Our daughter Madison is almost 3 years old and was diagnosed at a year old with Eosinophilic Esophagitis (EoE) and GERD. It has been a long journey so far! When she was born, she did not have a desire to eat and I just knew there was something not right about it. The nurses and doctors kept telling me that once we got home, her feedings would pick up...they didnt. She was very colicky, would hardly ever sleep and was always screaming in pain. Once we started solids with her, it got much worse. She started breaking out into hives, vomiting, and showing signs of food allergies around 3 months. She could not swallow food and would constantly gag, choke, and vomit. I just knew this wasnt right. Her pediatrician suspected possible EoE but said she couldnt diagnose her and she would have to see GI and be scoped. I was terrified and I felt so helpless and alone. I just wanted my baby to feel better and for her to be OK. Long story short, she was put on Zantac at 3 months for GERD. We took her to her first allergist at 10 months and they found out she was allergic to milk protein. She was then put on a few different hypo-allergenic formulas but still couldnt tolerate them and so she was put on Neocate. At this time, she had to start intensive feeding and swallowing therapy 2 times a week. Shortly after, she was scoped for the first time and it was confirmed she did have EoE. We took her to a new allergist where she had more allergy tests done and found out she was allergic to even more foods. She went on an top 8 elimination diet and she seemed to be doing better. She graduated from feeding/swallowing therapy after 6 months. She started speech therapy after to help her feel comfortable using her mouth and was in that for about 6 months and then graduated! Her second scope was around her 2nd birthday and came back worse (her Eosinophil count was worse in her lower esophagus and they believe this is due to her reflux). We did more allergy testing and she was put on PPIs for her reflux and ended up reacting and being allergic to them all. She currently is allergic to dairy, eggs, wheat, soy, beef, pork, chicken, turkey, peanuts, almonds, rice, peas, corn, and has medication allergies. She survives off of Neocate Jr! She has such a hard time tolerating scopes and so her doctors are not scoping her again for a while because they dont feel the need (due to the fact she is allergic to all PPIs and has gained weight and is clinically improving). She is being put on Zyrtec to help with her environmental allergies and milk of magnesia to help with her BMs. Now, it is just a waiting game to see how she continues to do and when the next scope will be. We pray that one day soon, there is a cure! We are so proud of our brave, strong, smart, and beautiful daughter! Please like our page and spread awareness of this terrible disease!
Posted on: Thu, 13 Mar 2014 11:48:04 +0000
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