Thursday, March 17, 2011
Why are we going
So here is his life in a nutshell. All throughout his infancy he cried and screamed. He would wake up to nurse every 2 hours at night, never took naps during the day and always acted like he was hungry yet painful when he breastfed. So around 6 months we switched to formula and went through several different kinds trying to find one that worked. Around 9 months the doctor realized his growth was being affected and he wasn't growing like he was supposed to. At 11 months we switched to milk since we were having no luck with formula. At a little less than a year he started having diarrhea, and by diarrhea I mean 8-12 pure liquid diapers a day. His bottom was raw and burnt, and he was sleeping all the time. At his 12 month appointment he fell off the growth charts so we started doing tests.
In April, around 14months he was diagnosed with Eosiniphillic Esophagitis at Duke Childrens Hospital. He went on a 6 week course of swallowed steroids and started allergy testing and removing positive allergens. He was still doing poorly so we saw a Dr at Brenner Childrens Hospital and proceeded with more tests. In June he had another biopsy procedure done and it showed he was deficient in some specific enzymes needed in digestion of sugars. In July he spent a week in the hospital for not eating and came home with a NG feeding tube and told no foods til further allergy testing.
He had allergy testing done in August and it revealed more allergens. We did try to do several food trials which all ended badly so he was put on no foods period. In September he ended up getting a G tube for feedigs since this is going to be long term . After several months of still not gaining weight and not getting anywhere we decided to try to get into Cincinnati. They have a special program for kids with Eosiniphillic disorders. In December we started seeing an allergist at Duke which was very helpful. So in the past couple of months he had testing for gastric emptying and he was diagnosed with gastroparesis and a J tube was placed in February for feedings.
So here we are, he is 2 years old and not allowed to eat any foods. He gets fed through his J tube about 12 hours a day..should be more but right now that is all we can do. His list of allergic foods has grown a lot....peanut, milk, egg, soy, wheat, carrot, tree nuts, white potatoes, turkey, beef, strawberries, cottonseed, cucumber, casien, grape, venison, corn and chicken. Wow!
At least in the 2 weeks he has weighed in at the same weight!!! That is such good news for him. So this is why we are going, this is his chance for eating food one day. They are the specialists and even though he has several issues going on...EE, Sucrose-Isomaltase deficiency, Gastroparesis, and Tracheomalacia, hopefully this hospital can help him.
Posted by crystal voss