Over the next year, Brian visited the allergist many times. The doctor started with scratch tests (the marks covered his entire tiny back), and each time we added more to the “Brian is allergic to these foods list.” In an effort to be optimistic, and to offer us more food options, the doctor tried challenges, beginning with straight milk.
At first, any where the milk touched caused a hive, but within a few minutes, Brian’s face began to break out in hives on his eyes, ears and neck. A dose of steroids and Benadryl calmed the issue and we discussed administering a baked milk challenge.
Once again hopeful, I arrived at the appointment with “baked pancakes.” Things were going well during the first few bites. The nurse would give Brian a tiny bite and then check him fifteen minutes later to make sure he was breathing normal and that no hives had developed. We were on the last test when things took a turn. Shortly after the nurse left the room, I called her back because Brian was having trouble breathing. A parade of nurses and doctors filed in and out of the room to listen to “the worst wheezing” they had ever heard.
This time it took steroids, Benadryl and a breathing treatment before things calmed down. I only wish there had been a medicine available to help calm my nerves. Brian’s doctor came back in the room and told me it would be quite some time before we could administer another challenge, and hopefully Brian would grow out of this. He pointed out that while one goldfish may not hurt him, a handful might kill him.
Brian is lucky enough to have a wonderful woman visiting him each month, named Betsy. Although she is not a nutritionist, she helps me to find “safe foods” for Brian to eat. After two failed challenges, we watched very closely for any other reactions.
Brian’s list of allergies seemed to be growing. Without going into too much graphic detail, I can say the amount of “normal” poops Brian has had could be counted on one hand. In addition, sometimes he breaks out in hives or vomits in his sleep. I cannot go to bed at night without checking on him to make sure he is breathing normally, because too many times I have had to wake him in the middle of the night to stop the wheezing. Sometimes I would find him covered in vomit when he awoke in the morning, because he didn’t know any better except to go back to sleep. He never cried out. We keep epi-pens on hand and multiple doses of steroids. It was because of these things and many more that Betsy recommended Brian be tested for Eosinophilic Esophagitis (EoE).
I made another appointment with the allergist and asked him to scratch test every food left on the list. I told him I was tired of surprises and wanted to be one step ahead for once. I also asked him about testing for EoE. He instructed me to call our GI Specialist and performed another round of allergy testing.
After more appointments and discussions, an endoscopy and colonoscopy was scheduled for October 31, 2014. If you have never had to experience a procedure like this with a child, I pray you never do. Brian was not even two and had no idea what was happening.
The doctors and nurses let me stay with Brian till he fell asleep. Then I waited for the doctor to come out. He couldn’t give me a definite until biopsies returned, but he did see bleeding ulcers and wanted to start a medication immediately.
Unfortunately, one of the medications caused a reaction, turning Brian’s entire face red. This began a new list of medication allergies. After that episode, Brian refuses to take medication of any kind. Trying to force Benadryl or even tylenol into him is a painstaking battle.
Less than a week after the test, our GI Specialist called to confirm that Brian did have Eosinophilic Esophagitis. He recommended we meet with another doctor for more information. The other doctor did not trust the diagnosis and at the end of March, Brian went through another endoscopy and colonoscopy, which means two in less than five months. While we were relieved to learn that the ulcers were gone, we faced another positive diagnosis of EoE.
Today, Brian is diagnosed with Eosinophilic Esophagitis and has an allergy list of twenty-eight foods, although it continues to grow. From time to time, Brian screams in pain, or his body is covered in hives. He now suffers from eczema, which varies in intensity depending on the day. He continues to suffer from diarrhea, which has the ability to eat through his skin causing open sores. These are just a few of the day to day surprises on top of closely monitoring everything he eats and drinks.
But for now, Brian is a happy two and a half year old, who looks healthy to the naked eye. He loves his “Buzz cup” and knows to never put anything in his mouth unless mommy says it is safe.