If you’re a parent facing a new autism diagnosis for a child in your family, your head might be spinning about now. Where do you start? Medication? Behavior therapy? Speech therapy? Occupational therapy? Different classroom? Social skills group? What to eat or nutrition is probably the last thing you want to think about… not to mention the fact that your newly diagnosed child is probably an epically picky eater. While you know they should eat better, they just…. don’t. Ok so… Feeding therapy?
Nutrition Must Come First With New Autism Diagnosis Because…. Nutrition must come first with a new autism diagnosis, because autism is a chronic condition with unique medical and nutrition features. Kids with autism have higher rates of ear infections, respiratory infections, food allergies, asthma, gastrointestinal problems, sleep disorders, seizures, and nutrient deficits. Nutrition deficits worsen all the problems in that list, and nutrition can help repair them too.
No matter what level of severity your child’s presentation is for autism, nutrition is an essential tool to tap. It can make other interventions go faster, and work better. Nutrition is so pivotal, so central to your child’s brain and development that it’s just stunning how current practice for children with autism has overlooked this. But you may not hear much about it from your care team, even if your team includes a gastroenterologist. Don’t be fooled into believing that it doesn’t matter or can’t change your child’s developmental progress.
Brains Are Only There Because Of Food… Your child’s brain happened because you ate while pregnant. Severe malnutrition while pregnant can make us spontaneously lose the baby. For pregnancies that are carried through less severe malnutrition, this will make the baby’s brain weight lower than normal, with fewer neurons and glial cells – a permanent change. That isn’t what happens in autism – but the takeaway here is that brains can only grow from whatever is eaten. You can leverage this to support the brain throughout your child’s life.
Nutrition continues to be crucial to brain development and growth once your baby is born. If nutrition is weak in the first years, your baby’s brain will have fewer glial cells, reduced myelination, and less synaptogenesis. In fact, there are five major processes that allow a human brain to grow and develop. While many processes unfurl to sprout a brain in a cranium, all of them are vulnerable to nutrition deficits. None of them happen to potential, without adequate food and nutrition. Impeding any one of these processes can lead to developmental features that can affect people with autism.
This all starts when you’re pregnant and depends entirely on what you eat. It doesn’t stop until the end of adolescence, and in that window, brains still depend on whatever is eaten, to build and run themselves. Kids’ brains need almost twice the energy of an adult’s, just for starters! The academic evidence base is rich, deep, and decades-long, when it comes to describing how nutrients and energy from food let the brain do its job.
With access to all the protein, fat, minerals, amino acids, vitamins, and energy that brains need to build themselves, and barring exposure to neuron-wilting toxins, brains can acquire skill. They sort, process, remember, learn, regulate, manage sensory inputs, and control motor functions. They run basal metabolic functions for us, like breathing, sleeping, filtering our blood and lymph, and digesting. Though there are critical windows and various periods of faster growth, the bottom line is that a child with a developmental diagnosis owes his or her brain every possible leg up, to be able to develop into an independent, functional, and contented adult, regardless of diagnostic status.
What’s the deal with autism and nutrition? What could nutrition have to do with your child and a new autism diagnosis? Big topic.
Your Care Team May Not Know What To Do About Nutrition… I’ve worked with children on the spectrum since 1999, providing nutrition assessment, support, and intervention. I’ve authored books on it, trained other professionals in autism and nutrition, blogged on it, and lectured on it. I’ve completed hundreds of nutrition assessments and care plans for kids with autism, from all over the US and in other countries. And guess what: I have never met a child on the spectrum free of a nutrition concern. In most cases, nobody on the child’s care team had ever looked for these problems. But when we found them, and fixed them, these children’s lives began to improve dramatically.
This happens all the time. Why? Because your neurologist, speech therapist, pediatrician, occupational therapist, and neuropsychologist aren’t nutritionists. It’s not their job to do this assessment, and they aren’t trained or expected to do it. But it’s well known that autism and nutrition is a thing. It’s just not their thing.
In most cases, nobody on the child’s care team had ever looked for these problems.
