A parent in my caseload recently told me that her child – in addition to getting an autism diagnosis – had just been given a diagnosis of eosinophilic esophagitis, or “EE”. Both diagnoses are not unusual in kids in my caseload, and they frequently show up together. So it didn’t surprise me to hear this from this parent. The part that surprised me was the play-dough birthday cake.
Having EE means many food proteins become intolerable, and can’t be eaten. This family had been given such a dismal outlook on how to feed this child in the context of EE that, for birthday time, they made a prop birthday cake out of play dough. Candles were real, cake was fake – just a prop to pretend with. The cake was not to be eaten, just looked at, and used as a vehicle for birthday candles. No one had found a way to recover the child’s tolerance for even a few foods.
One of the best things about my job is hearing anecdotes like this. They are certainly motivating. In my view, when expert medical teams around the country leave children with props for cakes more than once or twice in a lifetime, something is awry. First question: Why can we not do better? Second question: Why are these children getting EE in the first place – a condition that is regarded as recent in pediatrics?
It’s tragic that EE is now so common that moms’ groups and list serves exist to support families needing tools to create a non-cake. For now I’ll skip opinion and analysis of why EE (much less autism) has emerged among this generation – that’s a whole other blog. It’s also tragic that, as was true in this case, once the doctor finds this, no referral was made to a professional who can work on effective solutions: Safe foods, formulas, recipes, the right probiotics, or bowel microflora corrections that can support growth, gain, learning, and development. I hear this all too often.
EE is a fancy long name for too many white blood cells in the walls of throat tissue. White blood cells show up when they think there is a job to do, like fight an infection. But in EE, the culprit is often allergy or sensitivity, not infection, so the white blood cells keep showing up for no reason. They can eventually damage the throat (esophagus). The eosinophils (white blood cells) are much like those that are too active in kids with inflammatory conditions like asthma, skin rashes, or chronic sinus infections.
EE is painful. It often occurs with reflux, which exacerbates the EE and pain. This is especially challenging for kids who are non-verbal, because they can’t tell you when they are in pain. They usually act out; it’s their only way to communicate pain and frustration. These are the kids in my practice who grab food away from family members, because they don’t want their siblings or parents to have pain. They think food causes pain for everyone, that pain with eating is just part of life. I’ve also met kids who take pain out only on themselves, with self injurious behavior. Tragic part: Seeing them medicated for “behavior” rather than screened and treated for a painful GI condition.
The good news is children with EE may be able to improve the health of the esophagus and GI tract with some out-of-the-box measures, along with the tried and true. Work these into your child’s routine and expect improvement after 4-6 months, to allow time for tissue repair.
– Use elemental protein sources. These are specialized formulas that come in various formats: Ready to drink in a juice box and straw that your child can bring to school or pack to travel; powdered, mixed as one does for infant formula; or modular – that is, just pure powdered amino acids (these replace food protein) that can be mixed in anything, from spaghetti sauce or apple sauce to smoothies or gravy. Brand names are Elecare, Neocate Infant, Neocate Junior, or Splash EO28. These are covered by insurance for EE in some states.
– For an elemental protein source for kids who hate the taste of formulas above (I get it – I’ve tried them all and my own son used some of these for years), try Nutricia North America’s amino acid mixes, usually made available for modular feeding in G-tubes. Blend into safe foods for you child to use orally. I have used this tactic often with good success; you will need a dietitian’s or doctor’s authorization to order this yourself. Though amino acids don’t taste good, finding ways to flavor smoothies is a possible – think odd combo’s like avocado and bittersweet cocoa powder (dairy/casein free). For recipe ideas, visit FoodSensitivityJournal.com.
– Get food allergy (IgE) and food sensitivity (IgG) screening. These screenings can describe two different ways that the immune system may be reacting to foods. Prioritize the worst offenders by removing them, rotate the rest. Removing all food protein is an extreme measure that is usually unnecessary and unsuccessful, even in kids with multiple allergies and sensitivities.
– Treat intestinal fungal (yeast or Candida) infections. Candida species can worsen reflux, disrupt normal digestion and absorption, and trigger painful constipation if allowed to flourish at the expense of beneficial bacteria in the human gut. Untreated bowel infections are a top finding in my practice, for children whose treatment for EE failed at their major medical centers.
– If grains are an issue – and gluten in particular – there are still ways to make a birthday cake. Get to know the many options available for gluten free baking: Mixes, cook books, and recipes are everywhere. Gluten free birthday cakes are indistinguishable from a wheat flour cake when done right. Eggs can be replaced with non-protein egg substitutes.
– If your child has used antibiotics often, replenish healthful gut bacteria with probiotics. Use potencies of at least 15 billion colony forming units (CFUs) per dose, with blends that include Lactobacillus and Bifido strains. Check Special Needs Kids Go Pharm Free for more detail on using probiotics in infants and children. Some children in my practice have responded best to potencies as high as 60-100 billion CFUs/day of mixed strain friendly bacteria probiotics. Most store bought brands deliver 1-5 billion CFUs per dose. If you’ve tried probiotics from your local health food store and not seen results, you may need to go to a stronger product. Consult a provider experienced in using these.
– Extreme and severe EE cases may be placed on an elemental formula diet, which lets the GI tract rest, heal, and recover, while getting the nourishment it needs. Do this with close medical supervision and have a plan to transition back to food within a few months. Monitor gut microflora and keep it healthy, as elemental formula may shift the colonies of microbes in the gut to less favorable species. Insist on referral to a knowledgeable pediatric dietitian to help you. Liposomal glutathione is a supplement that has been helpful in person with inflammatory bowel conditions; add this to your regimen too if you want to accelerate gut tissue healing. Glutathione is an antioxidant that is ample in a normal, healthy bowel, but depleted in persons with inflammatory conditions of the GI tract.
– Good news has continued to emerge on potent natural anti-inflammatories like curcumin and turmeric. Eating these in foods is fine, if you like lots of these spices and of course, if your child can tolerate eating foods. But when used medicinally, higher amounts are needed than are normally in a serving of Nepalese curry. If your child can swallow capsules, curcumin and turmeric may help cut inflammation while helping to balance bowel microflora too. Enhansa is a product showing success in my practice for some children (I don’t sell it; you can order it from Lee Silsby Pharmacy).
Here are some of my favorite resources for kids with EE, and multiple food protein intolerance/allergy:
Gluten free girl (see the “cake” button)
Mary Capone, celiac chef (Italian specialties a specialty)
Neocate Junior elemental formula for kids over 1 year old (link from here to infant options too). This can be purchased over the counter or prescribed. It’s widely available on sites like amazon, e-bay, or NexTag; coupons are often available to reduce the cost of Neocate. Some states may cover this formula on insurance with an EE diagnosis.
State by state insurance mandates for specialized formulas (inherited disorders)
Essential Amino Acid Mix – a powder that can be added to soft foods or thick drinks as a safe protein source. This requires authorization from a registered dietitian or physician, and may be covered on insurance in some states