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7 Things I’ve Learned From Kids With Autism

7 Things I’ve Learned From Kids With Autism

Hard to believe it has been eighteen years since I began my work in pediatric nutrition, starting with the surprise landing of my own beautiful, red head, now-grown-and-handsome-launching-for-college son (surprise because I never thought the red hair in my family would carry through, and because he has always been a surprisingly intense guy).

If you don’t know what dropped me into this niche, read my bio here. Long short, it happened to my family. In 1996, I was on my own as a new mom, scratching my head (clawing at it? until it bled?) trying to figure out what had happened to my amazing baby boy and how to fix it. For all the gory details, epiphanies, and crazy that we went through with doctors, schools, and mean people, read my first book here. I had to write it down – because I knew that I could not possibly be the only mother witnessing such struggle in her baby while all our doctors told us it was normal. How many other babies were going through this “normal” that was not normal? How many would suffer life-long disability because of it? Would my son be one of them? Those were my questions. My son was eighteen months old before a now-renown gastroenterologist named Tim Buie told me that indeed, having explosive foul burning wet stool all of your life, plus multiple sensory and other debilitating problems, was not normal at all.

Since then I’ve had the privilege of helping hundreds of infants, children and teens in the pediatric nutrition practice I formed as a result. Many had autism diagnoses, many had autism features but no label. Among those, some were already worked up by specialists for myriad physical findings. So, I’ve been honored to be entrusted with countless physicians’  notes, reports, lab findings, and chart notes in these children’s files – an education in itself. Some of these kids were simply worked over by costly specialists and had not enjoyed successful treatment at all. Others were treatment naive – they got a label, a brain scan, and some behavior therapy. Here are things I’ve learned, both as a parent and as a clinician. I hope they help you on your journey with your child, whatever their label may or may not be.

1 – Labels do not matter. What matters is how a child presents. Look at the child. Work them up as though there is no label. Disregard the word “autism” and simply investigate physical presentation. Never accept “Head banging, anxiety, teeth clenching, yelling, fecal smearing, chronic constipation, weird eating habits etc etc are because he has autism.” That is a lie. Autism does not cause any of those things.

2 – When a child feels well, they are happier. They can learn. They can thrive.

Feeling better, ready to play!

Feeling better, ready to play!

3 – Many children with autism do not feel well. They can’t tell you because: (a) They are non-verbal. (b) they have always felt this way and don’t know any better. (c) They are awash in a (treatable) opioid brain chemistry that dulls their sense of pain (ever watch your child with autism bonk his head, hard, and just keep going?)

4 – If your doctor tells you there is nothing wrong, but your intuition tells you something is wrong, your intuition wins. True story: So far, I have not met a mom whose intuition was wrong.

5 – I have not yet met a child with autism with an entirely normal physical work up. I don’t mean a normal physical exam, I mean a normal work up for everything: Allergy, autoimmunity, inflammation, gut flora, mineral balance, food intake, toxicity, or gastrointestinal findings.

6 – There are two kinds of normal: One your insurance company will pay for, and one that is your child’s birthright. Guess which one is healthier?

7 – Every child with autism is in there. They are cogent, and desiring connection with others, even if not on a level you may understand. They may not feel well enough to express these things.

Each and every child with autism or autism features deserves to reach for their innate birthright of vibrant health, and connectedness with their fellow humans. Even those seemingly desirous of a lot of isolation, on some level on their own terms, need connection and love. Find the path to your child’s health and connectivity whatever it may be. I can’t wait to see what other amazing things my son will do in this world (he’s already blown our socks off). Had we listened to the naysayers, dark-outlook and criticizing teachers, meanies, and downright misinformed doctors when he was little, I shudder to think where he would now be (extremely disabled, or, six feet under). Thank you to all the providers and friends who joined our journey to hold my son up with us. It takes a village!


Can nutrition help your child with autism? I don’t know. But I did write this e book to help families approach their health care providers with the right questions to find out. Click here for Five Essential Lab Tests For Kids With Autism

Why Pediasure May Make Your Child’s Growth Impairment Worse

Why Pediasure May Make Your Child’s Growth Impairment Worse

Need more help than you’ve found in this post? Make an appointment to work with me here. I am not able to provide individualized care advice in this forum, but look forward to working with you. Thanks for stopping by!

Recently a parent was surprised to hear me mention that food allergies and sensitivities can create growth impairments in infants and children. Like many parents, this one had been told to turn to products like Pediasure to help his child gain and grow. But it wasn’t working.

