Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 dear angie. How well I remember the nights sitting up till 2 or 3 am reading every medical paper known to man, or that was published. (google scholar) cameron lost 84 lbs from dec to may at surgery. I looked for every avenue other than surgery that I could find. The more I read the more depressed I became. Knowing in my heart that this was SO serious and that I had to go right to the very best I could find.. for the sake of my child. At 15 a boys life centers around .. feats of strength, acting goofy, and eating. Cameron could do none. He was withering away, literally melting before me. I knew to save his life I would have to do the drastic and make a life choice for him. With the help of people on this board, the oldsters, the wise ones, we made it through the foam, through the learning to bring up the food, through the knowledge of how to push some food through with gravity and water. We made it to finding the best of the best and the right care, and to the person who could help my sweet boy. It became hard to be with friends, he just NEVER ate in front of them. Meals were an ordeal, eat a little, fill up the esophagus, go to the bathroom use water to push some through, bring up the rest. and repeat, probably 5-6 times a meal, and an easy hour of time. I would have such guilt as a mother to watch him, knowing I was swallowing just fine. Try typing swallowing in the messages, I know I posted the mechanics of swallowing a very long time ago. This will help you understand the complex process of the swallow. I want to encourage you, pray for you, and help however I can. There are other moms here. You have a specialist in chicago and in cincinnati. Just keep in mind ... this is a VERY rare disease. Only the best should treat it. Be selective, be discriminating. It is rare enough that any gastro would love to get his hands on some experience... but you want experienced hands... Bless you, the road is rough.. Carolyn mom of Cameron in Ca 4-H Leader extraordinaire! All-Star Advisor to the most awesome kids of Amador County! Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
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