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Eosinophilic Esophagitis And Play Dough Birthday Cakes

Eosinophilic Esophagitis And Play Dough Birthday Cakes

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)

Gluten and Peanut Free Summer Camps

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.

Options to replace eggs in recipes

State by state insurance mandates for specialized formulas (inherited disorders)

States with mandated insurance coverage for specialized formulas for EE

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

Using Supplements Effectively: What Works, What Doesn’t

When do kids need supplements?

If you’re reading this, then you have probably already discovered, hopefully with some guidance from your team of health care providers, that your child has a nutrition problem. Or maybe you’ve come to suspect there’s a deficit for some nutrients in your child. Should you fix it with a supplement? Does that work? What’s the best way to use those?

These are important questions for children with special needs like diabetes, food allergies, asthma and inflammatory conditions, developmental concerns like Down’s syndrome or autism spectrum disorders, inherited metabolic disorders, seizures, or growth and feeding problems. As many as 60% of children with special needs have nutrition problems that can potentially impair their functioning, learning, growth, or development (1). It has been known for decades that keeping children well nourished, whether they have special needs or not, helps them reach their functional potential, by supporting learning, growth, and development.

Supplements may fit into this, and part of my job as a pediatric dietitian is figuring out if, when, and how they do. This is something to discern based on individualized nutrition assessment. I take into account several pieces: Medical history, signs and symptoms, a food diary, a child’s growth history, circumstances of the child’s gestational period, delivery, and early infancy, and so on. The last piece to fill in the blanks would be lab data, because lab data alone can’t describe a child’s nutrition status. Here are some tips to help you use supplements more effectively. More tips are in my book Special Needs Kids Eat Right (2009, Penguin/Perigee) which you can pick up in most bookstores or libraries, or order via your favorite on line bookseller.

– Kids need food! In fact, they need much more food per pound than adults. If an adult were to eat what a toddler needs per pound, that adult would need 8,000-10,000 calories per day just to maintain normal weight. Giving lots of supplements without enough food means your child will probably not be able to use those supplements as intended. So, before buying supplements, do the footwork to give your child adequate and nutritious foods. How to do this for picky eaters with special needs is covered in Special Needs Kids Eat Right.
– Supplements don’t fix problems caused by inadequate food intake in kids. Anxiety, insomnia, irritability, rage/reactivity, behavior, low muscle tone, fatigue, cognitive difficulties, frequency of infections or illnesses, and school performance are all affected by total food intakes in children. Give a balance of healthy fats and oils, clean carbohydrates that aren’t too sugary, and easy to digest proteins every day.
– If you’ve been given a list of supplements to buy based on lab results, beware. Giving a pill for each lab finding out of reference range is a cumbersome, ineffective strategy, in my experience. For nutrition interventions to work well, children need the right amount of food, foods they can digest well, and good digestion and absorption. Your provider can help you assess whether your child needs to repair digestion and absorption before giving supplements.
– Rule out bowel infections in your child with your health care provider before beginning a complex supplement regimen. Remember, whatever you feed your child will be eaten by his resident bowel bacteria first. New research is emerging to describe how important this bowel flora can be – from helping us prevent inflammatory conditions (2), to encoding our own GI tracts with the skill to make digestive enzymes (3). Other research shows that unhealthy bowel bacteria can impact behavior or even seizures in children (4, 5) – making it all the more crucial to balance this piece before using supplements that might “fertilize” the wrong bowel flora.

Those are just a few reasons why supplements need to be worked into a total care plan for your child, rather than given without thoughtful strategy. Work with your health care providers to get it right; given in the right total context, the right supplements can work very well for children. If you need more help and information, contact me or schedule an appointment at NutritionCare.net.

Citations

1. Nutrition In The Prevention and Treatment of Disease, 2nd ed. Ann Coulston and Carol Boushey, Eds. Elsevier Academic Press. Burlington, MA and London, UK: 2008

2. Maslowski KM et al. Regulation of inflammatory responses by gut microbiota and chemoattractant receptor GPR43. Nature 2009 Oct 29;461(7268):1282-6.