I see this a lot in my practice. Undiagnosed and poorly managed food allergy, sensitivity, or food protein induced enterocolitis syndrome (FPIES) are probably the most common problems I encounter. But it still surprised me when a blog I posted on alternatives to Pediasure went viral. I realized that this means that Pediasure is possibly the top go-to for pediatricians nationwide, when they see an underweight child. And that is downright unfortunate.

As I explained in that Pediasure blog, if a child has a reaction to the proteins in Pediasure (milk and soy), then this product is going to do more harm than good. Besides weakening growth pattern, these reactions can cause diarrhea or constipation, rhinitis, dermatitis, or brochospasm. But, it’s routine for pediatricians to hand out Pediasure samples or coupons anyway, without checking if a protein intolerance, allergy, or other reaction is part of the problem.

If your child is experiencing symptoms described on this page, and especially a growth lag, it’s time for some lab work or professional guidance on an elimination trial. Inconvenient? Sure. But you might prevent months or even years of frustration as your child struggles with a withering growth or feeding pattern, frequent malaise, cognitive or developmental delays from low nutrition, or picky eating. This I have seen, all too often – and it’s all preventable.

Coincidentally, not long ago, I was contacted by Abbott Nutrition, the makers of Pediasure. They wondered if I would like to create webinars for them about autism and nutrition. I would have loved to, but I gently explained on the conference call that I rarely recommend dairy or soy protein sources for kids with autism, because our lab work-up usually shows these proteins to be reactive in these cases. So, no, I could not create webinars for fellow RDs or MDs that would keep this long-known piece of the autism puzzle out of the powerpoint.

That was sticky. So I threw the Abbott folks an olive branch by explaining that these kids can at times thrive with an amino acid based formula like Elecare, which Abbott also makes – and this is true. However, apparently, the Abbott people had somehow remained in the dark about all this for the last fifteen years. Needless to say, they later decided to “move the project in a different direction” – which I took to mean, find a dietitian who would help them sell Pediasure to families of kids with autism.

Hopefully that’s not you. There is so much more you can do, and do better. Solutions? If your child is already stuck in a growth or developmental rut, and showing diffuse signs like frequent colds or illnesses, fatigue, shiners at eyes, crabby or anxious affect, underweight, or funky stools, then it’s time to look for why this is happening. So far, in my fifteen years in practice, I’ve never met a kid who didn’t have a “why”. And we can usually find a solution.

Start with some thorough testing for reactions to foods. Here’s the rub: There are many kinds of reactions that the immune system or gut can contrive. If you’ve had basic allergy testing that was negative for your child, there’s probably more to the story. Here’s a strategy:

– If your child has IgE allergy symptoms like hives/vomiting/tingling of still unknown origin, complete a comprehensive IgE food antibody panel – go beyond the usual few foods tested (milk, wheat, corn, soy, peanut, egg). Great Plains Lab (GPL) and Genova Diagnostics (GDX) offer full panels, and I will request these for my patients where indicated.

– If your child does not have IgE allergy symptoms or positive results, but does have any of these: Bloating, reflux, mixed irritable stools, constipated stools, loose stools, anxiety, intermittent skin rashes, picky weak appetite, or trouble sleeping, then consider an ELISA IgG food antibody panel. GPL and GDX offer test panels to screen over 90 foods with one small blood sample. These reactions can appear often and independently of the IgE reactions, so testing both can be important.

– If you’ve done all this testing and still have no answers, consider a white blood cell antigen test with ALCAT labs. This is another option I offer in my practice. It examines yet another way that the immune system may react to a food protein, separate from antibody production. Looking at how white blood cells respond to food proteins is fraught with challenge because there can be false positives, but this test can uncover missing pieces in some cases.

– Even more detail can be scrutinized with IgG reactions to other compounds derived from food proteins in our bodies, and for cross sensitivity to our own tissue (autoimmune reactions exacerbated by food proteins) . Cyrex Labs offers these panels.

– If your child has firm or constipated stools, an extremely rigid appetite for wheat or dairy foods, and horrible behavior if he doesn’t get those foods, consider a gluten casein urine peptide test from GPL. This reaction to wheat and dairy protein is not immune-mediated. Instead, it assesses how completely the gut digests these proteins, and whether the gut wall is overly permissive in taking up poorly digested protein fragments (peptides) of gluten and casein. Not an allergy, but a reaction that can make your child miserable never the less. Peptide chains from these proteins mimic endorphins in the brain. This means they are addicting, and will not only create fierce rigidity in eating patterns, but will exert an opiate like effect on your child’s brain as well. Children with poor verbal or social skills, who have aphasia (no speech), or who have very delayed speech may be under the influence of these dietary opiates. Other features of dietary opiates are high pain tolerance, happy affect except when hungry (Jekyll/Hyde) or uncontrollable tantrums. Toddlers and young kids with an active opiate effect also tend to wake between midnight and three AM, when they may laugh, babble, want to play, or make noise, though may not be unhappy or crying for parents.

