EOE Update: Fall 2016

At the end of September, my 3-year-old son had his fourth upper GI endoscopy. His eosinophil counts had gone from 80 to 65 after three months on the top 8 elimination diet. Even though his counts had improved, it wasn’t enough. So we began swallowed steroids at the end of May 2016 and this scope would help determine their effectiveness. If his counts drastically lowered, the swallowed steroids were doing their job. If they did not lower, we were headed down the path of a feeding tube.

Endoscopy No. 4 Results

We met with my son’s GI doctor just minutes after the procedure, and he was impressed by the look of Beau’s esophagus. So we were hopeful for a decreased eosinophil count once the biopsy results came back a week later. The results indicated a new count of 27 eosinophils, which was great news and meant that we have avoided a feeding tube.

But despite the much lower number, the mom in me is still not satisfied and is having a hard time taking a deep breath and rejoicing. You see, getting down to 27 eosinophils has been a long journey over the past four months. Not only was Beau placed on swallowed steroids twice a day, but he takes Singular every night and inhaled steroids for asthma management twice a day. He’s been on a super strict diet called Autoimmune Protocol (AIP), which is a stricter version of the Paleo diet, but also eliminates eggs, nuts, seeds and nightshades–along with the fish and shellfish we had already eliminated from the Top 8 Elimination diet. So to say it’s been a bit hard these past four months is an understatement. We have managed and adapted as best we can, and thankfully Beau doesn’t complain about the food he is given (bless his heart).

Beau was hospitalized for five days at the beginning of August, the same week he was set to have his fourth endoscopy. We rescheduled the endoscopy for 7 weeks later to give all the extra steroids a chance to get out of his system so as not to skew the esophageal biopsies. At the same time, the one thing getting me through the strict AIP diet was the fact that his endoscopy was the first week of August. Because the endoscopy was delayed and he had lost so much weight in the hospital, we decided to add gluten-free oats into his diet to get him more calories, to give me more food options for him and to help him feel satiated. So Beau’s biopsies at the end of September reflect his eosinophil count on inhaled steroids, swallowed steroids, Singulair and AIP diet plus oats.

A count of 15 eosinophils is considered the threshold for EOE, and while we are getting closer to that number, what concerns me is just how much it will it take for us to get there. He’s already on a ton of steroids and a super strict diet. What more can we do besides give him more medicine or higher doses? We have a followup appointment with our GI doctor the first week of November, so we’ll know more about his suggestions then.

EOE Medications

In the meantime, we have begun taking Beau’s health back into our own hands and going with our gut. No we are not doctors, but more than anyone we put our little guy’s best interests first. While we aren’t against the use of modern medicine, we do believe there is a fine line of balance between modern medicine and homeopathic treatments. And while we are grateful that the steroids are working to fight Beau’s EOE, they also scare us to death because until there is a cure, Beau’s  prescribed treatment plan includes daily steroids indefinitely. Also, because EOE is a relatively new disease and the treatment of swallowed steroids has only been researched so long, no one truly knows the long-term effects of this treatment.

Beau had a followup with his pediatrician a couple weeks after his August hospitalization, and we learned during that visit that his growth rate has fallen from 80-85% in height and weight to the low 30s for both during the time that he has been on inhaled and/or swallowed steroids. I posed the question to an EOE board on AFPED.org to see if any other children have seen a drastic decline in growth rates after being on steroids, and several parents piped in with similar accounts of their children after being placed on steroids for EOE. No, we’re not doctors or research analysts and we can’t prove that his time on steroids has affected a drastic decrease in his growth rate. (His strict diet may play into the decline as well, despite the fact that he still eats like a horse.) But we are his parents and it’s our job to raise red flags each and every time we see one.

I posed my concerns about steroids and Beau’s growth rate to his GI doctor, who said because the steroids are swallowed and not systemic, they shouldn’t affect his growth. He said that the inhaled steroids prescribed by Beau’s pulmonologist would have a greater effect on growth than swallowed steroids. So I asked Beau’s pulmonologist about the effect of inhaled steroids on Beau’s growth rate, and he told me that it shouldn’t affect his growth because it’s such a low dose and that swallowed steroids would affect growth rate more than inhaled. So in essence, his doctors pointed the finger at each other’s treatment. I like both of these doctors, I really do. They have both answered all of my questions and been very upfront with me. They have each let me try the lowest dose of medicine possible to get Beau well. They have also laid out concerns when I tell them our desire for more homeopathic long-term treatment. As a parent, it’s hard to sift through all the knowledge and recommendations of experts to find the best course of treatment for my son. With very limited medical knowledge, it’s hard to figure out if the treatment of one issue is causing other issues.