Common nutrition problems for children with autism go beyond low status for zinc or iron, eating narrow diets, missing out on varied proteins, lacking brain-critical fats or oils, or having tantrums that exhaust you at mealtimes. Kids on the spectrum do often have those problems, and solving them will improve behavior and functioning.
The Autism-Nutrition Puzzle Is Deep And Varied, And You Deserve Professional Guidance… There’s much more to the nutrition puzzle, and new research on this is emerging all the time. More often than typically developing kids, kids with autism also have problems with digestion, constipation, diarrhea, stomach pain, gas, or just plain eating. Besides eating poor diets more often that can leave them malnourished, they may lose a lot of nutrition because of diarrhea, chronic loose stools, or gut microbes that steal nutrients before they are absorbed. Gut microbes can even alter the pH of your child’s digestive tract enough to make absorbing certain nutrients difficult – further impeding how nutrients like iron or zinc get to the brain. Both are critical for attention and focus!
Solutions for these problems depend on thorough nutrition assessment. This defines the baseline, and makes plain what food or nutrition piece to tackle first. Professional nutrition assessment has many pieces, including lab work, nutrition focused physical exam, food diaries, and history. Lab tests alone are not enough for pediatric nutrition assessment.
Pivotal for a child with autism is assessing and correcting the gut biome. This is doable, and results can be remarkable – for behavior, appetite, picky eating resolution, and fixing constipation once and for all. The gut biome plays a role in brain development according to several studies (here’s just one), and gut bacteria contributes directly to autism-like behaviors, according to mounting research. Optimize this piece of your child’s autism puzzle, and you are likely to see remarkable changes. Get guidance – just tinkering with probiotics is not likely to have a therapeutic benefit.
In my practice, I assess gut biome with stool culture that includes fungal species, beneficial flora, disruptive opportunistic bacteria, and pathogen bacteria. I also use PCR DNA stool studies – a more sensitive method than culture – to find parasites, protozoans, viruses, and more. Learn more here about why basic pathogen stool culture or antigen studies may not do enough to solve this piece of the puzzle for your child with autism.
Special Diets Are Not Unsafe… What about special diets for autism? I never recommend any diet without a rationale made clear to me from labs, symptoms, history, and clinical signs. Whatever diet your child eats, it should be tailored to your child, through individualized assessment and care. Your child is worth it. Don’t jump on a dogma bandwagon – get clinical facts that describe your child’s situation. I have witnessed tremendous turn-arounds in children with autism whom I placed on restricted diets. Monitoring is the key, as is replacing what you remove with equal or even better food.
Contrary to the story you may have heard that elimination diets are risky, I have never found this to be true. I instead see that these children become healthier, happier, and end up with a broader palate overall, thus getting more nutrition and food, and growing better, sleeping better, learning better, and settling down into their true selves. What is risky is leaving a child in picky eater mode, unable to eat more than a few foods, or waiting years until all other interventions fail before providing good nutrition care. You will have missed opportunities for brain development that only happen in time sensitive windows at younger ages.
I have also not found that children suffer socially when using dietary restrictions typical with an autism diagnosis. Instead I routinely witness that because behavior and social skills rapidly improve with the right nutrition support, children with autism become more socially engaged, make more friends, and get more access to social landscapes as a result. Kids tend to choose to be with their new best friends, rather than their old favorite food.
New autism diagnosis? Put nutrition first. It’s just the tippy top of the iceberg of potential! All those other services you’re looking at right now, and wondering how to pay for, work far better when paired with the right nutrition platform. Your child will get more mileage out of each intervention, whichever one you choose. In fact, you may even find you need fewer services or less intensive services, once nutrition support is engaged. I have witnessed many instances of children graduating sooner that expected out of Applied Behavior Analysis, feeding clinics, or social skill groups because of a nutrition piece.
Get Autism Nutrition Help Now! Not sure where to start? Here are two of my books on autism and nutrition here and here. Contact me for one on one nutrition consultation if you’re ready to dive in with support.