– If you already know that gluten is a problem, but aren’t sure what other grains are safe, several labs offer an array of tests to review this very question.

– If you’re still wondering if gluten is the problem, visit my blog on gluten free diets to learn about that testing.

There is no shortage of options for lab testing on food reactions. The trick is in picking the right ones based on your child’s history and presentation, and this is precisely what I do for my patients. Many of these tests are not in your pediatrician’s repertoire, or even your pediatric allergist’s repertoire (if they were, they would have offered them already). Once we have some results in hand, we interpret them in the context of your child, and can create a plan for what to eat.

Transitioning to new foods for a youngster isn’t as hard on them as it is on mom and dad. It means parents have to learn new shopping, cooking, and kitchen routines, and this can be disruptive at first. Balancing this with siblings is a challenge too. But for many families who have watched a child wilt into growth regression, weakness, developmental delays, or frequent infections, it’s worth it.

If Pediasure helped your child, fabulous. If it hasn’t worked in your family’s case, rest assured – there are many options, many answers. If you’d like help with your child’s feeding and growth, schedule an appointment – I look forward to hearing from you!

Stool Testing For Kids: How And Why To Do It

Stool Testing For Kids: How And Why To Do It

One of the more frequent lab requests that I make in my practice is for stool testing. Why? Because it tells me a lot about what is going on in a child’s gut, without drawing blood or going under anesthesia for endoscopy or colonoscopy. In fact, you may be able to get more action and traction from the findings of this type of test, than from having your child scoped – an invasive, expensive, and challenging procedure. In that sense, it’s a lot of bang for the buck, and easy to do. You don’t even have to tell your child the test is being done (see how below), or leave home.

Often parents tell me, “This test was already done. Everything was normal.”

Here’s the thing: If this was done by your gastroenterologist or pediatrician, chances are that only the most serious bad actors were screened. These are things like Giardia, Salmonella, Shigella, certain types of E. coli, microscopic parasites (or bigger ones), or Campylobacter. These are super nasty microbes that usually trigger obvious symptoms like diarrhea or fever. They can be present with chronic, non-specific symptoms too. Among kids in my practice with this work up already done, finding one of these is somewhat rare.

Does that mean there is no problem? No. The old adage “if you don’t look, it isn’t there” fits here. Stool analysis is no exception. There is much more to assess than whether or not your child has an egregious infection. FPIES, constipation, diarrhea, difficulty potty training, food allergies, growth and feeding problems and more are conditions that are responsive to and dependent on gut microbes, digestive capacity, inflammation, and more. Detailed stool testing can look at all this. Why doesn’t your doctor use it? Mostly, because insurance doesn’t always cover the more detailed testing.

I’ve relied on this often to explore why a child is belly-bloated, has hiccups or reflux, won’t grow well, won’t each much, has unbeatable sugar cravings, or is painfully constipated. Stool testing in this realm includes assessing the profile of beneficial bacteria too, which can guide the use of probiotic supplements as well as foods to support healthier gut terrain.

Testing is available to include Candida screening (aka yeast or fungal species in the gut) in detail. Several labs specialize in not only characterizing how much fungal material is in a stool sample, but exactly what types are there (there are at least thirty different types of fungal species that my end up in a human gut) and what will kill them (prescription meds and herbal tools). Conventional tests may simply say yeast is present or not in a stool sample, or not even look for it at all. “It’s normal for a human gut to harbor some yeast”, your doctor might say. “It’s of no consequence, until it’s visible thrush, the white stuff coming out your child’s anus, or coating your child’s tongue.” But there’s more to it than that: How much yeast is normal? As it turns out, there isn’t clear consensus on this in the “standard of care” universe (that is, what insurance companies will pay for). Some kids also have antibody reactions to ordinary yeast strains, meaning that even small amounts in the gut will be quite irritating, behaviorally and for stooling or appetite.

Why does this matter? A healthy gut and immune system control yeast, keeping it to low levels. But many circumstances can leave the gut dominated by yeast – at the expense of healthier, friendlier microbes that we need for good digestion, absorption, and immune function. Symptoms of this scenario can include a chronically bloated belly, or large, hard to pass stools. It can trigger constipation so severe and digestion so sluggish that hospitalization is needed to remove fecal impactions. Others may experience fatigue, mood swings, behavior spikes, or diarrhea with yeast overgrowth in the gut. Yeasty guts also drive rigid appetites that keep kids eating starchy, sugary, empty foods and away from nourishing foods rich in minerals, healthy fats, and protein. All of this can be going on with no particularly notable changes on usual lab tests. Can it really be that bad? I have encountered one case in which a child needed hearing aids by age 10, due to an unertreated, chronic fungal overload. As his mom explained, serious intervention wasn’t offered until “the white stuff was coming out of his ears.”

