Today we went to the ENT. I called on Monday for the referral because paperwork from Boston is finally making it this way. Our ped gave me the name of a doctor and I couldn't believe how fast they got us in!
As soon as the doctor walked in the room he said, "Alexander, I feel like I know you even though we've never met." Alex's pediatrician had sent over all of his files from all of his specialists - including Boston. This doctor had read it all and was wearing his thinking cap! I was one happy mama!
This is the deal. He feels very strongly that the swallow issue is a result of nerves in his upper esophagus not functioning properly and periodically spasming. He said that some of Alex's miscoordination may be a learned response to what randomly happens spontaneously. He is referring us to a speech pathologist that he refers all of his tough cases to. Even though we were told by the previous speech pathologist (the one who did his swallow study) that there was nothing we could do to condition the muscles that initiate his swallow, this doctor feels that his speech pathologist will see things differently. Unfortunately, not a lot is known about these nerves, so there aren't many options available.
Alex's laryngospasms have gotten much worse in the past 2 months (one of the reasons I think they got us in so quickly). For those who don't know, sometimes when Alex swallows, it ends up going down his windpipe instead of his esophagus. Instead of spontaneously choking like most people, his larynx locks shut to protect his lungs. In doing so, nothing gets through - including air. That's a laryngospasm. It primarily happens when he's drinking.
For Alex, they typically last 2-5 seconds, but have gone as long as 10 seconds. We have been really apprehensive about leaving him with anyone because it's such a tremendous responsibility to place on someone. We also didnt' know what to do if it didn't release on its own. Today we learned that it will. If it doesn't happen quickly, eventually the carbon dioxide in his lungs will build up, his body functions will slow down and it will be released. The worst that will happen is he will pass out, but then start breathing again. We were concerned that there was the potential for it to stay locked. I know that doesn't sound like the greatest news, but it was actually extremely comforting to us.
He said the larynx tissue is extremely sensitive, and he saw on the film how irritated Alex's is from all of the trauma. It is the reason for all of his coughing and voice cracking. He doesn't feel there is any anatomical anomaly in his windpipe and after reviewing the swallow study himself, feels that the report was very accurate. He was a little frustrated in reading all of Alex's reports that the previous specialists seemed very narrow in their thinking. He also said that I had been very consistent all along in what I said to everyone, and they just didn't give it attention because they didn't have an answer for it. Did I mention how much I like this doctor?!
There are continued concerns about his sleeping, but we're just going to continue to monitor it and if things get worse, we'll go back to the ENT.
I don't think I've been so happy leaving a doctor in a long time. No tests. No meds. Just an evaluation and hopefully some exercises to help Alex feel better and be happier. We really feel like a lot of loose ends are getting tied up and even though there's no cure-all for his ailments...it's SO much easier to move forward knowing what's going on rather than navigating the unknown.