Functional medicine is all about resolving the root cause for chronic conditions, by giving the body tools to repair and heal itself beyond just prescription drugs to mask symptoms. The idea is to be well to potential, not just un-sick. But there’s a problem, when it comes to babies, toddlers, kids and teens: Those people are not little adults. The functional medicine model that works for grown ups sometimes leaves out critical pieces for kids – and I see these mistakes in my pediatric nutrition practice, regularly!
If you know me, you know I work in an office with a fabulous functional medicine doc, author, and speaker Jill Carnahan MD. Before moving into our new office digs in 2015, we shared space with Robert Rountree MD, another renown educator, author, speaker and founding IFM member (here’s just one of his fabulous pearls of wisdom). Just being in the same room with those two is a joy, as both are fonts of knowledge and experience!
I meet many kids who have come into my practice having already worked with a functional medicine practitioner elsewhere in the US – but often, these kids are still sick, not getting better, or even getting worse. Does this mean functional medicine doesn’t work for kids?
Nope. It means a few key pieces got left out. I see this a lot. Work these bits into your child’s care with your provider, and things might go a lot better. Here’s the top 3 goofs that I encounter, when working with families who tried functional medicine care for a child, but didn’t see great results.
1 – Your Doctor Forgot About The Food
Sounds crazy, but it’s true: The most important piece for children of any age to feel better with a chronic condition (or even leave it behind) is food. How much? What protein sources are safe? How much fat? What carbs are okay? What do you make for dinner? What goes in the lunch box? How many ounces of formula, and what formula is best for the baby? How much breast milk? Should mom be on an elimination diet too? Which foods should she remove, which foods can she replace those with? Should your child eat fermented food, GAPS, ketogenic diet, Autoimmune Paleo (AIP), gluten, low oxalate foods, avoid nightshades, low FODMAPs foods?
All those questions need specific answers and specific instructions.
But… What I often see is that parents are just told what not to feed their kids, without details about what to feed them instead. This often leaves kids over-restricted, not eating enough. I also find that foods are eliminated without a good reason (“aren’t carbs bad for you?” … “I was told potatoes are inflammatory, so we cut those too.” … “I don’t want to feed yeast – the doctor said to go ketogenic just to be safe.”) Or, sometimes, a food that is not a fit gets over-used, like daily high oxalate juices with spinach, kale, and beet juice; or coconut everything, when we find coconut to be a high IgG trigger food or too high FODMAPs for that child. Long short, you really gotta know what food is right for your child, and how much. That is based on lab studies, signs, symptoms, and history – not on any dogma about the “best” diet.
The flip side of looking in detail at what and how much your child is eating daily is growth pattern. Growth is the single most important measure of a child’s nutrition status, especially in children under age five. It can be assessed in great detail, to include stuff like Z scores for body mass index for age, velocity, regression, or level of malnutrition. This is a big blind spot in the functional medicine model, which was borne out of how to manage chronic conditions for adults – who aren’t growing!
Growing dramatically changes how we use energy (calories), protein, fats, carbs, and even some micronutrients like folic acid, zinc, or iron. Just your kid’s brain uses more energy per ounce daily than yours does! Not to mention all the other stuff going on in a growing person.
I request a food diary with each new patient intake, and often at follow up appointments too. This isn’t about watching what parents are doing right or wrong (it’s not about you!). Food diaries reveal a lot about a child’s body, what they feel like eating, what they are absorbing well, what nutrients they may be losing, why they are fatigued or hyper, or what sort of dysbiosis may be active.
Matching this info up with a growth analysis is a gold mine of information about why a child isn’t feeling well. Growth impairments can be subtle or even invisible, without a skilled assessment (which pediatricians generally don’t do either – they don’t have time). Even mild growth impairments matter – they are costly for children. They affect sleep, behavior, mood, self regulation, timing of puberty, and stamina.