It gets worse: Once well settled in a human gut, yeast microbes can shift to a mycelial form that behaves like ivy growing up a chimney: It roots into the intestinal wall, making micro-perforations, akin to how ivy anchors itself in the mortar between bricks. This makes the gut too permeable, too permissive. Larger molecules than are normally allowed can pass into circulation, triggering reactions to foods. Voila: You’ve just created a food allergy or sensitivity, thanks to a “leaky gut”. Other gut infections and conditions can create leaky gut, but for sure, yeast is a player that must go if you want better feeding, growth, digestion, and absorption for your kids.

Besides seeing the fungal burden in your child’s gut, many markers for digestion and inflammation can be included, along with extremely sensitive DNA screening for microscopic helminths and parasites. Your doc may say these don’t matter, and we all carry them. But what I have observed time and again is that for underweight small children, they do matter, and can mean the difference between only tolerating three or four foods without reactions and growing poorly, to digesting many foods well and gaining and thriving. Every kid is different.

Working with a provider experienced with this testing can save time and trouble. No single test can answer all the questions, and all tests have limits. These tests are no exception. A helpful back up is a urine microbial organic acids test, also available to collect at home. This test picks up by-products of toxic microbes, rather than detect the microbes themselves. If the toxins are present in urine, then the microbe is active somewhere in the body, perhaps beyond the gut. Still, viewed in the context of the child’s food intake, growth pattern, and other signs and symptoms, I’ve found detailed stool tests to be one of the most helpful tools in my practice – especially for detecting yeast overgrowth and possible Helicobacter pylori infection that nobody had yet noticed.

Fun fact: Blood-draw antibody tests for H. pylori are a less reliable way to discern active infection, but they are commonly used for that purpose. H. pylori is a disruptive microbe that can trigger ulcers, reflux, and weak digestion; it can handily establish itself in the digestive tract in children with weak nutrition or poor growth status.

H pylori culture plate

How to collect a stool sample without telling your child

Got a nervous kiddo who doesn’t want you messing with his poop (who does?)? Here’s how to capture a sample:

  • Drain the water out of the toilet, by shutting off the valve behind the toilet.
  • Then flush it, so it empties out its water, and doesn’t refill.
  • Secure a generous hammock of plastic wrap loosely across back two-thirds of the toilet bowl, and close the seat (not the lid) over it. The idea is to let the stool sample fall into the plastic, with little or no contact with toilet bowl water.
  • If necessary, remind your child not to flush the toilet (some kids don’t anyway).
  • Once the sample is in the toilet, lift the plastic with the sample out of the toilet bowl, and follow instructions in your home collection kit from there. Don’t forget to fill your toilet bowl again with water by opening the spigot behind the toilet!

Do kids need to know? Unless your child enjoys this scrutiny and detail (doubtful), which many will not understand anyway, they don’t need to know. Who wants their poop scrutinized and discussed? Nobody, frankly. For older kids or kids who are the more vigilant type, if they must know or are likely to notice, the simplest, plain, and least invasive information is best. Let them ask questions if they need more information. “The doctor is looking for anything that could make your stomach hurt” may suffice for younger ones. Err on the side of less, not more.

Long short, if your child has had GI consults and no results, consider more detailed functional stool analysis. I have a number of tools at my disposal for this and can help you complete this testing. It may yield enough new information to help your child access effective support and treatment, so they can feel better, eat healthier, and thrive.

Baby Reflux and Baby Poop: What’s Normal, What Isn’t, and What To Do

Baby Reflux and Baby Poop: What’s Normal, What Isn’t, and What To Do

Note: Questions for individualized care advice cannot be answered in this forum. For individualized help with your baby’s reflux, bowel habits, feeding or growth, make an appointment so I can give the support you and your baby deserve. You can also learn more on how to help your baby in my book Special Needs Kids Go Pharm Free. Get a copy today if you need step by step instructions that you can try at home. Lastly, if you’re new to my blog or practice, get an intro to integrative whole health for kids here – along with a freebie for joining my list! Thanks for stopping by! 

