ENT Appointment 1/28/25

Stetsyn had an ENT (ear, nose and throat specialist) appointment last week on January 28th at Riliey. This appointment was scheduled to help rule out any possible causes of Stetsyn’s frequent gagging, spitting up and vomiting.

The appointment went well, we really liked our specialist and she was great with Stetsyn! We were prepared with a list of several questions to address, and most of them were actually discussed, addressed or answered when giving Stetsyn’s history and symptoms.

We noticed Stetsyn seemed to become dizzy or a little disoriented, almost like vertigo, when changing positions, fast transitions, or having a shirt with a tighter neck put over her head. If I were to sit next to her on the bed, pick her up from laying to holding her on my side, stand up and turn around to walk out of the room, she would almost always spit up, vomit or burp and seem like she might spit/throw up. This made us wonder if there could be something going on with her inner ear. Something her physical therapist also mentioned, Stetsyn often moves her jaw, pushing her jaw out like an underbite, which we always attributed to her Rett Syndrome as one of her “ticks.” The PT mentioned that she had another little girl one time that would do a very similar motion with her jaw, and she was playing with fluid in her ears, as the fluid would pop, move and make noise when she moved her jaw in this particular way. Going back to the “vertigo” symptoms, I have learned from the Rett Handbook that proprioception is often very skewed in individuals with Rett, which could add to the suspected “vertigo.”

The ENT said Stetsyn’s ears looked “perfect” and did not have any concerns with her ears. We asked about postnasal drip and mucus, and if there was anything we could be doing to help alleviate those symptoms when they occur, as they seem to be a major trigger for her gagging resulting in vomiting. The ENT advised we continue with Zyrtec and Benadryl as we have beeen doing; Zyrtec daily and switching to Benadryl when she has more phlegm, mucus, etc. She also advised we give Flonase (already prescribed by primary care doctor) daily, and that it can take approximately 4 weeks to see the full benefit of the Flonase spray. We also have a nebulizer with Budesonide, which was prescribed for as needed use when she had a barky cough a few months ago, but I was never sure if there were other instances which it might be beneficial. She advised this treatment should be used for respiratory symptoms, barky cough, etc.

We also asked if she had any advice on clearing large, hard boogers, as Stetsyn had some recently that obstructed most of her airway, but she HATES having her nose even touched, let alone big, dry boogers being picked out, LOL! The ENT told us saline spray or even better saline gel, which would stay in the nostril and work better to loosen the boog, making it easier for it to come out with or without help. As for the one we were unable to get out prior to the appointment, she went right in after it with super long tweezers. Yikes! She was braver than me! Granted, I was holding Stetsyn’s body and head, and Cody helped keep her hands out of the way.

As we were leaving the parking garage, Cody and I had our usual “well what did you think?” conversation. Cody said he felt like the appointment went good, that we didn’t really get any answers, but maybe that was a good thing. I agreed that “no news was good news” and no answers was the right answer. This appointment, and many others past and to come, are more about (hopefully) eliminating concerns or possible diagnoses in order to 1. rule out potential diagnoses and 2. help create a treatment plan around current symptoms with the information on what has/has not been diagnosed or has been confirmed not a diagnosis.

The ENT said that overall Stetsyn looked great and she had no concerns for anything at this time. She said that if we wanted to follow up in a year just to stay current that is all we need to do, and that she may possibly have changes with results of other tests and treatments coming up, such as after her sleep study in May, she may be able to help in some way based on those results.