And.. Guess what: That Holy Grail of healing leaky gut? It can’t and doesn’t happen when a child has a growth impairment. Just being even a little underweight can, in itself, make a child’s gut leaky. The functional medicine community often overlooks this. You can eat all the kombucha and bone broth you like, but if you’re five years old and off your expected growth pattern, it won’t work so well. There won’t be enough energy and construction material to manage the demands for growth, and the demands of tissue repair and restoration. These heighten a child’s macronutrient needs (protein, calories, fats, and carbs) dramatically – and they have to be the right macronutrients for your child… Or, you guessed it, all your efforts can flop.
I often find that a child will be sprinkled with supplements for toxicity and neurotransmitter support, when all they needed to function better was the right food in the right amounts, consistently, day to day. The only way to find this out is by looking at detailed food diaries and making a deep dive into growth data – including life long growth pattern from birth. This helps identify what the expected growth pattern is in the present day.
2 – Your Doctor Ran Too Many Fancy Lab Tests
…that didn’t really add up to an action plan for the family.
There’s no shortage of super interesting lab tests available now, that broaden our understanding of how the immune system is managing food, how we manage toxic exposures, or what our microbiome is up to. But what do you do with it all?
Sometimes this information isn’t actionable. That is, there isn’t going to be anything you can do with it.
For example: A Cyrex Panel 3 for Wheat Proteome Reactivity and Autoimmunity is as detailed as you can get, to see what an immune system “thinks” about gluten. It costs about $300, out of pocket. But if you’re just trying to figure out if a gluten free diet would help, all you need to establish that is deamidated gliadin antibody test. Your pediatrician or PCP can do that, and bill your insurance. (Your pediatrician will tell you it’s “normal” if the result is less than 20. But I will tell you to withdraw gluten if your child has any suspect symptoms for gluten intolerance, with a value above 10). Even if you pay cash for this simple test, it isn’t likely to cost more than about $50.
Or you might see a test for red blood cell toxic and essential metals, like this one. I like this test because it captures a lot of information in one sample. But, in children especially, iron needs more detailed digging than this test can show. If iron is marginal, it’s easier to absorb toxic metals like lead. The only way to know if iron is truly marginal is to do some standard stuff that, once again, your pediatrician can do very inexpensively or on your insurance. Include ferritin, CBC, transferrin, saturation, and serum iron to get this picture. Plus, kids show signs of mineral deficits clearly in behavior, sleep pattern, mood, hair, or skin. For children, a nutrition focused physical exam should be included in assessment too, not just lab tests. And by the way, here in my practice and in the practice of Jill Carnahan, we don’t use hair testing for mineral analysis, because we don’t find it to be terribly accurate or useful.
Another popular (and costly) test is the NutrEval by Genova Diagnostics, which runs close to $400 out of pocket. Some insurances may cover this test; in my own practice, this is rare. Many functional medicine docs rely on this for nutrition assessment. While it does do several tests for one fairly decent price, it does not assess children as well as it does adults. Nutrition assessment in children must include growth and food intake data, as well as clinical signs and symptoms. No one lab test can do this, even a comprehensive panel like the NutrEval. Because it is sold as a comprehensive, complete tool, it tends to mislead into thinking that all solutions lie in the supplement protocols that come with your test results. How often I have seen this fail!
The NutrEval also includes an analysis of essential fatty acids. I think you can skip that: It’s easy to see things like essential fatty acid deficits in kids, based on their food records (are they eating any?), behavior, and clinical signs that relate to essential fats. You don’t really need a blood test for this in my opinion, unless you are revisiting how to dose a fatty acid supplement protocol that doesn’t seem to be working. Even then, you can check other parameters in signs, symptoms, or other less costly labs to find out.
Another common misunderstanding I encounter with parents who have done a NutrEval is they believe that their kids’ protein status has been assessed, because there is an amino acid profile in it. Amino acid profiles don’t assess protein status or intake, which is crucial for kids. The amino acid profile rules out inherited metabolic disorders, another common and often insurance-covered test that you don’t need a functional medicine doctor to order for you. Protein status in kids is assessed with a metabolic panel (a common and cheap LabCorp or QuestLab test that your pediatrician can do), and by looking at clinical signs, growth, feeding, and elimination patterns.