Babies, like everybody else, need to move their bowels daily. Stool that sits in the intestine and colon for too long permits toxins to flow back into circulation, can feel painful or uncomfortable, and can diminish your baby’s appetite. Stool that passes too fast will carry too much fluid out with it, and nutrients and energy won’t be adequately absorbed. More than anyone else, babies are quite sensitive to these dilemmas. Occasional changes in this pattern are of no consequence; persisting patterns are. This is common sense as much as it is sensible nutrition science!

Many things disrupt stooling for babies. Teething, stress, immunizations, antibiotics, badly tolerated foods, and infections or illnesses can all cause changes in stooling pattern, but the changes should be temporary for your baby. Even if your baby has special needs or circumstances, make restoration of comfortable digestion a priority. On balance, your baby should comfortably pass one or two formed soft stools every day (possibly more if exclusively breast-feeding), and it shouldn’t smell terrible. Breast-fed infants have softer, mushier, wetter stools that look more seedy and light brown or gold, and these babies may pass stools more often. Younger babies may also have more frequent stools. But if any of the following signs persist for more than two or three weeks with no explanation, consider it a flag for distressed digestion and absorption. Think about making a plan to correct it, so your baby can absorb all the nutrition he needs to grow and thrive:

  • More than four stools per day
  • Liquid, runny, or watery stools
  • Mucus in stools
  • Undigested food in stools
  • Stools that are explosive or overflow onto your baby’s back or neck
  • Yellow, gold, tan, pale gray, black, or green stools (dark mustard colored stools are normal for breast fed infants)
  • Blood in stools
  • No stools passed for more than three days on a regular basis
  • Hard, dry, pebble-like stool that appears painful or difficult to pass
  • Plugs of hard stool followed by explosive loose stool
  • Unusually foul-smelling stools

Probiotics are one of the corrections you may want to use to restore a healthy stool pattern. Generally, these guidelines can help. Check with your doctor. If he or she isn’t sure about how to dose and use these, you can always schedule time with me to get targeted help.crying baby

  • Place 1/8 teaspoon of bifidobacterium blend probiotic powder in your baby’s feeding once a day. If this is tolerated and no improvements ensue, increase to ¼ teaspoon.
  • Stop if you notice explosive diarrhea, hives, fever, or sudden rashes.
  • Look for Bifido strains such as B. breve, B. infantis, B. longum, and B, bifidum in the product, and a potency of at least 8 billion CFUs per dose.
  • Safe Lactobacillus strains that can be added for babies nearing their first birthday or for toddlers are L. rhamnosus, L. casei, L. paracasei, L. gasseri, L. reuteri, and L. salvarius.
  • Don’t use L. acidophilus in babies, premies, or infants with NEC. The form of lactic acid made by this species appears to be tolerated poorly in babies. In fact, one study showed that it actually increased allergy (noted as skin rashes) in babies.
  • Probiotic powder can be blended with soft food, breast milk, or formula. You can also dust some on the nipple of the bottle or the breast.
  • Infants should avoid probiotic strains and blends that are intended for adults.
  • Don’t give probiotics at the same time as an antibiotic. The antibiotic will kill the probiotic. Wait until the course of antibiotic is completed, then begin using a probiotic daily.
  • If your baby must use antibiotics for longer than two weeks or indefinitely, you can add probiotics at the opposite end of the day. For example, if an antibiotic is given in the morning, give the probiotics in the afternoon or evening.

What does this have to do with reflux? Probiotics can help digestion a lot when used correctly. Digestion, when normal, permits the baby’s stomach contents to move along. When this isn’t happening, food sits for too long in the baby’s stomach. This feels like heartburn, and your baby will cry and be miserable. This can be avoided without medication in many cases. Changing formula, changing diet when breastfeeding to avoid trigger foods, or using various herbs have all proven effective, without the side effects from using reflux medicine for too long. Note: Reflux is not the same as spit up, which happens to babies who are doing just fine. Your baby does not have to lose feedings on your shoulder to be experiencing reflux! Signs can include misery, crying, hiccups, burps, arching with crying, pulling away from feedings, and weak growth pattern.

Goat milk can be used to make an infant formula that many colicky babies can tolerate nicely

Goat milk can be used to make an infant formula that many colicky babies tolerate nicely

Reflux, diarrhea, constipation, and colic are not necessarily benign for a baby. They can signal malabsorption, imbalanced bowel microflora, inflammation, infection, milk protein intolerance or allergy, or any combination of these, especially when they persist for weeks on end. These problems can worsen reflux if a baby already has it, or trigger it to begin with. Giving reflux medication can give a quick reprieve from symptoms, but using it longer than a few weeks may set a downward spiral in motion. Work on the causes of the reflux if you can, rather than medicating it away. Reflux medications alter pH of the GI tract, and make digesting and absorbing food harder. They also shift your baby’s gut micro-biome away from ideal species of bacteria that help the immune system “learn”, protect from viruses, and digest food. Instead, reflux medicines favor fungal microbes and detrimental bacteria such as klebsiella or clostridia. These microbes produce toxins of their own that further alter the gut’s pH. They can injure the gut wall, and circulate to your baby’s brain to alter behavior or even trigger seizures.

