This is my first post and I am writing it at the only time I have ... 2 am in the morning. So please excuse any poor grammar, mispellings, etc.
I am a mother to three beautiful children, one who was diagnosed at just 18 months with a disease called Eosinophilic Esophagitis or EoE for short. It has been a long road for us! It all started when he was about 5 months old and he had an extreme allergic reaction to his very first food, avocado. Yes, you heard that right ... his very FIRST food! I was all excited to finally feed him his first food, even though he was my second born and we had done this before. I was going to do things different this time! I was going to try Baby Led Weaning to really encourage a healthy relationship with food at an early age. My perfect little dream of my child eating the healthy foods that we ate quickly came crashing down upon me as I looked at my 5 month old completely covered in hives after just a few bites of avocado. A doctor's visit and and an EpiPen later, I thought to myself, "Well, we have a food allergy. No problem - we got this". However, our story did not stop there. As we continued to try new foods, my sweet little boy continued to develop more food allergies. A few allergists later our amazing pediatrician had suspected a rare disease I had never heard of and referred us to a Dr Schroeder, a GI doctor at Phoenix Children's Hospital who specializes with eosinophilic esophagitis. In a short time we were scheduled for our first endoscopy, the one which would officially give us the diagnosis of EoE. As any parents of a child diagnosed with a rare disease, my husband and I dove into the literature soaking up whatever knowledge was out there about this strange disease. Unfortunately, we continued to struggle with feeding Brayden and he wasn't getting any better. At the time I was nursing him on his extremely restricted diet, which meant that I was on that diet. At around 22 months I was not able to keep up with the diet and Brayden's weight had continued to decline. It was time for a G-tube! Well, I take that back. Our GI had recommended a G-tube, but I was scared to death of this idea. A tube that would go directly into my son's stomach. No way! He wasn't that sick! But he needed some help, so I agreed to a nasogastric tube or NG tube. 3 months of holding him down while my husband and I forced a tube through his nose and throat and down into his stomach was all I could handle. Enough was enough and I was ready to make the plunge to the g-tube. My biggest regret in all of this is that I didn't agree to the g-tube earlier! This was a life changer for us! We could now feed our child the elemental formula that he so desperately needed to heal and grow.
So many trials and tribulations with allergies, food trials, eczema, extreme outdoor allergies, an immunocompromised system that catches every virus known to man, and many bouts of vomiting later ... that brings me to today.
So I titled this "behind closed doors", because to most people that don't enter our house my son with EoE looks like a normal 3 year old boy. He doesn't look sick. He is like any other jovial 3 year old with his typical displays of independence in public. Except behind closed doors. Because when he is sick, we tend to keep him home. Today was a perfect example of that. He had a party at his preschool, which he is not able to attend regularly because he has had an awful spring with viruses, extreme environmental allergies, asthma, etc. Unfortunately, he was a bit nauseous and had that look that only an EoE mom can recognize ... he is about to vomit all over the place. I took him home and watched him play and then go through bouts of nausea, while he fought his body so he didn't have to poop. We are not sure why, but pooping has been extremely painful for him and he is scared to death to poop lately. He becomes nauseous, he has horrible abdominal cramping, bloating. As the evening continued, he cried, screamed in pain, got angry, and looked at me with fear in his eyes as he struggled to do something that is so simple for the rest of us. I watched my 3 year old son lay his head down on the couch as he watched his older brother playing with his dad, while he was feeling too sick to even care. It is times like these that I feel helpless. I wonder, am I doing enough to advocate for him? Why is he feeling this way? Why can't he just be a kid? Why does he have to be in so much pain that he feels like he is going to vomit? Maybe this is all my fault! I gave him that rice krispy treat that he so badly wanted and he has been in pain every since. So we went on with our night, and as he finished up his evening feed, his nausea subsided and he again became the little 3 year old boy that those outside of our house recognize and love. He turned back into that 3 year old little boy who loves to tackle his dad, tear down any Lego tower his brother builds, jump from chair to chair like a frog, and kiss his 8 month old sister all over the face. This is the boy that most people see. But behind closed doors it is a very different story...