For more cost saving tips on what lab tests to start with, without spending thousands out of pocket with a functional medicine doc, see my e book on 5 Essential Lab Tests For Kids With Autism. Goes for any kid, with a chronic condition! Any practitioner skilled in Nutrition Focused Physical Exam for children can save you a lot of time, trouble, and money – and help you avoid a care plan that backfires.
3 – Your Child Has Been Over-Treated, or Treated Too Aggressively
There are so many cool tricks and tools for wellness potential that insurance doesn’t pay for. These are the things that your functional medicine doctor is trained to use – cutting edge stuff that includes everything from far infrared saunas and nutritional or immunoglobulin IVs, to highly specialized supplement protocols and ozone suppositories, or novel ways of using prescription drugs off label, for special circumstances. It’s hard to hold back, when we want to help people heal!
But here’s the thing: Children are delicate little creatures. Especially really young ones, like, babies. Or kids of any age who have been overwhelmed with mold toxicity or Lyme disease, or who didn’t tolerate the vaccine schedule. Their bodies are overwhelmed. Don’t overwhelm them all over again, with a barrage of treatments, all at once.
I have seen children go from bed-ridden to literally jumping, enjoying school, and playing normally again simply by suggesting a family stop treating their child for all these found problems, and by helping to re-boot with nourishing, gentle foods that fit that child’s needs. Then we pick and choose which “layer” the child might successfully address first. Are they anemic, or are there other mineral imbalances? Can they absorb foods and nutrients in the first place, or is there achlohydra, SIBO, SIFO? Are they pooping comfortably? Can they detoxify ….anything? Where can we gently support some detox?
When children are over-treated, they get sick, tired, weak, anxious, fatigued, depressed; they don’t eat right; they can’t play, they’re weepy or more angry, with volatility; they have rashes, fevers, or get every cold and bug more easily. It’s not necessary to go through this. It can be easier, gentler, and work better.
Functional medicine is the way health care is trending. We all want to feel really good, not just live “meh”, without sickness. Kids deserve it too. If your child is not playing, sleeping well, eating well, and enjoying activities they love, take a look at whether these mistakes are in the mix with your functional medicine provider. Re-boot the plan, and your child can feel better.
Let me tell you the five most helpful to-do’s I have seen parents use for their children’s health, as we start a new year.
These come from my twenty years’ experience working with families in my pediatric nutrition practice – with mostly complex, difficult cases who couldn’t find improvement elsewhere. In other words, even if your child is really challenged with feeding, growth, chronic illness or disability, developmental trials, allergy or more, I can tell you that these five tips are still my top picks, for setting up the healthiest foundation possible for your kids.
You might think I am going to talk about stuff like picky eating, junk food versus organic, gluten, food allergies, eating more vegetables, probiotics, vitamins, the latest autism protocol, whether or not you should do GAPS, gut biome… Nope. I definitely do cover all that and more in my clinical practice and in my blog, so have a look around.
These tips are about you – and how subtle shifts in your approach to health and what your family eats can cause unexpected benefits to unfold in everyone’s health.
1 – Get fierce about this: Adopt the mantra that health – not illness, disability, endless doctors’ appointments, or dependence on prescription or over-the-counter drugs that bring unwanted side effects – is your child’s birthright. It’s the baseline they are entitled to. Picture them at their healthiest and happiest. Imagine the unimaginable, if that is what it takes. Start with that picture of the joy good health brings.
If they’re not there, if your children are saddled with chronic illness, don’t lament, and definitely don’t feel sorry for them – they have you as their advocate and model, and they need positivity and possibility. Hold that image of total health that they need and deserve. Assume they have it already, and lead the way toward it, quietly and persistently. Expect a good outcome. Their bodies are built to grow, heal, and restore. There is always potential for healing.
2 – Chill out about food. Robyn Obrien’s 80/20 rule is a comfortable sweet spot. Her suggestion is to work for “progress not perfection”. Unless you know your child will sustain severe injury or consequences from eating certain verboten foods which must be avoided, don’t pathologize food. Don’t judge. Don’t chatter about how horrible this or that food is.