Some babies whom I’ve encountered in my practice came to me “stuck” on reflux medication, and this is a scenario to avoid. In these cases, the baby will need increasingly higher doses that become less and less effective. One child I worked with was given reflux medication daily for the first three years of his life. Though he had been off this medication for three years by the time I met him at age six, he was stunted with delayed bone age and poor bone mineralization, growth failure, developmental and learning problems, and was unable to eat enough to sustain normal growth since eating was so uncomfortable. He’d had chronic infections as an infant and toddler, needed antibiotics often, and became asthmatic as well. Another youngster who came in for nutrition care at age three was also stuck on it, had fallen into growth failure, and showed the same pattern of not being able to achieve a typical food intake to support growth and gain. Many other toddlers I have met show this pattern of growth failure owing to picky, weak appetites after using reflux medications for a long time (more than a month or two). Reflux medications are intended for short-term symptomatic treatment, not as a long-term strategy. You may have more success by trying the corrections described here first instead, so discuss them with your provider. Your baby will be healthier, and will grow and feel better , when digestion can evolve normally rather than with the digestive down-regulation from the medication strategy.

When unhappy poop patterns persist for weeks and months, nutrients and energy are not being optimally absorbed by your baby. Medicaitons for reflux or constipation may ease the symptoms, but won’t do much to improve the malabsorption. Toxins from this addled gut can be absorbed more easily too. Babies with weak growth amid these symptoms are sending a clear signal that it’s time to intervene. Don’t wait for your baby to slide into a failure to thrive (FTT) diagnosis, which means less than the 5th percentile in weight for age. Babies in growth failure need two to three times more calories per pound per day to recover a normal growth pattern, and this is even more challenging to accomplish when a baby has reflux or other GI issues. Intervene as soon as you notice a “dropping off channel”—that is, if your baby’s weight for age or length for age percentile drops more than fifteen points, it’s time to intervene.

This blog is an updated excerpt from the first chapter in my book, Special Needs Kids Go Pharm-Free. Get more strategies on kicking reflux naturally there  – including which herbs are gentle and effective, how to avoid allergy or intolerance to milk, breast milk, or other feedings and formulas, what commercial formulas to avoid and what to try, and tips on breastfeeding a colicky baby. There are many options before going to Zantac that your doctor may not know about!


The Milk Addicted Kid: Your Kid’s Brain On Dairy

The Milk Addicted Kid: Your Kid’s Brain On Dairy

An all too common picture in my practice is meeting a young child who is growing weakly or even presenting with failure to thrive (unable to grow above 5th percentiles), developing at a questionably slow pace, and behaving fiercely at the drop of a hat (tantrums). There may be reflux and constipation, possibly medication dependent. Worst case scenario, the child has required tube feeding, or perhaps even lost a section of intestine to tissue damage or inflammation. Parents are weary and have been around the block: Specialists in GI disorders, developmental pediatrics, feeding therapy, and perhaps a neurologist or speech and language pathologist have all had their go’s at the child, but – improvements – if any – are meek, and dependent on pharmaceuticals or weekly therapies.

Maybe your child isn’t this bad. Perhaps they just like a lot of dairy food. Even in that case, you might be surprised at how differently your child behaves, grows, sleeps, or interacts, once that dairy protein (casein) is no longer a major feature in their day. There’s absolutely nothing magical about dairy. Many other foods can deliver protein, better healthy fats and oils, and more minerals, including calcium.

What’s going on here? This mechanism is not an allergy (though allergy or sensitivity may be present at the same time – that’s a different reaction altogether). In this case, a chemistry has evolved in which your kid is literally addicted to milk. You can measure this with a urine test. This is not a standard-of-care test, and your pediatrician will likely never have heard of it. Called urine polypeptide test, it screens for the protein fragments  (“peptides”) leftover when dairy protein (casein) is poorly digested. It also screens for same from wheat protein (gluten). These over-sized peptides exist to a tiny, insignificant degree, after a healthy gut with good digestive function takes apart a wheat or dairy meal. But with weak digestion, an overly permissive gut wall (that is, a gut that lets these too-big peptides pass through to circulation), and the wrong gut bacteria (that worsen rather than lessen the impact of these peptides), these peptides will show up in urine in larger than expected amounts.

