A Life With Eosinophilic Esophagitis -- Andrew's Story

Andrew is a gifted, sweet, all boy 8 year old. The day he was born was another one of the most precious days of our lives. Besides the fact that he was huge, 10 lbs. 9oz. he was perfect. Madison fell in love with her "Ohjew" immediately.


Andrew was an extremely fussy baby. That may actually be an understatement. He cried most of time and spit up constantly. Madison had never spit up, so I didn't realize that this might not be normal. Finally when he was about 4 months a friend told me she thought he may have reflux. So I spoke to the pediatrician a couple of months later and she sent us to a pediatric Gastrointerologist (GI). He agreed that Andrew may have reflux, said babies usually outgrow it by 9 months and put Andrew on some meds. By 9 months he still had not outgrown the spitting up and was still quite a fussy baby. We went back to the the GI, who encouraged us to continue the medication, but now informed us that most babies outgrow reflux by age 12 months.


By 12 months Andrew would still spit up and could still be fussy. I would (and still do at times) call him lovingly, my temper tantrum baby. After he turned a year, we stopped giving him medication. The spitting up eventually began to subside around 18 months. However, during this time he would have chronic sinus infections and seemed to stay sick most of the time. He was (and is) prone to getting croup as well. I remember many nights sitting in the bathroom with the hot water running to produce steam, then either taking him outside in the freezing night air, or putting his head in the freezer if the temperature outside was not cold enough.


At one point the ENT told us to take him off all milk products to see if a milk allergy was causing his sinus issues. We did this for a month with no results. He spent a good portion of his first 4 years on anti-biotics.


Little did we know then that all of these things were linked to a diagnosis we were about to receive. When Andrew was 3 he began to complain about his tummy hurting and would regurgitate often. Our pediatrician referred us to a new GI who recommended that Andrew have an endoscopy with biopsies. When the results came back it was confirmed that Andrew had Eosinophilic Esophagitis (EE). What in the world is that!? The GI that we were seeing at the time informed us that it is an allergic esophagus and that it is treated with steroids. He said that Andrew needed to go on systemic steroids for a month and then he should be better. Okay, we can handle that...Well, the whole time he was on steroids Andrew was still symptomatic. The doctor then said that sometimes children need an addition 2 weeks of treatment. We did that too. Andrew still had symptoms.


We continued with this doctor on this course for about 3 years. He also put Andrew on inhaled steroids that Andrew would swallow. Now I should tell you that steroids can be an effective treatment for a portion of children with EE. However, as soon as a child goes off the steroids the EE comes back. There is no cure for EE.


When Andrew was 6 his symptoms began to get worse. His stomach was hurting constantly, his chest hurt, his throat hurt, he was regurgitating 30-40 times a day and he began to throw up after eating. That is when I went to his pediatrician and said we have to do something else. She referred us to a new pediatric GI who did his own tests to confirm EE. After confirming the diagnosis, he explained that EE is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils. Eosinophils are white blood cells that cause inflammation, especially caused by allergic reactions. With EE it is common to not know what the allergen is that is causing the reaction. He immediately called for Andrew to have allergy testing. Many EE children do not test positive to blood or prick testing, as was the case with Andrew. So we then had to have Andrew patch allergy tested. At that time he tested positive to wheat, milk, tree nuts, chicken, and shellfish. Even though I felt completely overwhelmed at having to change my cooking so much, we started an elimination diet for 3 months to see if his esophagus would heal and eosinophil levels would decrease. No luck. His numbers actually went up.


That's when my husband and I decided to take Andrew to an Allergist in Greenwood, SC that some of the moms I had met with children of EE had recommended. He specializes in asthma and has a special interest in EE. He ran a complete battery of allergy tests on Andrew including the usual, plus fresh food testing and patch testing. After the results of those tests came back, Andrew was then taken off 13 foods: eggs, wheat, soy, milk, tree nuts/peanuts, fish/shellfish, chicken, strawberry, rye, barley and oats. Talk about changing your eating habits! He continued this elimination diet for 3 months and then was rescoped and biopsied. Again, his numbers went up and his esophagus looked horrible. Now we had a decision to make.


The most effective way to put these children into remission is to put them on an elemental diet. This is a doctor prescribed fully nutritional hypo allergenic all liquid diet. We discussed this option with Andrew and after much consideration, we decided to go this route.


So on January 2, Andrew began his all liquid diet. He is AMAZING. It tastes as bad as it smells, but he keeps chugging along. The first week was really difficult, but then he realized that he is beginning to feel better. No more belly aches, no more regurgitation. He's smart enough to know it's the diet that is making him feel better and he wants to get well. Doesn't mean we don't have some rough days...9 juice boxes of a liquid you don't care for is a lot to get down in one day. But he is awesome. And as well as feeling better, he looks better. He has gained 2 pounds, has lost the black circles and sunken eyes that he has always had and his cheeks are beginning to fill out. Now we are just waiting until March 3 to see what his scope looks like, and a few days after that to get his biopsy results. Go Andrew!!