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.