If they’re in urine, they are circulating widely, and can also be in your child’s brain. Why is this bad? Because these peptides mimic opiates – so much, that they are named after morphine: Casomorphin and gluteomorphin (also called gliadorphin) act like opiates in the brain. They bind the same receptors as drugs like morphine.. and yes, heroin. They are indeed potently addictive. Children who adamantly refuse foods other than just wheat, just dairy, or both may have this addiction active in their brains.

This is your kid's brain on dairy or wheat overload

This is your kid’s brain on dairy or wheat overload. Source

Not only does this deny a child other more nutritious foods needed for their brains and bodies to grow and thrive, it can cause  constipation (ever needed a morphine drip or opiate-based painkiller?), and disrupt behavior, learning, social skills, and language development. In my experience, the more diet-sourced opiate measured in urine, the less verbal and more developmentally delayed the child will be. In fact, clinical trials with naltrexone, a drug used to treat opiate addiction, have shown better behavior in children with autism and increased verbal ability.The more functional the child is, the less likely that casomorphin will fall out of range – but if symptoms are active for constipation, hyperactivity, difficulty socializing, rageful reactivity, slow language progress, or dilated pupils, then I will look at eliminating the dairy anyway.

Most every child in my practice, whether they have an autism or sensory processing disorder diagnosis or no diagnosis at all, presents with nutrition challenges that can be addressed for better learning, growing, and being. Your child doesn’t have to be “special needs” to have a problem with dairy – see if the info below applies in your house.

Organic Yogurt Squeeze Tube

If your kid really likes these and eats 3 or 4 per day.. uh oh

What’s A Milk Addicted Kid?

These are kids who still rely on fluid milk as a major protein and calorie source, well past the age of twelve months, when weaning off breast or formula – as the bulk of daily calories and protein – is typically under way. They are drinking forty to sixty ounces of milk a day (about five to eight cups), and displacing solid calories because of milk intake. This lowers intake of other foods that kids need by age two or three. Milk addicts refuse other foods. They are often oral tactile defensive – that is, they hate varied textures in foods, hate to eat or chew, perhaps have delayed chewing skills (which is why some stick to the bottle in the first place), or still rely on suckling a bottle, thumb, or pacifier to calm themselves. Oral tactile issues or oral motor delays may keep this child drinking from a bottle beyond age three or four. When they accept foods, it’s often dairy items only – sweet yogurt, cheese, ice cream. A few random solids might be in the diet, but on balance, their diets lack vegetables, meats, fruits, or foods rich in essential minerals, vitamins, and healthy brain fats. There is often pallor, allergic shiners, white dots on fingernails, and a blank countenance. Growth failure or a weak growth pattern is common in this scenario too. Parents in this predicament are often told by their doctors and feeding therapists to turn to high-calorie milk-based drinks like Pediasure, Peptamen Junior, Carnation Instant Breakfast, or Boost, in hopes of providing a few micronutrients and extra calories. This won’t work, because it leaves the child addicted to opiates formed from casein, the protein source in these drinks. For non-dairy nutrition boosting options, click here.


These children often have neurological and sensory challenges that make a cold-turkey switch off of milk a sure fail. If bottle feeding is still in the picture, the cold turkey approach can really backfire, entrenching your child’s dependence on the bottle or milk, and fear of losing these, even more deeply. In this scenario, you need a nutritious milk replacement, minerals replenishment, correction for imbalanced gut microbes, and a sensory integration plan to replace the neurological organization that sucking on the bottle gives the child.

Developmentally, milk addicts (especially those with an autism diagnosis) who eat a lot of dairy seem to show the more profound language delays. When they are on the younger end, say age three or four years, they may speak more like a one to two year old, or be non-verbal. If they are school age, say six or so, they may have expressive language praxis issues, meaning that they can talk but not in a typical way. They may use echolalic language (repeating what they hear), misuse pronouns or refer to themselves in the third person, or misunderstand social context. This is often the first area of functioning that shifts when dietary opiates begin to disengage:  Your child may begin to use language in a new, more typical way; make eye contact; or comply more typically with your requests.. within 2-3 weeks of being dairy free.

What To Do About Milk Addiction

1 – Talk to your child’s occupational therapist, if you have one, about what can replace the bottle in terms of its sensory benefit. Children with sensory integration disorder using a bottle at a late age may legitimately need this oral activity for self-calming, which they might not have mastered in other ways. Suddenly removing it with no alternative may trigger more setback than progress. A few inches of surgical tubing can be knotted for a child to suck, chew, and pull. Teething rings as for infants may work too. If your child craves and actually eats non food items, this is another problem called pica. It needs assessment and treatment, as it too can impair IQ, learning, or development. Read about pica here.

