Wednesday, July 18, 2012

Because She Has Down Syndrome?????? A Medical Vent...........

When K was about 18 months old, I mentioned to her Dr.  that she had started to wake up a lot during the night & that her breathing could always be heard - not exactly snoring, but we could always hear her. She had never had any problems with tonsillitis, ear infections or anything like that.  Her Dr. recommended a level two sleep study which indicated (moderate or mild - I can't remember) sleep apnea.

 K's next appointment was to an ENT.  For the purpose of this story, lets just call him Dr. Scalpel Happy. Knowing that we were hoping to avoid a surgery if possible, Dr. Scalpel Happy suggested that K's apneas could be caused by reflux so he wrote her a prescription for Prevacid. I really don't think he expected it to make much  difference & neither did I.  I decided to give it a try because although I try to avoid medications when possible, K obviously was not sleeping well & a reflux medication was probably preferable to surgery.   Within one week of being on reflux medication, K slept through the entire night for the first time in her life & was suddenly breathing so quietly that I found myself getting up numerous times in the night to make sure she was still breathing.

Upon returning to Dr. Scalpel Happy's office a few weeks later, we reported the dramatic change it had made in our daughter's sleep  habits.  I fully expected him to drop the surgery idea entirely, so I was dumbfounded when he replied, "That's great, but I think we need to remove her tonsils & adenoids anyways because she has Down syndrome."  I have no problem with a surgery that truly is necessary, but "because she  has Down syndrome."?  I have never heard of an extra chromosome being an indicator for a tonsillectomy!!!!!!!!  I asked for more time to think about it, & in the meantime, I contacted a local company that does overnight pulse oximetry studies & arranged a study on my own.  The results did not indicate any signs of sleep apnea while she was taking the Prevacid.  Dr. Scalpel Happy was furious that I had initiated my own study, but had to agree, especially when he ordered a 2nd study that also proved normal.  K was able to avoid an unnecessary surgery & although I'm not very popular in Dr. Scalpel Happy's department, it was well worth it :)!

K was also started seeing a new pulmologist during all of this. During her first visit, she asked for some history including the above story & when I repeated the Dr. Scalpel Happy's comment, she rolled her eyes.  I wanted to jump over the desk & hug her! I knew I had found a medical professional that I would be able to work with:).  She still sees K today & has always been wonderful to work with.  I appreciate her common sense  & down to earth attitude. It can be tough to go against the "experts" & I was so glad to find an expert who agreed with what my mommy's instincts had been telling me all along. In the meantime, we no longer see that ENT that a good friend & I now refer to only as "Dr. Scalpel Happy"  Both of our daughters started seeing a new ENT shortly after we both had very different but equally negative experiences with Dr. Scalpel Happy - hers involved his recommendation to do a sedated biopsy including a multi day hospital stay when a swallow study would give the same results!!!!!  Really, is that reasonable???????? 

UPDATE:  I wrote this a couple of years ago & K still sleeps very well & does not snore unless she has a bad cold. She was released from the new ENT's care quite a while ago. K will be having another level 1 study done later this summer  to because her pulmologist wants to be sure that everything is still going well.  She will likely release K from her care after this sleep study. Of course I do plan to have a sleep study done periodically. Sleep apnea can cause a lot of problems & it is something that we need to be aware of & treat when necessary.


  1. You are such an in-tune mommy, and I can't tell you how much I appreciate you sharing all you've learned and done along the way.

  2. Great work doing your own research and avoiding an unnecessary surgery! Is she still taking medicine for acid reflux? Levi's ENT prescribed him a medicine for it but gave it over to the pediatrician to regulate dosage. The pediatrician took him off of it. Hard to know what is best. Do you have any thoughts?