I encourage parents to use empowering language, even with small children. I discourage labeling food as “bad” or something that will “make you sick”. This can burden children – even teens – with unnecessary anxiety.
Instead, use words that show the power to choose. If your child eats something that backfires into discomfort or behavioral disintegration, ask which food might feel better next time, if they’re old enough to consider that question for themselves. If not, tell them what you will do next time: “Next time I’ll have xyz ready to eat instead, and you can see if that feels good”. Or “I’ll give your teacher a new snack for you at school. Maybe that will feel good instead.” Don’t harp on what a mistake a transgression was, especially if your child made the choice or if the choice was beyond their control. That is too easily internalized into feelings of powerlessness or failure by a child.
Notice your phrasing, demeanor, and tone when talking about food and health. Leave out the dark, judgmental stuff and emphasize food feeling good, tasting good, or being fun to share or experiment with.
3 – Read food labels? Now try this. If you’re like most parents I work with, you read food labels ad nauseam. You scrutinize every ingredient that passes your child’s lips – especially if you faithfully eat only organic food, avoid corn syrup or dyes, or if your kids ever needed an Epi Pen for eating the wrong thing!
Great. Now try this: Read a vaccine package insert. Read the whole thing, including the ingredients (often listed under the word “Description”). If you care about what’s in your child’s food, you will definitely want to know what is injected into them.
This is a great resource to see the full insert for each vaccine in the schedule. To see ingredients, search for the word “description” (which – as you may wonder – does not necessarily disclose all the ingredients, some of which are allowed to be proprietary, per the FDA).
I’ve met many a mom worried about letting their kids eat, say, corn chips or dairy (because they heard either was “bad” for everyone) – but never knew that Prevnar 13 – just one of dozens of shots on the schedule – has GMO soy fragments in it. Or that Recombivax has yeast, soy, formaldehyde, dextrose, and aluminum in it.
Recombivax is given to newborn babies. If you wouldn’t let even traces of GMO soy, formaldehyde, or aluminum touch your newborn baby’s tongue, why would you let these be injected? Note that eating any protein – or toxin for that matter – is far safer than injecting it, especially if your child is prone to any sort of reaction.
No need to dwell on what a contentious conversation anything with the V-word is, or indulge the drama and emotional reactions to this topic (I’ll delete comments that do). I get it. My graduate training in public health was full-on pro vaccine. I don’t need any instruction here, thank you very much.
It’s just that it’s high time for common sense. We talk a lot about food ingredients, including traces of glyphosate in GMO foods. Nobody talks much about ingredients in your kids’ shots. The “trace amount” argument loses traction once you see that kids receive anywhere from 70 to 100 doses in their first five years, when they are the most vulnerable to the burden of toxic exposures.
It would be fabulous if there was a pharmaceutical or biological product that actually was reliably, equally safe and equally effective for every kid or baby, every single day. But that is just magical thinking. There is no such thing, anywhere. Not a food, not a medicine, not even a fragrance. Can you imagine if it were mandated that all public school children eat Adderall every day, because some kids are too hard to manage in the classroom due to ADHD?
So this is why my Number 3 is for you to learn exactly what’s in your kids’ shots (or yours, if you’re planning on getting pregnant). They are potent. Don’t take them lightly. They may be helpful, or like anything else, they can be harmful. Too many may overstimulate the immune system to cause problems later on. Learn what is in vaccines, when they’re given and how often, and scrutinize if your child really needs them all.
For example: Your child won’t need boosters if they retain immunity from a prior dose – more may not be better.
If you’re upset because someone gave your kid a bag of Skittles at school, then wig out about the kid next door who skipped chickenpox vaccine, I think you’ve got it backwards. Just my opinion.
Besides, don’t you believe your own kid’s chickenpox shot worked – ?
In this scenario, the candy may be the lesser of two evils. Chickenpox vaccine is made with human fetal DNA, guinea pig embryonic tissue, sucrose, glutamate and MSG, and fetal bovine serum. Check out page 6 under “Description”.
