Just Breathe..

I started taking Landon to the Children's Institute a few weeks ago following an evaluation.. I think I posted about this evaluation. The Speech Therapist who evaluation and is now treating him suspected that he has a disorder called Esophageal Dysphagia. I've done some reading on the subject but can't exactly understand, from the reading, how Landon may be affected. The way to diagnose it is to do a Barium Swallow Study. We attempted to have this test done several months ago, without success... They needed Landon to sit in what looked to be an infant seat and wanted him to eat. There was just no way... He freaked, absolutely freaked, as soon as we walked in the Xray room and Jimmy put on the protective vest. I had to leave the room because I am pregnant. Anyway, Jimmy and I weren't very concerned because we didn't believe that there were any issues, but thought that his pocketing of food and spitting it out was a result of being tube fed. Fast forward a couple of months, and we are told that they do need him to have this test done to diagnose Esophageal Dysphagia (ED). I expressed concern and they assured me that we would slowly work to get him more comfortable so that he can do the test. In addition to this test, there is another way that this can be diagnosed which is by using a machine the measure his breathing patterns while he eats. As you can imagine, I had doubts, major doubts, about getting either of these tests done. I actually became upset and frustrated after a few weeks of going... I felt like we were going to spend weeks and weeks trying to get tests done that would ultimately never happen.. Well, this week Landon surprised me. The breathing test required him to sit in a high chair (which is a fight in itself) and place a tube that looks like the tube used for oxygen in his nose as he takes bites of food and drinks. The tube is connected to a computer and the breaths you take are recorded on the screen with a red, green or black line that either goes straight or moves up and down indicating inhales and exhales. The straight lines means that it's not in the nose correctly. Last week we had put stickers on the tube to decorate and he watched as I put it in my nose and "drew pictures" with my nose that he saw on the computer screen. He put it in his nose VERY briefly but did seem interested. Well, this week when Mary Beth (his therapist) placed the tube on the high chair and he seemed excited to pull it out of the package. I asked him if I should take a turn first or if it was his turn. He wanted a turn first. So, Mary Beth place it in his nose and behind his head to keep it in place. Rather than remove it immediately, which is what I expected, he proudly took bites and took drinks as directed so that he could see the line move on the screen. I was AMAZED! And guess what- he actually cooperated long enough to get some answers. Apparently this test can diagnose ED and now we don't have to worry about the Barium Swallow Test. The test confirmed: he does have ED. Now in reading about ED online, I'm struggling to make sense of how this diagnosis fits with Landon so I will explain it the way I understand it... Take this with a grain of salt, at least for now until I have a better understanding. It is believed that abnormal breathing patterns is what is causing Landon to pocket and spit out food. Rather than take a deep breath and hold it as he swallows something, he releases his air prior to swallowing causing discomfort in swallowing. So, if you were to take a drink- let all of your air out and take a drink. It's strange and uncomfortable. She also said that he demonstrates pretty shallow breathing anyway. Landon prefers food that are saucy- noodles with dressing or sauce and lettuce with Ranch dressing are his favorites. He doesn't usually pocket these foods (when I say pocket, I mean that he holds it in the side of his mouth). Supposedly, this is because it slides down easily so it's not quite so uncomfortable. The treatment involves breathing exercises and exercises to strengthen the respiratory muscles. So, it got me thinking... Because of his phosphorus deficiency, Landon's muscles were weak. They became stronger after medication and getting his electrolytes within a normal range along with physical therapy. I wonder if muscles in other areas were affected in a similar way? It's hard for me to imagine that this issue is unrelated to Cystinosis. Particularly since I was told by Mary Beth that Landon is the youngest person that they (researchers in our area who are studying this)have diagnosed. Apparently a study was just done with adults who have this problem and they are now exploring it in children after the adults reported that they have experienced the symptoms of this disorder for as long as they can remember. It is very common to hear, from those in the Cystinosis community, that children with Cystinosis are not great eaters- tube fed or not tube fed. There are a lot of theories why this is the case. But, could another be that some with Cystinosis have this breathing problem which prevents them from swallowing? Landon has been ravenous lately.. He asks to eat ALL.THE.TIME. Now, sometimes it seems to be in attempt to avoid going to sleep. Oh yes, he is becoming a bit manipulative. But he really wants to eat and really seems to enjoy lots of different kinds of food. IF we can conquer this barrier of not swallowing everything he puts in his mouth, our future with the feeding tube and milk may not last quite as long as we once thought. I'm not jumping ahead of myself, but it's kind of nice to think about...