In February 2016, an endoscopy confirmed what my husband and I suspected: Beau has Eosinophilic Esophagitis (EOE). His eosinophil count was 80 after that procedure, well over the diagnosis threshold of 15. Despite talks of swallowed steroids with the GI doctor and Allergist, I pushed them off and decided to try an Elimination Diet of the top 8 allergens (dairy, gluten, soy, eggs, peanuts, treenuts, fish, shellfish) because I have read that it clears 88% of kids with EOE.
So for the past three months, we have been very strict with Beau’s diet. We’ve sent him to church with special snacks, bought coconut products in an attempt to replace dairy, relied on sunflowerseed butter and tried my hand at egg-free baking. During this time, he continued his inhaled Flovent for asthma-like symptoms, and besides a short stint of pneumonia right after we sold our house and moved, he’s done quite well.
I was so hopeful that the Elimination Diet (though hard at times) was working for him. He had no gagging, choking or vomiting, and wheezing was limited only to the times he was sick.
So I took him to his endoscopy in mid-May hoping that his body had begun healing after all the work we had put into it. But directly after the procedure, when I met with the doctor to discuss what he saw, my heart sank. Though his esophagus has improved some since his previous endoscopy, it was clear from the images he took that it was not healed. A couple days later, his count came back and it was 65. Lower than his previous count of 80, but not low enough to be beneath the 15 count threshold.
So I think back to the past three months of a restrictive diet, and I wonder if it was worth it. Honestly, I think it was–and I still have hope that his EOE can be treated with diet instead of medication one day.
Ten days after his endoscopy, Beau had his first clear EOE flare up. It was clear to me because it wasn’t winter and he wasn’t sick with a cold. Nope–he woke up one morning and it hit him out of nowhere. There was vomiting and gagging and coughing and refusing to eat. There was wheezing and breathing treatments day and night for a while. At this point, we’re still not sure what triggered this flare up, considering EOE triggers typically happen days before the flare ups do. And we’re not even sure how long these flare ups last. Though he’s much better now, we’re on day 10 and he’s still having some symptoms.
We saw his GI doctor last week for a followup after the endoscopy to see where to go from there. I was prepared to acquiesce to his advice of giving Beau swallowed steroids. I was also hoping that we could now say goodbye to the Elimination diet since it didn’t work very well for Beau.
But his doctor, whom I really like and has been great about working with Beau, said to keep him on the Elimination diet while starting swallowed steroids. We talked about Beau’s recent flare up and he said we can’t add anything back into his diet at this point because we need to get his counts down. He was quite amazed at Beau’s demeanor and appearance–my active, mostly happy boy who is 80% for weight and height. He said most kids with Beau’s level of EOE have failure to thrive and you can see from their faces that they don’t feel well. And that’s when I was reminded once again of how amazing my little Beau is, how he takes the pain and inflammation in stride because it’s really all he’s known.
During this visit, what I wasn’t prepared for was talk of a feeding tube. I thought we weren’t even close to Beau requiring one. He eats–actually he loves to eat–despite the pain. I’m sure the steroids play into his increased appetite, too. His doctor just told me that a feeding tube is the next step if the swallowed steroids don’t bring down his counts and his inflammation. And even though the doctor is hopeful they will work, he is worried about the aggressiveness of Beau’s EOE, so he wanted to prepare me for this possibility. He will have another endoscopy in August to check his counts again and his inflammation.
Like any protective mother, I’m not convinced a feeding tube is the route that we should take. I gave my best at trying to control EOE by the Elimination diet and not medication. It didn’t work–not at this point anyways, but I’m not giving up hope for the future that Beau’s EOE cannot be managed by diet alone. Now, my goal now has changed to trying to manage EOE with diet and medication to get his counts down. Not only do I want to avoid a feeding tube, but I also want his esophagus healed and will then attempt cutting back on the medication over time.
New EOE Treatment Plan
But because the Elimination diet didn’t work well enough, my husband and I have chosen to restrict Beau’s diet even more–anything to avoid a feeding tube. He will be on the Paleo Autoimmune Protocol diet (AIP) for roughly 2.5 months before his next endoscopy, which should be enough time to see changes in his count if the diet doesn’t randomly include any unknown triggers.
The AIP diet is a paleo diet that takes restrictions a step further. Here’s a brief explanation, but in essence, besides Beau’s current restrictions (dairy, gluten, soy, eggs, peanuts, treenuts, fish, shellfish), we are now eliminating seeds, nightshades (including white potatoes, peppers and tomatoes), corn and refined sugars. We are cutting out all processed foods, even the ones that don’t have any restricted ingredients because most have additives, emulsifiers or thickeners. He will eat only real foods, and I will try my best to cook him some snacks to make things a bit easier. But because the AIP diet is very restrictive, we are also seeking outside help. It’s too much for me to prepare every family meal according to AIP standards, despite my experience with paleo cooking over the years. So we have ordered an AIP meal plan (individualized freezer meals) for the month of June that will give us options for Beau in the event that the dinner I’ve prepared is not AIP compliant. An old member of my husband’s CrossFit gym started his own paleo meal service company called Paleo On the Go several years ago. His company offers not only paleo meal plans but also AIP plans with high quality meats.
Beau stopped taking his inhaled Flovent two weeks before his last endoscopy. (Surely this did not contribute to his recent flare up, but who knows). He will start the Flovent again soon (after I check in with his Pulmonologist), and will continue to take a slurry of 0.5 mcg Budesonide twice a day, as well as Singulair at night and Albuterol as needed for wheezing. Just typing it out, my heart hurts because that’s a lot of steroids. We have two Epipens on hand for cashews, though we avoid all tree nuts at this point. And he’s also taking probiotics and I’m hoping the AIP diet will help to further the healing process. I still hold out hope that we can wean him off medications. Unfortunately, it’s so hard to pinpoint trigger foods for those with EOE. Allergy tests, especially skin prick tests, only cover so many foods and an outward reaction of the skin does not always correlate with an inward reaction in the esophagus, and vice versa.
So for now, I give myself a pep talk at least once a day so that I don’t get too discouraged or consumed by Beau’s EOE. As a mom, it’s a constant battle not to get too beaten down or overwhelmed by diagnoses and talks of treatment and chronic symptoms. After all, Beau’s a rough and tumble toddler who loves life. Oh yeah, and I also have two other kids and a husband to take care of as well as some RV trips to plan. Knowing we have a plan in place (AIP diet coupled with swallowed steroids) gives me peace of mind that I’m doing everything in my power to help him.