Life Without Food

Imagine.

Imagine being told that you can no longer eat food or can only eat a few select foods.

Imagine a daily life that includes pain, nausea, diarrhea, acid reflux, fatigue, difficulty concentrating, difficulty swallowing, poor appetite. Imagine that it is all because your own body attacks itself because it views food as an enemy.

About a year after we finally got Bradley's eczema, asthma, and allergies under control, we knew that we were missing something. He stayed in trouble for "throwing up" his food because we thought he was chewing up foods he didn't like and then spitting them out. He also couldn't make it through a meal without having dire stomach pains and having to run to the bathroom. This went on for about a year before we really pushed to see if there was something else wrong.

At 4 years old Bradley started seeing a local GI doctor. We had to keep food diaries and he underwent his first endoscopy. It was with these biopsies that we found out Bradley has what is known as Eosinophilic Esophagitis (EoE). This diagnosis meant a new round of allergy testing to include almost 200 foods. My 31st birthday I had to hold my baby tightly as these tests were done. At this point we found out additional foods that he had to take out of his diet....beef, pork, banana, yeast, wheat, peanut, and corn along with milk and egg. He then did skin patch testing with the newly identified foods and he had little reaction. We proceeded to eliminate most of these foods, but did allow them once in a while.

Time passed and we neared the one year mark of his first colonoscopy. After his first scope we had been told he would have another one in a year. As we began to inquire and share that he was not improving, his first GI doctor insisted that he would not have another scope and that we just needed to keep a food diary.

Sharing all this with his allergist along with his continued symptoms, she put in for us to see a GI doctor at MUSC. Another great decision. Not only does Bradley's new GI doctor listen, she really understands this disease despite the fact that it is only a disease that was identified about 10-15 years ago. She did an endoscopy and colonoscopy. The eosinophils down his esophagus were worse and he was newly diagnosed with Eosinophilic Colitis. We adjusted his diet again.

Six months later he went through another scope and we found out that his counts were even higher. At that point the mention of a feeding tube was shared, but was not completely on the table yet. We were to get stricter with food elimination and also introduce an elemental formula because we couldn't afford for him to lose any weight.

Another 5 months passed and Bradley went through another round of scopes. Some counts were down, but not significantly. During those 5 months Bradley also started showing other signs. Pain of the legs, arms, chest, heart. Headaches. Fatigue. Periods of sadness and just wanting to be in bed and cry. Reflux returning. Eczema becoming harder to control.

After meeting with his allergist and sharing my concerns, she worked diligently to set up a time for us to meet with her and the GI doctor to discuss what our course of action would be. That meeting was held this morning, before patient hours. This meeting we shared our concerns and planned a course of action.

Today Bradley had 4 vials of blood drawn to check for eosinophils, IgE (Immunoglobulin E), vitamin D, and mast cell disease (specifically mastocytosis). Within the next few weeks he will go through a bone density scan (basically a specific type of x-ray) and will have surgery for a g-tube.

This next month will be a whirlwind of emotions and action. We will meet with the surgeon and surgery center. Uniquely of the 4 doctors who perform the surgery, one is the husband of Bradley's allergist. Shortly after that he will undergo surgery for a feeding tube port (button) and we will meet again with his nutritionist. We will find out exactly how much formula he will need daily so that we can determine a feeding schedule and we will also find out the couple of foods that he will be allowed to have. Most likely rice and not sure what else.

From there he will have scopes about every 3 months and will also have to follow up with the allergist about that often as well. Results of his biopsies will determine whether food will be added back and even then it will only be one food at a time.

Bradley was with us at the appointment, but realizing that he is about to have a "life without food" didn't hit him until we made it to the beach.

We've prepared mentally for awhile, but there is nothing like reality. A reality that will be rapidly changing for us.

Thankful to God that we have a great team of doctors. Prayful that we will continue to accept God's plan and to trust in that plan. Prayful that Bradley will hold on to life and continue to be the boy that so many would never guess suffers from all that he does. As some of the children in the videos below share, he will be able to do everything a normal boy does, the only thing he can't do is eat like them.

God's Got This! Years ago when Bradley would wake with screams because of the eczema, this song got me through many a night just so I could fall asleep myself....knowing that His hands are holding me.



Blessings by Laura Story reminds me that sometimes we have to go through the pain to get to the blessings. We must be patient and remember that our time is not God's not time.





 And knowing that God will be my Healer, my Comfort, my Peace, my Might Warrior, my Lifeline, my King so that I can be me.



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