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Imagine Christmas With No Truly Safe Food

“Mama, I think the new medicine is working. The pokeys in my esophagus and stomach are gone!” These are some of the most exciting words my 9-year-old son Davis has ever said to me. I had to swallow the lump in my own throat and fight back tears as I asked him if he was sure. He gave me a grin and told me he was very sure. Just as a million questions came flooding into my brain to ask him, he scampered off to pick back up the Playstation controller and continue playing his video game. He didn’t realize that was some of the best news I have ever heard in my entire life. I was stunned, and it took me a few minutes to process what he said before I went to discuss this revelation to my husband.

Davis has eosinophilic esophagitis (EoE), multiple anaphylactic food allergies, Ehlers-Danlos syndrome (EDS), dysautonomia, plus more diagnoses. His diagnoses seem to interplay in ways that even the doctors do not fully understand yet. We recently learned there is a subset of patients with both EoE and also connective tissue disorders (EDS is one of those) and the subset is labeled EoE-CTD.

We sometimes refer to Davis as “the needle in the haystack kid” because he is in a group of EoE patients who do not have any safe foods even after years of food trials and endoscopies. He doesn’t talk about it much, but if asked about his allergies, he will just tell you he is pretty much allergic to all foods. Then he usually shows his G-tube and talks about the special formula he gets through that (Neocate Jr.) Then he likes to say something about being lucky that yucky medicine can go in the tube and he doesn’t have to taste it.

 

little boy looking at chicken

Right now, the only real food Davis can eat is chicken, but it actually is causing problems inside him according to the last endoscopy he had. The only reason he is able to keep eating it is that he is trying a medication. He can also eat plain cane sugar, salt, ice/water, and certain flavors of one brand of cotton candy. Some other kids with EoE can have other artificially flavored things referred to in the EoE community as “freebies,” but Davis can’t because he has had allergic reactions to them.

Davis was diagnosed with reflux and also eczema in his first few weeks of life. He was diagnosed with his first known food allergy at 6 months. He received the diagnosis of EoE at 14 months old, and he was 3 when the geneticist told us he had EDS. All four of us in our family have health conditions, but he is the only one dealing with EoE and food allergies. He is a very matter-of-fact boy and has generally taken everything life has thrown at him in stride.

little boy with g tube

A layman’s explanation of EoE is that his body recognizes food as an enemy rather than as nourishment. The body then sends white blood cells called eosinophils to fight the enemy food in his esophagus where these cells wreak havoc and cause pain and more problems. Most EoE patients only have so many foods that the eosinophils are triggered by, and they can usually still eat the majority of foods. There is one type of medicine for it, swallowing steroids that are usually meant to be inhaled to regulate asthma.

Davis tried the medicine a couple of different times years ago and it didn’t work for him and also caused bad side effects. He has passed a couple of food trials, verified by endoscopy, only to have a later endoscopy on the same food turn up bad. He has had a frustrating time of it.

After the most recent endoscopy for chicken turned up bad, meaning the food is causing eosinophils to congregate in his esophagus causing problems, his gastroenterologist asked us what our thoughts were on revisiting the swallowed steroid medication that Davis had tried with no success before. As it had been years ago, we talked with Davis and decided we were willing for him to give it a try again. It was a tricky decision for Davis as he has the memory of an elephant and remembers the medicine tasting bad and he remembers the side effects. He gallantly did decide it was worth trying again if it meant he could continue to eat chicken while he was trialing the new medicine.

The trial got off to a rocky start as it took us a bit to get the ratio of medicine to the thickening agent we used correct so he couldn’t taste the medicine. It is not as simple as one might think – Davis has oral aversions and if something tastes bad to him, it triggers his gag reflex and you can imagine what happens after that. Thankfully we got it right after a bit and then it was smooth sailing. He’s been taking the new medicine for weeks now.

family photo

As it stands, Davis will have some chicken and sugar cubes or cotton candy for his Christmas meal, plus elemental formula going into his feeding tube. The chicken is not a safe food for him, but the new medicine may help his body tolerate it and possibly even more foods. We don’t know yet. He does have anaphylactic allergies as well, so at mealtimes we have to make sure we are celebrating with family and friends who understand to be careful about spilling and washing food residue off their hands and such as that. We are fortunate that everyone at our Christmas get-together understands and does their best to help us keep Davis safe.

little boy in shopping cart of cotton candy

Every party or holiday at least a few times I stifle the urge to cry. I am sad my son has no truly safe food, and it is hard to see other kids so excited about yummy holiday food and desserts and he just kind of watches them eat sometimes. He is genuinely interested in their food. I also cry because he meets every challenge head on and usually with a smile on his face. He does get sad sometimes, especially if we go somewhere where we don’t expect there to be food but then there it is. We do homeschool and his health had a lot to do with that decision. Of course I can’t control every environment, and life is full of surprises. I am just so proud that he is learning to speak up about his own health and happiness and to start advocating for himself.

I was still not expecting the happy announcement he made about “the pokeys” being gone. That is how he has always described the feeling of his EoE flaring. I pray it will correlate with good scope results in a January and that he might begin to build a diet of foods with the help of the medicine. My husband and I lie awake at night and talk about being able to cook and serve Davis a whole plate of different foods. That would be a prayer answered and a dream come true for us.

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Thinkstock photo by shironosov