The third week of May each year is National Eosinophil Awareness Week. It’s a week to educate others about eosinophil disorders as well as encourage those who live with it and their families. Eosinophil-associated disorders, a group of uncommon chronic illnesses, are rapidly emerging as a healthcare problem worldwide. Yet many patients suffering from these disorders go undiagnosed for years due to lack of information or awareness. Eosinophil-associated disorders occur when a high number of eosinophils, a type of white blood cell, accumulate in body tissues and cause inflammation and damage. Eosinophil counts are diagnosed and monitored through tissue biopsies. Eosinophil disorders are chronic diseases requiring long-term treatment. As of now, there is no known cure.
Beau’s condition called Eosinophilic Esophagitis causes inflammation and damage to the esophagus, which affects his ability to eat. There are also other eosinophilic disorders such as Eosinophilic Gastritis, Eosinophilic Gastroenteritis, Eosinophilic Colitis, Hypereosinophilic Syndrome and Churg Strauss Syndrome.
I’ve meant to post an update on our journey with Eosinophilic Esophagitis for a while now, but National Eosinophilic Awareness Week seemed like the perfect time.
I saw this quote on a similar image on a blog I follow, and it really sums up Beau’s EOE journey quite perfectly. To most any outsider, Beau is a happy, healthy-looking, constantly-moving three-year-old boy. He has energy for days and isn’t even close to being underweight. He attends preschool, playdates and all social events without missing a beat.
But Beau has food allergies–known and unknown–that heavily restrict his diet. He will never be able to eat what his peers eat. He will never be able to attend a birthday party and eat pizza or ice cream or cake. He will never be able to eat at most restaurants, because they don’t cater to such extreme food allergies. He will never be able to pick up a quick bite from a fast food chain with his friends after a ball game. He will never be able to partake at a business luncheon once he’s grown and in the working world.
If Beau eats certain foods that he is allergic to, he may gag, choke, vomit or develop a rash around his face. These are all clear indicators of food allergies. But sometimes, Beau’s only reaction occurs in his throat or esophagus, so from all outward appearances he seems ok, but later (often days later) we notice difficulty swallowing and other symptoms letting us know he is reacting to food.
When I think too much about Beau’s limitations, my heart gets heavy. And not because Beau hardly ever complains about not eating like the rest of the world, but because as his mother, I don’t want him to ever feel left out. I don’t want him to ever feel like his differences undermine his self-worth.
Eosinophils Disorders Clinic
We were hoping to get up to the Eosinophils Disorders Clinic at Cincinnati Children’s Hospital earlier this year, but we changed insurance plans and carriers at the beginning of 2017 and they do not cover any of the costs of such a visit, which would be quite substantial. So we are relying on the care of our team of Atlanta doctors for now, and feel more confident with waiting to see the clinic because Beau fared very well this winter and has had very few EOE flare ups (or at least ones that we recognize).
In March 2017, we visited Beau’s pulmonologist, who agreed that he could come off his Flovent (inhaled steroids) and Singulair. When he came off these meds last spring, it went well until he caught a virus in August 2016 and was hospitalized and on oxygen for 5 days. It was at this point he was finally diagnosed with asthma. After that incident, he went back on Flovent and Singulair, but our goal is still to wean him off all medication in due time. So this spring we tried again. Within a week of weaning, coughing fits, constant congestion, periodic wheezing and more persistent eczema popped up–and have yet to normalize. We have performed several rescue breathing treatments in the middle of the night, and thankfully he’s managed to push through each time. A call to the Pulmonologist’s office yielded a recommendation to try children’s Zyrtec, in the hopes that it will mitigate environmental allergies and ease his symptoms. I am less than thrilled with the ingredients in this OTC children’s medicine, but we are giving it a shot.
We have not had a GI appointment since Fall 2016, when we learned Beau’s eosinophil count decreased after his biopsy scope. Though his numbers were not low enough for remission, we were still quite pleased that his count had decreased and thankful we had avoided a feeding tube that the doctor had warned us was the next step if we did not see improvement. At the time of that scope, Beau was on an extremely strict Autoimmune Protocol Diet (AIP), swallowed steroids twice a day, inhaled steroids twice a day and Singulair.
