Kamdyn is having a T&A

Over the summer, we requested that Kamdyn have a sleep study done.  I had expressed concern to her doctors on previous occasions that she was a restless sleeper.  They told me that if Kamdyn had sleep apnea, she would snore a lot, she wake frequently, and we would notice her stop breathing.  We didn't really notice those symptoms, so we didn't press the issue.  Once we were told that Kamdyn had an airway abnormality, I knew a sleep study was something I wanted done.

Kamdyn had her sleep study done over the summer.  She had 6.4 episodes of apnea an hour with an average oxygen level of 89%.  At her appointment with the ENT last week, we were told that, in children, anything over 5 episodes of apnea in an hour is severe sleep apnea, and anything under 92% oxygen is also abnormal. 

Kamdyn has an airway abnormality called laryngomalacia.  This explains the recurring croup, frequent cold and sinus infections, and stridor in her breathing, and most likely a factor in her sleep apnea.  To treat laryngomalacia, they have to make more room in her airway.  The first option for that is to remove the adenoids.  Removing adenoids is the easiest option with the best recovery possibilities.  When Kamdyn's doctor looked at her x-rays from May (when she had tubes) and saw that her adenoids are not enlarged at all, she said that only removing the adenoids would not make enough room.  So she recommended removing the tonsils and adenoids. 

If removing the tonsils and adenoids does not improve the stridor in her breathing, which she can hear upon examination, the next step will be a procedure where they clip areas of the larynx to make more room. 

So there are two morals to this story.  First of all, don't accept Down syndrome as being a reason for illness. There really may be another explanation, like laryngomalacia.
And second, get a sleep study.  The American Academy of Pediatrics Guidelines for children with Down syndrome says, "There is poor correlation between parent report and polysomnogram results. Therefore referral to a pediatric sleep laboratory for sleep study or polysomnogram for all children with Down syndrome by 4 years of age is recommended."  In other words, it's hard for parents to know sometimes, like it was for us with Kamdyn.  It wasn't the most pleasant night of my life, but Kamdyn had hers shortly after she turned 2, and she did fine.  We waited until she fell asleep to hook her up, and she slept through the night after that.

 

We don't have Kamdyn's surgery scheduled yet.  We decided to have a sedated ABR (hearing test) done at the same time, because we want to get a better picture of what her hearing is.  Since the ENT and the audiologist have to coordinate their schedules for that, it takes longer to set up.  It also appears that Kamdyn's left tube is blocked, so the ENT will replace the tube while she is in there, as well. 

 

And if you hung in there to read that whole long schpeel, here's a little reward: