Monday, July 30, 2012

Sleep Study Strikes Again

We got the results back today from Dean's sleep study the other week. I saw the envelope said it was from the sleep center and my heart started pounding like I was opening a college acceptance letter. My eyes quickly zoomed in to the word "abnormal," flashing back to another note we received on May 20, 2009 - "DNA analysis: ABNORMAL."

YOUR CHILD IS ABNORMAL. Yes, thank you, I got the message. Especially irritating when I don't think he's "abnormal" at all, but I understand someone draws the line somewhere...

The good news is that Dean does not have central sleep apnea (CSA) anymore. The bad news is that he has "pediatric moderate residual obstructive sleep apnea." The letter informed us that we would talk about "treatment options" with the doctor at the follow-up appointment that we have already scheduled. Umm, no, I called for an appointment 10 days ago and was told they'd call me back. I'll let you guess whether they did.

A few weeks ago, I was emailing with Dr. Miller about Dean's upcoming sleep study and asked what factors would cause OSA to come back (after all, it went away after Dean's tonsil & adenoid surgery in October). Here is what she wrote:

"The only times I have seen sleep apnea return is (1) if the kid gained a lot of weight (NOT Dean); (2) if the child is on a high dose of GH and the ENT didn't get all of the tissue so it grew back (unlikely as this usually happens over a period of years rather than 1 yr); (3) or if the child has allergies and the stuffy nose along with the low tone is causing the sleep apnea rather than the tonsils/adenoids being a problem."

So, it's looking like door #3. Dean has had a beast of a time with allergies this year, even to the point of developing asthma. All this happened since the last sleep study he had in January, when his OSA and CSA were both down to insignificant levels. Coincidence? I think not...

We'll have to meet with the doc soon and figure out what to do. More than likely, the solution will be a CPAP. I have no clue how we would get Dean to wear it, but I don't think we'll have a choice.

This sleep stuff is so difficult for me because of two reasons:

1. OSA is dangerous. As in it can lead to sudden morbidity in sleep, mostly caused by heart failure. :( People with PWS have a higher incidence of dying in their sleep, so this is scary.

2. I don't function without sleep. I don't mind that I'm tired the next day. I mean that it screws up my brain chemicals and I'm like my bipolar self without medication. It's an unsustainable situation. We need something that will let everyone rest healthily and sufficiently. If you feel like praying, that would be awesome.

1 comment:

Dorette said...

I'm sorry to hear the not-so-good news. We've been walking our road for the past 4 1/2 years, and it never gets easier to hear/read "there is a problem with your son". :-(

Thinking of you! And I also struggle with balancing what is best for one individual vs the needs of other family members. No words of wisdom - just know that you are not alone.