After this promising news, we decided to cut back the dosage of swallowed steroids to once a day because he had dropped from 80th to 35th percentile in height in 6 months (read more about that saga here). We chose to cut back on swallowed steroids instead of inhaled steroids because we knew inhaled steroids would help him fare better throughout the winter with all his breathing issues.
We also transition off the AIP Diet and opened up his diet to just avoiding the top 8 allergens (dairy, eggs, gluten, soy, tree nuts, peanuts, fish, shellfish) plus a few other food allergies that we are aware of. The main additions to his diet that were not allowed on AIP include tomatoes and tomato products, sunflower seed butter, rice starch (for baking) and the occasional white potato.
We will see his GI doctor again in July and go from there, likely scheduling another scope soon after to check on his progress.
Ear, Nose and Throat
Beau had his third set of ear tubes put in back in September 2016, when he had his most recent endoscopy. This time, the ENT doctor put in T-tubes, which are semi-permanent. So far, these have worked great and he’s had no ear infections that we know of. He has had drainage periodically, but the doctor told me that this simply means the tubes are doing their job.
Hearing tests at the ENT office over the past couple years have been hit or miss. It’s tough getting a toddler boy to sit still and follow cues at home, much less in a doctor’s office with someone he doesn’t know. Most of his hearing tests point to good hearing in one ear and decent hearing in the other, though at lower decibels it tends to drop off in that ear. According to the ENT, it’s nothing to be concerned about at this point, though he will continue to be monitored.
Beau had speech therapy for about 6 months when we lived in another town, but those state-funded services ended once he turned three. Beau was evaluated again for speech earlier this year, just a couple weeks after he started preschool. The speech therapist who met with him in February 2017 had some concerns about his consonant blends, denasalization and omissions and substitutions for sounds. He had a more intense evaluation, which included a speech therapist, occupational therapist and physical therapist earlier in May. The resounding consensus was that he has improved so much since his initial evaluation, so much so that they are not recommending speech services at this point. I credit much of his improvement to his attendance of preschool three times a week. He will continue to be monitored every 6 months to make sure he does not fall behind.
Allergy and Immunology
Towards the end of 2016, we went to see Beau’s Allergist/Immunologist, but did not learn anything new. He was given another skin prick test, but nothing had changed from our previous visit. He is still considered anaphylactic for cashews and several other three nuts. The most common triggers for EOE are dairy and wheat, and he still has no surface-level reaction to those. But we still choose to avoid them per the recommendation of our GI doctor. I tried to tell the Allergist we are working toward finding Beau’s triggers so that he can be free of medicine, but he did not give me any hope of that happening and basically said: take the medicine; it’s not a big deal. This Allergist has personally worked in the well-known EOE clinic up in Cincinnati, and told me they would tell me the same thing. It’s a bit frustrating, but I will wait until Beau’s next appointment with his GI doctor before determining what to do about the Allergist for the future. At this point, I am considering switching doctors or maybe spacing appointments farther out.
In fall 2016, we began to notice issues with Beau’s back teeth, which looked brown like they were rotting. Our pediatrician attributed decay to the steroids, but our GI doctor attributed it to Beau’s daily slurry, which includes honey mixed with budesonide. Beau cannot drink or eat for 30 minutes after his slurry so that the steroids have time to be absorbed by the esophagus, which also means the honey sits on the back of his teeth. I think the decay is likely due to both explanations.
A pediatric dentist confirmed that all four back molars would need to be capped fairly soon, as these molars don’t fall out early like front teeth and could stay until he turn 12 years old. Capping these teeth requires sedation, at the very least, and sedation will only work if the child is cooperative. The other option is full anesthesia in an operating room. Beau’s lungs do not respond well to anesthesia, so I like to piggyback any procedures he has in which he has to go under. Seeing as how Beau barely let the dentist look in his mouth at his check-up, I wasn’t too keen that the sedation route would work. Also, our dental insurance wouldn’t cover a major procedure for several more months. So in the meantime, we have attempted a bandaid procedure of painting these molars with silver diamine flouride, which halts the progression of cavities. This will hopefully buy us a year, until insurance will cover the procedure and Beau will be more likely to cooperate with sedation.
Even though there is currently no cure for EOE or any eosinophil-related disorders, I’m hopeful that one day there will be. Until then, we are managing as best we can with the resources we have and looking for other treatment alternatives besides just medicine.