4 – Heed your intuition. It’s a powerful healer, guide, and protector for your kids. And at the same time, remember that intuition is not a mandate for you alone to know everything!
In all my years as a clinician, I can’t tell you how many times I’ve heard a mom say “I just had a feeling” …and how often that feeling was right. I’ve certainly had that moment many times myself as a mom.
It can be tough to go against the advice of the expert specialist at the Mayo Clinic, but you can do it if you simply feel you must, even if you don’t know quite why just yet. You know your child best.
Don’t confuse intuition with fear, or with the egocentric idea that only you can help your child. While I’ve often seen a mom’s intuition impressively steer a child to a good outcome, I have also seen families withhold good care options or block alliances with good providers, out of fear that they shouldn’t trust anything, or a belief that only mom can know what to do. Neither approach is very successful.
Look for your allies and resources, know your own strengths as well as spots where you could use help, allow the help in, and remember – you do know your child best.
5 – Drop the drama. When we have kids with struggles, it’s so easy to be seduced by the drama of what it takes to be their parent.
It’s easy to over-identify with the tasks of caring for kids with learning disabilities, developmental concerns, feeding and growth delays, allergies, and more.
Don’t do that. It messes up your kids. They’re not here to fulfill you in some way, or address your needs. They’re just here. Pretty much, to be themselves.
I meet traumatized families. Families who have had too many trips to the ER for severe allergy reactions from an accidental walnut, for seizures because a medication keeps failing, for passing out because of FPIES reactions and non-stop vomiting (a broken arm sounds pretty good for these families). Families isolated by too many dietary restrictions, by developmental disabilities including autism, anxiety disorders, or processing disorders.
I meet families who have been verbally battered or treated with great insensitivity by doctors, teachers, neighbors, or even friends or family members. Trusting becomes hard. As a parent, it’s hard at times not to feel victimized, to feel like the hardship with your kids may never end, and to lapse into the trap of believing that this whirlwind of medical/developmental/educational crises is… your whole and sole self.
But this isn’t about you.
Underneath and in between all that, there is your child, endeavoring to just be. Like any other kid.
The kids who come out of these tempests with the best outcomes, in my experience, are the ones whose parents can remain aware of this. They do not attach their own pain, ego, fears, sadness, disappointment, frustration, or feelings of inadequacy as a parent to the child, or to the outcomes. They don’t focus on diagnostic labels, whether it’s eosinophilic esophagitis, PANDAS, autism, Crohns, FPIES, or whatever. They rarely if ever use the labels around their kids, because they know their kids are not the labels. They obtain the labels as a path to health and wellbeing as is useful – that’s it. They don’t spend too much time on Facebook groups devoted to their kids’ labels. They focus on actionable solutions. They trust the fact that as parent, they are doing the best they can.
You’re in charge. You set the tone. Your kids will follow suit, even if they have seemingly insurmountable challenges on their plates. I used to hate it when my mother advised, “don’t complain, don’t explain” …but, she was right.
Everyone has heard about probiotics – but how do you know which are friendly and helpful, and which are UN-friendly and detrimental? Not all probiotics are all friendly, all the time. The microbes in probiotics vary in the sorts of tasks they do for us – so, depending on when, what, and how you’re using them, they can be a big help or a big fail.
Probiotics are bacteria or yeast supplements, in case you missed the memo, that you can buy and eat as a supplement. There are powders, capsules, chewables, probiotic foods and drinks… you name it, it’s out there. The idea is to help populate your intestine with the types of bacteria that keep you healthy. Turns out we really need bacteria, viral exposures, and even some fungal (yeast) species to co-exist with us. These help our immune systems stay robust and direct traffic – especially at the gut wall lining, where our insides meet the outside world.
