As much as I wanted to, I could not post for some time. I have been dealing with a little boy who has been quite ill for some time. The last time I posted it was just before school began, so I knew it would be a while before I would have time to sit down to blog about life. Little did I know that it would be more than six months due to my son's illness.
Ben- I used to try to save his identity before and called him BJ, but now it is important that you know his name- is only three. Before he had reached that advanced age, he began to show symptoms of a digestive issue. He had acid reflux as a baby and something called spastic colon, but he seemed to out grow all of that. But around Columbus Day in 2012 Ben got sick, really sick- explosive diarrhea and projectile vomiting. We thought it was the flu, but it just didn't go away. He lost weight, refused to eat or, when he did, he threw it up. I put him on Pediasure as his primary food and then tried to reintroduce solids. It was one step forward, two steps backwards. I went to his doctor and we did an ultrasound to see if there was a growth. We did blood work to make sure he did not have diabetes or thyroid issues. Ben got worse. When he began to bang his head on the floor out of shear frustration, I lost it with the doctor's office and demanded a more hands-on approach; I got the name of an allergist who had just opened up a local office after branching off from an allergy group she had worked with so she could focus on children, and an emergency appointment with a pediatric gastroenterologist at Hershey Children's Hospital.
Dr. Fisher was the allergist who gave me the first news: Ben would need to have chocolate and tomatoes removed from his diet. I found out that two of his favorite foods was off limits; I needed to find alternatives. Dr. Alexander ordered tests for his bowels to make sure it was not some kind of bacterial issue. Let's just say those tests were not as easy as collect fresh samples. My husband and I had to collect poop in all its forms to be delivered to the lab in liquid form, in frozen form, within an hour, within a day, within 3 hours,... Dr. Alexander ordered an upper GI that confirmed that Ben still had acid reflux so Ben was placed on Zantac. Dr. Fisher put Ben on Zyrtec for whatever the other allergy was until Dr. Alexander could perform an endoscopy. The problem with being such a specialist is that Dr. Alexander's schedule was booked months ahead of time. We had to wait four months before Ben could have his endoscopy.
April 3rd is already a day that I remember quite well- it is the day that Ben crawled up onto a stool, leaned across the kitchen counter and pulled an entire pot of coffee onto himself and his sister, causing third degree burns. April 3rd did not need any more importance in my family's life, but now it is the day that I found out that Ben had Eosinophilic Esophagitis (EoE). I am still trying to figure out what this will mean. At its worse, Ben may never eat food again; at its best, he will not have certain foods and he will thrive once those foods are removed. Right now Ben has the first round of special patch tests on to see if any of those foods are the problem. Now we wait. Again.
