A New Pediatric ENT

Since Matthew's birth, we have seen several doctors other than the pediatrician - pediatric cardiologist, pediatric opthamologist, and pediatric otolaryngologist (ear, nose, throat or ENT specialist). There are many good pediatric doctors, but I personally like to specifically seek out the ones that are highly regarded by other parents who have kids with Down syndrome (and covered by our insurance). For me, that is an indicator that these doctors understand the nuances of medical care for kids with Down syndrome.

Questions for the Pediatric ENT
At Matthew's first appointment with the Pediatric ENT, we had many questions, as most new parents of a child with Down syndrome would have. Matthew was 6 months old.

Does he have fluid in his middle ears?
Fluid in the middle ear interferes with the vibration of the eardrum and reduces hearing sensitivity. The eustachian tube, which is located between the middle ear and the back of the throat, controls air pressure in the ear and drains fluid from the middle ear. When the eustachian tube is not functioning properly or is blocked, there is an increased risk of ear infections and fluid can be retained in the middle ear. Basically, any sounds that Matthew hears would be distorted, likened to hearing underwater. What a huge setback this would be for speech and language development if he was unable to hear properly!

A tympanometry was performed to test his hearing. This is an objective type of hearing test where a plastic probe containing both a transmitter and a microphone was inserted into Matthew's ears, one side at a time. It was non-invasive, not uncomfortable and it was over in a few seconds. The probe creates a vacuum seal and thus changes the air pressure in the ear. The transmitter in the probe sends sounds down into the inner ear and the microphone measure and records the vibrations the hair cells make in response. The test revealed that he may have some fluid accumulated in his middle ear. A repeat test 3 weeks later revealed the same results.

Do kids with Down syndrome tend to have an overproduction of ear wax?
At 6 months, Matthew's left ear was completely blocked with earwax. Removing the earwax was an ordeal in itself. Restraining him in the exam chair and listening to him scream while the doctor scooped the ear wax out was just so heartbreaking. I couldn't believe how much ear wax they dug out of his little ears. Thankfully, we haven't had to get his ears cleaned since then.

Will he need ear tubes and when should that be done?
We had two options: 1) wait and see if the fluid would eventually drain from the middle ear or 2) Bilateral Myringotomy Tubes in a couple of months. After doing our research, we decided we were comfortable with the more aggressive preventive treatment. So Matthew underwent surgery when he was 8 months old. It was a 10-15 minute outpatient procedure where he needed to be anesthesized. Not a big deal compared to many other surgical procedures but it made us anxious nonetheless.

Does he need to wear ear plugs at swim class?
It's a matter of choice. Ear plugs will keep water out of the ears. On the flip side, it may push ear wax inwards and possibly cause ear wax impaction. Our conclusion: If he wasn't immersing his head underwater or doing anything in the swim class that would let a lot of water in his ear, then he should be fine without ear plugs.

No Thanks to Dumb Parent Treatment
For the 4 visits, the doctor proved to be a competent enough pediatric ENT although there were a few instances where my mommy instincts picked up a hint of the "dumb parent treatment". I shrugged it off. I shouldn't have. I should've acted on it immediately and said something back but at the time, I didn't know what to say. I needed more practice in speaking up. I needed to process thoughts faster. I needed to learn to advocate for my son better.

The most recent visit in February left me with many more questions than answers. These are questions I had asked this doctor but it seemed like they were quietly brushed aside. Plus, it didn't help to get a little lecture on the importance of restraining my baby during the ear exam. How do you single-handedly do that sitting in the chair with Matthew, who is extremely squirmy and strong?!? I didn't like how he assumed that I didn't know why I needed to hold on to him very tightly!! So Matthew's ear tubes are still in place. When is he going to check Matthew's tonsils? This is the fourth visit and he has not once checked Matthew's tonsils, which are a little large according to our very thorough pediatrician. What about his adenoid? What are the odds of Matthew needing tonsillectomy (surgical removal of tonsils) and/or adenoidectomy (surgical removal of adenoid)? Does he have sleep apnea? Why does he get so congested while he's asleep some nights when he has no cold and is not sick? Has he developed allergies? Are there other ENT's that might be more thorough and actually look at the throat too, not just the ears?

After asking a few friends and Matthew's pediatrician for recommendations, I scheduled an appointment with another highly recommended pediatric ENT in St. Louis. I'm told that this other doctor is thorough and has a better bedside manner. Hopefully, I'll get my other questions answered without the dumb parent treatment.