length. Also, frequent central apneas were seen without arousals and desaturations (that were not scored) were seen. Repetitive central apneas were noted, however not with a periodic pattern. Obstructive apneas/hypopneas were also seen frequently. Mean oxyhemoglobin saturation was 96%. There was no particular worsening during supine or REM sleep. Paradoxical breathing was not noted. Carbon dioxide level was not elevated during the study. Total time of study with oxygen less than 90% was 5 minutes.

These findings indicate the presence of severe central and obstructive sleep apnea (for the pediatric age range normal RDI <1.5). Considering the prominence of central events, a neurogenic cause (i.e. Arnold-Chiari) may be considered. Also, developmental immaturity of the respiratory system may be at play, although he is clearly out of the normal age group range for this finding. If clinically indicated, evaluation by ENT for possible tonsillectomy and adenoidectomy could be considered for the obstructive portion. Clinical correlation is suggested."

Our pediatrician nixed the idea of developmental immaturity as the cause (this is primarily seen in premature babies, and sometimes in full-term infants, but not in 30 month olds). Arnold-Chiari is also very unlikely, because Nolan had a CT scan of his head as an infant and it was normal.

This is an issue on top of the staring spells we have been seeing. The sleep study EEG only uses four electrodes, and is only used to monitor REM vs. non-REM sleep. Because of this, the EEG isn't even mentioned in the report, other than to state the stage of sleep Nolan was in when respiratory events happened.

There are several issues now pointing to a neurological issue, so it is good we have a neurology appointment set up. We see our ENT on Monday to discuss the next step with this particular issue. There isn't much they can do to treat the central portion of his apnea, though supplemental oxygen at night, a biPAP machine, or medication are sometimes used. We will know more after we discuss this with his ENT.

His EEG is scheduled for tomorrow morning, so we will be keeping him up very late and waking him up very early (putting him to bed after midnight and waking him by 5:00am) in the hopes of stacking the deck for observing possible seizure activity.

At least we are getting more pieces to the puzzle, and we know why he doesn't sleep. His erratic behavior after waking from his naps and bedtime is also easier to understand- he wakes up sleep and oxygen deprived. I pray that we can find the cause of his breathing issues, and find a way to manage or solve them.


Drew's Mom said...

Leah, I don't know what to say other than I am happy that you are finally getting some pieces of the puzzle, so hopefully it will be solved VERY soon and that I am praying for an answer that is eaisly corrected. Hugs to you and your family.

Emily said...

So sorry about the scary results. I hope you guys find an answer soon! We've dealt with some pretty scary diagnoses over the last 4.5 years, and the not knowing is always the hardest part. Hang in there!

Pattie said...

That is a lot to digest. I hope that the EEG tomorrow (with possible doc visit!) will give you more answers.

You are truly my hero and an amazing Mom. Nolan is blessed to have you.

Again, email me if you ever need anything.


Terena said...

that is very scary. but you're right, it's good to have another piece of the puzzle.

It looks like Queen Teen has something similar. She had a sleep study done and they found apnea, but because of all her other neurological issues we decided against surgery because her neurologist felt obstructive apnea wasn't the culprit. But I'm pleased to report that it appears Queen Teen HAS outgrown much of her sleep problems. She sleeps much better and I'm considering requesting another test to compare to the first one (she was 7, now she's 14). So your boy may outgrow some of what he's experiencing. The human brain is an incredible thing. He may surprise you in a few years.

Kristen@nosmallthing said...

Wow. What a curve ball. I'm glad you are getting some more pieces to the puzzle, as troubling as they may be.

Praying for you guys. Take care...

xraevision said...

I'm so sorry to hear about these results, but at least you have a way forward with some answers and appointments. I agree that not knowing is worse. Thinking of you and Nolan.

susannah said...

goodness-so much to absorb. i hope that you find out more coming up-will keep you guys in my prayers!

Julia said...

Yikes -- I was alarmed by what you said in your e-mail, and this detailed report doesn't offer much additional comfort, except for the evidentiary value -- hopefully soon you'll get some sort of Diagnosis That Explains Everything. Get some O2 into that boy ASAP, and get some sleep yourself. Remember to take care of yourself even while you're dealing with all this.

Anonymous said...

Oh Leah! I feel for you so very much. The constant worry and anxiety is just so hard to endure, and you have really had more of your share lately. It does seem as though you're all on the path to finding answers, and hopefully solutions as well. I'll certainly be praying for the adorable little guy. xoxo

MB said...

I hope the neurologist will have some answers for you. Thinking of you guys!

Herding Grasshoppers said...

Wow, Leah... what a lot to process, for you all.

But remember this - (and I know it's pretty darn easy for ME to say...) Nolan hasn't changed. You just have more information. He's the same wonderful, bright, funny, loving kid he was yesterday. And,

The LORD your God is with you
He is mighty to save.
He will take great delight in you,
He will quiet you with his love,
He will rejoice over you with singing

Praying that you will not be afraid, and for answers to help Nolan.


AimeeTheSuperMom said...

We haven't had central sleep apnea with Liam that we know of. With the sats you've listed, I'm guessing they'll either give him a CPap or O2. The Cpap was not tolerated by Liam at all. But, each kid is different. The nasal canula has been his lifeline, but he's used to being on it all the time. So, that may be why he tolerates it. I'll do some more research to see Liam's results. I know his sleep study was abnormal, but I need to get more details to remember all of the reasons why.

Mandie said...

Oh, wow. Leah, I'm praying for you! Won't it be so wonderful when its all figured out and you can breathe and enjoy your children with less worries?

The Brights said...

Thinking of you all!

leah said...

Thanks for all of your thoughts and prayers. This is difficult (because we just don't know what we're dealing with), but I know that all the right doctors will be placed in our path and we have a treatment/diagnosis plan in place shortly. Waiting can be so very hard, and right now we are in a "waiting place," until our Monday ENT appointment and March 1 neuro appointment.

rouchi said...

I have few words to say to you after reading your post. God that lil fellow has to go through too much and I am passing on my prayers for you all. I really hope the best of things happen to you.God bless.