One thing that was mentioned during our long appointment in Cincinnati was the fact that swallowing difficulties and oral defensiveness is common in Chiari kiddos. G has had both since she was an infant. She was on baby food consistency until she was almost 18 months old due to gagging, choking and vomiting. Even today, at 7, she knows what she can eat and what will make her gag and choke. This prompted yet another referral for a FEES test. It is Fiber Optic scope that is inserted through the nose and records the vocal cords during swallowing. This allows a good view of how this part of the anatomy is working, and whether there is concern if a need for intubation arises. I.e., If surgery is needed, the anesthesiologist would know about anatomy anomalies.
This test takes a ton of personnel coordination. An ENT doc performs the test, while a radiologist and radiology tech runs the computer. Then there is a team of nurses who helps during the test. So, it took weeks to get it coordinated. We were in the office by the end of May to have the procedure. We brought a variety of foods we knew G has problems with. G's anxiety was under control (somewhat) and she was ready to get it over with. The ENT doc said that the scope would be in less than 1 minute if all goes well.
That was good news, but that's where the good news stopped. The scope began to be inserted, and the software locked up. Thus, preventing the doc to know how far she had inserted the scope. This caused some pain and major anxiety for G... and for mom and dad. They could not get the software to work, and thus resorted to a "Mirror Test". This test is not recorded but is a visual observance of the vocal cords using a bright light and a mirror by the ENT doc.
All turned out ok, and no anatomy anomalies were found. However, she was diagnosed with moderate to severe gastric reflux during this exam and thus is being now followed by an ENT and a Gastro specialist.
Seriously, can we see any more physicians in less than 6 months? Her Medical Care Team is getting pretty extensive.
-SCM
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