I started this blog so that I could keep all of out friends and family up to date with what is going on with Tanner and his journey with Eosinophilic Esophagitits (EE).
Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.
Now that you have some idea of what we are dealing with I will tell you our story. Tanner was breast feed until he was 9 months old. When he was 3 months old he started having reflux issues. I took him to the Pediatrician who cut dairy out of my diet. This seemed to help for a few weeks and then the reflux returned. Tanner was then put on zantac that seemed to be working.
When Tanner was 9 months old he started to refuse to nurse so we put him on formula. He immediately started to get sick. He was vomiting at least 5 times a day. The pediatrician thought maybe he was lactose intolerant so we went to soy formula. Wrong move!!! 20 min after his first bottle on the soy formula he was vomiting that continued up to 10 times a day. Back to the pediatrician we went. I demanded that we see a Gastrointerologist. The pediatrician informed me that would be a waste of time. That I was a first time mom and it is normal for babies to “spit up.” I finally talked him into giving me the referral.
Tanner was 11 months old when we first went to the Gatrointerologist. At that point Tanner had lost 5 he was now a little over 10 pounds and was diagnosed as “failure to thrive.” The GI thought maybe he had milk protein intolerance. He was then put on Allimintum formula. Allimintum is supposed to be broke down so that it is more tolerable for babies with milk intolerance. This of course did not work. Tanner was still vomiting 5 times a day and had diarrea with mucus in it.
I started googling Tanners symptoms to try to get more answers. That is when I came across a website about Eosinophilic Gastrointestanal Disorders (EGID). These disorders can only be diagnosed by doing an endoscopy with biopsy. I took all the information I have gathered to the GI and said “Tanner has this I just know he does”. The Dr. told me there was no was that this way a very rare disease and that Tanner was not sick enough for that to be it. I insisted that he do the scope. I threatend that I would come sit in his office every day until he did it. He finally gave in and agreed to do the scope.
On July 20, 2007 (Tanner was 13 months) we went in for our first scope. On July 27, 2007 the GI calls me and say “Mrs. Wood first I want to apologize for not doing this scope sooner. Tanner has EE”
Our next step was to go to the allergist and have testing done. Tanner had to have blood drawn and skin prick test. We tested for environmental allergies and food allergies. We had 2 visits where we tested for a total of 65 foods. Over 50 were positive. Tanner lost most of his diet that day. He could only eat:
Chicken
Pork
Broccoli
Tanner is doing very well now and is thriving. He still has to drink Neocate and does so out of a bottle. He is gaining weight and actually seems to be adapting well to his diet. I have had to get very creative with the food he can have to keep things different and new for him. He is a very loving sweet kid and I thank God for him everyday.
Cauliflower
Grapes
Watermelon
Berries
Sweet potato
Rice
Neocate Jr (an elemental formula. The same stuff that you would get through a feeding tube)
We scoped again in May 22, 2008 and the scope was clean. Which means he had little to no eosinophils in his esophagus. We could now review his allergy test and decide on 3 foods that he tested least allergic to and do a food trial. A food trial is when we try one new food every 2 weeks and then after 6 months we do another endoscopy to see how he is reacting to those foods. We chose Sunflower seeds, corn and potato.
Tanner seemed to be doing fine on all 3 of the new foods. No signs of being allergic. This was great Tanner could have chips and French fries for the first time in his life. He LOVED it!!! We then had a scope in January and the results were not so great. We now had to take potatoes and corn away from Tanner. This was devastating. We still cannot eat French fries in from of him with out a total meltdown. Luckily I have found some sweet potato chips he can have but they are still not that great.