2 – Replace any gluten foods first. Since gluten is not the opiate of choice for a milk-addicted child, it’s easier to remove it first. In my experience, kids don’t usually notice that the cookies, pasta, bagels, microwave macaroni and cheese, frozen pizza and so on are being replaced with gluten-free versions, as long as they still have their dairy fix. But gluten still has to go, because gluten can trigger the same opiate effect on the brain that milk protein does. Same goes for soy – so, don’t turn to soy milk, soy tofu, soy frozen treats, soy cheese substitutes, edamame, soy yogurt, and so on. Swap in the widely available gluten free versions first, with zero fanfare – and zero explanation, unless your child is functional enough to ask a few questions. Do not expect your child’s approval or even recruit their opinion at this point.

Flavored Milks

3 – After you’ve successfully launched the transition off any gluten foods that your milk addict eats (and some eat very few, so this can be easy), approach the bigger battle: Withdraw all dairy protein (casein and whey). Begin with casein-free ingredients where they won’t be noticed. When baking, making smoothies, mixing mashed potatoes, or using a pancake mix (gluten free), sub in milks from almond, cashew, hemp, coconut (full fat canned or from carton) but not oat (contains gluten) or soy. Do not use soy milk or soy yogurt – it will trigger the same opiate chemistry. Eventually, your child will completely avoid fluid milk from any mammals (including you mom!) and products made from those milks: Butter, margarines with milk ingredients, cheeses, yogurt that is frozen, creamy, Greek, low fat, any fat, or fat free; Lactaid and lactose free milk (still has casein in it); cream soups and dressings (Ranch dressing, chowders, soups thickened with cream or milk), ice cream, sherbet, pizza or anything else with cheese, Goldfish or Cheezits or cheese puffs, and so on. Avoid foods whose labels say casein, whey, calcium caseinate, powdered dry milk, butter milk, cream, sour cream, cottage cheese, cheese, Parmesan, milk solids, or butter. “Dairy free” does not mean casein free, so read labels carefully.  

4 – Balance gut microflora as aggressively and completely as possible. This may necessitate a functional medicine stool microbiology to assess the good and bad gut bugs, plus targeted use of probiotics, antibiotics, herbal anti-microbials, or fermented foods. Long short, if none of this is working, a troublesome gut biome would be high on my suspect list – so get this part sorted out. Need help? Contact me!

5- Begin nightly Epsom salts baths to replenish magnesium and sulfur. Both minerals help liver, gut, and kidney tissue release toxins that may pile up as your child’s gut biome shifts with the new foods he’s eating. Magnesium is calming as well, while sulfur is key for many digestive and liver enzymes. Use about a cup per tub, or a half cup for a toddler weighing less than 30 lbs. Soak your kiddo for 10-20 minutes.

6 – Put in some healthy fats! Oils from nuts, olive oil, coconut oil, ghee (clarified butter), avocado, grape seed oil are all excellent and healthful choices that you can sub in for cooking, baking, and dressings. Nut butters and nuts themselves also provide healthy varied fats. Fish oil supplements are a useful boost too, since milk addicts don’t get much (if any) omega 3 fatty acids. There are some excellent kid friendly products out there.

7 – Minerals! Supplement these until interest in mineral rich foods kicks in. Minerals are abundant in leafy greens, vegetables, bone broths, meats, eggs, and herbs. But before your kid is eating that stuff daily, bridge the gap with a mineral rich supplement. It should contain at least 15 mg zinc and cover selenium, chromium, manganese, molybdenum, and boron also. What about iron? Hard to say without you being my patient and completing an assessment with me. Iron is potentially toxic and deadly if dosed incorrectly. If marginal, it creates multiple functional problems (insomnia, hyperactivity, immune compromise, depleted serotonin and more). But don’t supplement it without guidance from your doctor. Or me.

You’re Good To Go!

The first few weeks of this may feel hardest, but stick with it – for a good four months at least. Some children respond quickly, some slowly. It all depends on the child’s nutrition picture at the start, and everyone is different. But one thing that usually happens in the first one to three weeks of total casein (and gluten and soy) removal is… Fireworks! When the opiates begin to vacate endorphin receptors in his brain, your child may start to be very unhappy with this new plan. They are experiencing withdrawal symptoms and it doesn’t feel great. The may stop eating, have more tantrums, not sleep well. Brace yourself – but don’t crack now. If you’ve done all of the steps here faithfully, you will minimize or possibly even totally divert the discomfort that this new food intake may briefly create. It’s temporary, and it is prelude to much healthier eating that feeds your child so he can learn, grow, and thrive to potential.