3. Hehemann JH et al. Transfer of carbohydrate-active enzymes from marine bacteria to Japanese gut microbiota Nature 2010 April 8;464 (7269):908-912

4. MacFabe DF et al. Neurobiological effects of intraventricular propionic acid in rats: Possible role of short chain fatty acids on the pathogenesis and characteristics of autism spectrum disorders Behavioural Brain Research 2007;176:149–169

5. Herawati R et al. Colony count candida albicans of stool in autism spectrum disorders. Clinical Pathology and Medical Laboratory, Airlangga University E-Journal 13(1):November-2006

Orange Poop and Purple Crying: Halloween Colors Haunt Kids With Autism

Orange Poop and Purple Crying: Halloween Colors Haunt Kids With Autism

Orange and purple. Pumpkins, Frankenstein, cute goblins. It’s Halloween.  When I was a kid, October was my favorite month. Not only did it bring my birthday (still does), it felt like the most fun time of the year to me. Hurtling around outdoors with neighborhood friends on blustery, chilly fall days was my idea of heaven. We spent hours unsupervised and untracked, roaming woods and fields, and playing til our fingers were so cold it was just time to go in. New England’s blaze of colors was my backdrop. Leaf forts, leaf piles, leaf-filled scarecrows with my dad’s old clothes. Carving pumpkins, coloring decorations. Costumes, candy, staying out late to trick or treat.

It’s so different now, as kids spend less time outdoors with unstructured activities, and trick or treat traditions have faded out as we’ve become a more fearful society. Even less of this autumn joy might apply for kids with autism, sensory processing disorders, epilepsy and seizures – not to mention food allergies. It’s bad enough that this can be a traumatic week for kids on the autism spectrum and special needs. Routines and rules run amok (see Autism and Halloween: A Sometimes Scary Mix with Kim Stagliano). Behavior norms that parents work all year to teach their kids on the spectrum flip upside down. At Halloween, for some kids, confusion and anxiety mount as there are treats you can’t eat, and it’s loud, and random. But I’ve learned of news this week weirder than any Halloween trick, news that makes the autism journey at this time of year even stranger for me as a clinician.  It’s called Purple Crying.

The CDC and American Academy of Pediatrics are putting some spin together to convince new families, obstetrics nurses, and NICU staff nationwide that it’s normal to have a screaming, trembling newborn. And that colic is a “a normal developmental phase, not a medical condition”.  It actually says that on the Purple Crying website – yes, there is a Purple Crying Website.

Here we have a well funded effort afoot to systematically rework your thinking on this, right down to giving CDs about it to new parents, to take home with the new baby. The tag line on all this sends chills down my spine: “A new way to understand your baby’s crying”.

I did not understand my son’s crying as a neonate. Though the Purple Crying site does not intend to say purple babies are happy babies, my son’s crying turned him purple, and blue, and even left him unconscious for fleeting moments. It rocked his body into spasms. It kept him awake for as much as twenty straight hours, unhealthy and extremely costly for a newborn, who must eat and rest a lot, in order to survive. His limbs quivered, shook, and straightened. Yes, we called the doctor. Yes, we went to the emergency room. No, the physicians did not do anything. In fact, they were annoyed with us, because my son’s diagnostics were inconclusive. Once there were no clear test results, we went from being treated as proactive smart parents to being treated as nervous foolish parents. I should count my lucky stars: Nowadays, this scenario might land me in jail. I would be scrutinized for shaking him, in the absence of a clear cause for his symptoms. As it turned out, his symptoms were caused by an adverse event to newborn heptatitis B vaccine. But nobody told us that. We didn’t even know he’d been vaccinated in the nursery at birth. But that’s another story.

Prolonged, inconsolable screaming and crying is a serious sign of distress for an infant. It is a common feature of an adverse vaccine reaction. Is this what the purple crying public relations campaign is really about? CYA for the CDC? Like this: Your baby is suffering, maybe from a poorly tolerated vaccine we want you to use, so just ignore the crying, please.

