While I have been away for a few weeks preparing to take on a new title as “Work From Home Mom,” I also wanted to share something personal with all of you.
Previously, I mentioned that Frank was born with an autoimmune disease called Eosinophilic Esophagitis. This week just so happens to be Eosinophilic Awareness Week so I’m going to tell you our story.
When Frank was born, he was a healthy baby boy and he was growing and gaining weight beautifully as the weeks went on. There was just one problem. He was vomiting ALL THE TIME. He was eating. He was growing? Why is he vomiting? Something wasn’t right so off to the pediatrician we go.
That was the answer I received with every question I had. “It’s just acid reflux.” Frank was then placed on a proton pump inhibitor medication at 8 months old. While the medicine seemed to be helping with his stomach aches, the vomiting wasn’t stopping. Frank was exclusively breastfed until he was seven months and it didn’t dawn on me until much later that I could be the problem.
Allergies. I thought. What if what I’ve been eating was making him sick all along!?
I stopped eating dairy and eggs and everything else I could possibly think of but guess what? Frank is still sick.
By now, my husband and I had spent countless nights in the hospital with our baby boy. Finally, we were referred to a gastroenterologist at the local childrens’ hospital. NOW we are getting somewhere!
Let me just say, this was the beginning of a beautiful relationship and I don’t know where we would be or what Frank would be without this amazing doctor. She immediately knew what was wrong with our son. We treated him with medication and we kept him off certain foods until we were comfortable that he was old enough for an endoscopy. An EGD with biopsy is the only surefire way to diagnose EOE.
Frank was 16 months old when we finally decided we needed a scope. Not only did we officially receive an Eosinophilic Esophagitis diagnosis, we also discovered that inside that very little tummy was an ulcer about the size of a penny. No wonder he always seemed in pain! That ulcer was the largest doctors had ever seen inside a person that small so it was cause for more concerns.
More concerns? Awesome… not.
Frank was then put under anesthesia for a second time in a few short weeks for an MRI. As his parents, ofcourse Josh and I are fearing the worst. Especially after hearing the words “tumors and cancers” tossed out. For days I was a nervous wreck until the results came in. Hearing “it’s just a very big ulcer, no worries, we will give him some meds” sent a wave of emotions through me and I couldn’t stop the tears.
We had an official diagnosis, we could treat it. But how?
Here’s where the allergist comes in.
Pricks and patches and needles, oh my! EOE and allergies go hand in hand. If a certain food protein comes in contact with the esophagus, the white blood cells with attack it, like a virus. Symptoms include: vomiting, coughing, wheezing, fever, rash, diarrhea, along with a list of others. For EOE parents, it’s sometimes hard to tell if your child is having a flare or if it’s a virus! Like Frank, some treat with a combination of meds and food elimination. Others have so many triggers, that there is simple no other option but formula, sometimes administered through a G.I. feeding tube. It’s also, not always food. Frank was recently diagnosed with environmental induced EOE, where things in the environment such as pollen or dust will cause him to become very very sick. He wears a face mask to protect him when he’s outside.
Frank is almost 5 now and handles his disease like a champ but every day is a battle. His fight with his body is never ending. He’s soon to be going in for EGD #8… I think… maybe 9…I’ve lost count. I couldn’t be more proud of my little Food Fighter. We can only hope and wish for a cure.
If you have any questions please contact me or you can visit apfed.org