Besides his declining growth rate, we are also concerned about the other side effects of a prolonged use of steroids, including a decrease in bone mineral density. Beau is taking a calcium supplement (along with several other vitamins and supplements) because he is restricted from eating dairy and we are aware of the risk of osteopenia. He is set to see a dentist this month after we noticed that his back molars are brown and basically seem to be rotting. Our GI doctor told us this is not because of the steroids (though our pediatrician suspected it was caused by the steroids) but could be from the honey that we mix the steroids with to create the slurry for him to swallow. I’m very skeptical of that explanation, but we will see what the dentist says soon.

Changes in Care, Dosages and Diet

As the prevalence of EOE continues to rise, full-service EOE clinics are popping up at well-known healthcare centers across the country. I heard great things about the Eosinophilic Disorders Clinic at Cincinnati Children’s from other parents on AFPED.org. Many parents praised the clinic for helping to get their kids off medicine by narrowing down and eliminating their trigger foods. This is exactly the approach that we want to take. Also, the doctors at the clinic work together as a team to treat patients. We submitted an application and I have requested all of Beau’s medical records from all five of his doctors (pediatrician, GI, Allergist/Immunologist, Pulmonologist, ENT), including all surgeries, tests and pathology reports. After speaking with the clinic last week, we can expect an appointment in January or February 2017.

Besides transfer of care on the horizon, we have also made a few other changes since Beau’s recent endoscopy. We have cut his dosage of swallowed steroids down to once a day. We will talk with his GI doctor about this at his appointment in a few weeks, but his growth rate decrease was a huge influencer. Also, Beau skipped three doses of swallowed steroids about a month ago when we were out of town while we were waiting on the local pharmacy to order his meds. Even though this is anecdotal, my husband and I both noticed that it was the flattest his stomach had ever looked. We have worried about bloating and stomach pains while he is on steroids–he complains his tummy hurts a lot. And even though swallowed steroids are supposed to be absorbed into the esophagus and never make it to his stomach, I’m not sure I’m buying that explanation.

As for the inhaled steroids, we feel that they have less negative and more positive effects on him. We have lowered his dose of Flovent from 110 mcg to 44 mcg recently, and we’re hoping that helps to keep his asthma and wheezing at bay this winter when sickness abounds. He is still on Singular for now, and we will talk with his doctor about whether that’s something he can take seasonally as needed.

For better or worse, we have relaxed a little on the diet front. We are letting him have tomatoes (which are restricted on AIP diet) a couple times a week now. I can’t even tell you how exited he was the other day to see a few little tomatoes sliced up on his plate for lunch. He gobbled them up first and asked for more. He has also eaten plain rice, quinoa, sunflower seed butter and hemp seeds a handful of times. I don’t want to open his diet up too much, but even adding back these few items have helped to balance out his meals and add more fats, carbs and flavor.

What Next?

Even though Beau’s asthma and breathing problems may seem unrelated to his EOE, I personally think they are interwoven, though it’s hard to tell the extent. Many people with EOE also have asthma, rhinitis and eczema like Beau. They are all allergic diseases that manifest themselves in different ways. For Beau, it’s upper respiratory issues and infections.

Day to day, Beau has done great since his hospitalization in August. He was off of his inhaled steroids for the summer, and started them back after he was released from the hospital. He has had a couple colds since then, but got over them quickly, probably due to the Flovent. I am praying we can get his asthma under control for the winter.

In a nutshell, we are at an impasse right now. We are grateful that his counts lowered from the swallowed steroids but also realize it wasn’t enough to put him into remission (below a count of 15). We don’t want to pump even more medicine into his little body at this point, especially given the issues with stomach pains and a decrease in his growth rate. But of course, we don’t want to do further damage to his esophagus by not treating his EOE. We are just at a hard place right now and praying that a weeklong visit to Cincinnati next year will help to provide a treatment plan that we can truly get behind and embrace.

Read more about Beau’s EOE journey.