Well, okay. Let’s acquiesce that babies can just plain cry their nuts off, boys and girls alike, for no particular reason, through the first three or five months of life, and it’s all right. Let’s make that leap of faith, and presume that we evolved to cry for no reason. We somehow got to the twenty first century, and never noticed this about human infants (but not other mammals?). Let’s presume screaming for hours on end is simply not related to a possible vaccine reaction (that may trigger lasting developmental effects, by the way), or any sort of painful inflammatory response to anything in shots or foods. Besides, the CDC reassures us that babies can look like they are in pain when they are screaming, but they’re not. Amazing creatures – they can do this for hours a day, and it’s fine. If you saw a newborn deer shrieking ceaselessly, would you think it was not in pain? Or that it was behaving “normally”?

I hate it when the CDC contradicts itself, and they’re doing it again. Here’s why this is not fine. First, obviously, it is not fine to tell parents to ignore possible signs of a vaccine adverse event. Second, for newborns, crying is exquisitely spendy. So is insomnia. It is not safe, normal, or healthy for young infants to spend hours awake and crying, week after week. Newborns are growing so fast, they need to eat two to three times more calories per pound than older kids and adults, just to stay alive. If you ate what a newborn needed, and you weighed 150 lbs, you would need to eat about 8500 calories/day just for baseline wellness. Add screaming all day and never sleeping to that, and, well, how long could you last? Just breathing inefficiently or suckling poorly can cost a newborn precious small gains in weight at the the start of life, if energy balance skews week after week into the red. This lowers nutrition status, and that in turn lowers disease resistance. Nutrition status directly correlates with immune function. Why is the CDC saying it’s okay for babies to endure something that threatens their ability to fight infection?

My next family arrives for consult in about thirty  minutes. Was their nine year old child one of the “purple criers”?  After taking nutrition histories on special needs children for eleven years, I have noticed that they usually are. They usually have more difficulty than their typical siblings did as infants, with screaming, crying, colic, and the orange part of this post: Explosive, copious, loose, orange-gold stools.  These often fill the baby’s diaper, pants, and shirt.  Stool to the neck and ankles, three or four, maybe even eight or nine times a day.  My pediatrician back in 1997 did not say it was normal for my son to have bowel movements like that. But he did tell me it was probably coming from my son’s diaper (no joke – see this memoir I published on this back in 2002). Here in my office, too many years later, pediatricians are still giving parents some peculiar feedback on this: Now it’s “toddler diarrhea”, and it’s “normal”.

No folks, purple crying and orange poop are not normal or benign.  My clinical observation is this: The more purple and orange there is in a child’s history from age 0-3, the more developmentally delayed, disabled, or challenged with inflammatory conditions the child is later on. These colors may haunt these kids for years, with lasting inflammation, developmental impacts, learning problems, or growth problems.

Colic is not a “developmental phase”.  Colic is often milk or soy protein intolerance, and it is painful. This pain is avoidable, much of the time. Food protein intolerance is not the only reason why an infant would cry, but it does account for a lot of colic in babies. It has been over-treated with reflux medications or drops to reduce gas. I give this topic a lot of ink in Special Needs Kids Go Pharm-Free, and in this blog too.  Please don’t start believing that in addition to regarding it as normal for your child to have crazy explosive poop several times a day, it’s normal for your baby to scream in pain for hours on end, months at a time.

When I was trained in public health nutrition and completing rotations as a dietitian, I never heard the phrase “toddler diarrhea”. It is now so common, no one blinks as children struggle through infancy and toddlerhood without potty training until they’re four years or older, stop growing as expected, or develop multiple food allergies and asthma. For kids with autism, it’s practically a rite of passage – often one that never ends: I have ten year olds with autism in my practice who can’t potty train, who struggle with impactions and constipation so bad they need regular hospital admissions for clean outs, and school aged kids with ADHD who can’t join sleepovers because they still wet the bed and have stooling accidents at school on a daily basis. Maybe the CDC will join up with the American Academy of Pediatrics to call this normal too. There will be a website, a CD from your pediatrician, a TV ad campaign. Followed by, no doubt, the drug of choice to fix it (mostly, it’s Miralax – another over-prescribed, non-FDA-approved-for-kids drug).

Here’s to young parents out there who are too smart to go there. Listen to your instincts and make safe choices around your child’s health care. Keep orange and purple for the fun parts of Halloween, not the horrors that can haunt your children for years.