What’s in a human gut biome, and what species of microbes do what, is a burgoening area of study in medicine and health. While the old paradigm believed in a kill-all-germs and take-no-prisoners approach to immune health, the new paradigm has noticed that this doesn’t really work – because it makes people have more allergy, more inflammatory conditions, more autoimmune problems, and possibly, more susceptibility to serious conditions later in life, like cancer. A great example of this is how exposure to infections like measles and chickenpox in childhood protect us later on from certain cancers or shingles. But, now that we so enthusiastically use antibiotics, vaccines, and cleansers to keep germs at bay, we’ve really altered our human immune-scape!
Enter probiotics. Using these really can help many conditions, symptoms, and problems – from asthma and allergies to colitis or obesity.
But what if you use them and your child feels worse?
You may be using the wrong probiotic at the wrong time for the job.
One of the most-often misused strains I encounter in my pediatric nutrition practice is Saccharomyces boulardii. “Sacc B” for short, this is actually a strain of yeast (not bacteria) that has shown some action against tough infections like Clostridia difficile (“C diff”), which has become antibiotic-resistant. C diff has become so resistant to antibiotics that the FDA even approved use of fecal transplants to fight it, so any tools to fight it are worth exploring. Sacc B has been shown to reduce symptoms of irritable bowel, inflammatory bowel, and even Candida infection. Sounds great, right?
But it can make your child feel sick and may trigger symptoms like diarrhea, nausea, bloating, picky appetite or rashes if you use it for too long (more than a month). If your child has antibody reactions to Candida or other Saccharomyces species, then using Sacc B may fail – because the body may attack the Sacc B with an immune response. Cross reaction can occur here, as Candida and Saccharomyces – though they are different species and strains – are all in the fungal family. And that can make Sacc B backfire for your child.
Solution? Withdraw the Sacc B if your child is feeling worse on it; or, don’t use it at all until you screen for antibodies (IgG/M/A) to Saccharomcyes cerevisaie and Candida species. You can also run a stool test for microbiology of these species, which should not be found in excess on your child’s sample.
If you use Sacc B, use it in short bursts, say 3 weeks at a time. Look for improvement then rotate off the Sacc B to mixed Lactobacillus and Bifido strain product, or a spore probiotic with Bacillus species. If no improvement, get professional guidance.
Another frequent fail in supplementing probiotics is using them when your child has small intestine bacterial overgrowth (SIBO) or small intestine fungal overgrowth (SIFO). Symptoms of SIBO and SIFO are similar to symptoms of other GI problems – which leads many parents to give probiotics a try. But, these can make SIBO or SIFO symptoms worse, and fast. A healthy small intestine (which is the first part of the intestine after the stomach) contains a lot fewer bacteria and microbes than the large intestine or colon (further down the pipe). Too much microbial action in the upper part feels awful. This is why kids with SIBO or SIFO often don’t like eating, are very picky, struggle with the slightest variations in food textures, or are even averse to feeding themselves. They may claim to be full when they’ve eaten very little. Add some multistrain probiotics, and this can make it all feel worse.
Solution: If your child is old enough to tolerate a SIBO breath test, you may wish to do this – but, I generally don’t use this test, because it is a tough test for a child to endure, especially if they do have SIBO! Your GI doctor may offer it, and you can ask about how to get your child through the test. If positive, you will need to address this before advancing a probiotic regimen. SIBO and SIFO can be helped with herbal supports and may not necessarily need antibiotic treatment. Once you do eradicate the SIBO or SIFO, single strain products at lower potencies can be helpful, such as Lactobacillus rhamnosus or reuteri at 20 billion CFU per day or less.
Now and then I’ll encounter a child who is downright over-dosed on probiotics by a well meaning parent. Many of us have felt enthusiastic about fermented foods like kombucha, sauerkraut, or kimchee, but overdoing it can create symptoms you’re trying to correct, like gas, bloating, pain, or food refusal. If you’re using these daily for your kids but they aren’t thriving with comfortable appetites and eliminations, revisit this strategy. I like to use a GI MAP PCR DNA stool screen as well as a stool microbiology test to look at what is going on. Sometimes a less aggressive strategy is better, and you can start by simply withdrawing fermented foods or probiotic supplements for a week or so, then resume at smaller doses. You may find your child simply doesn’t need so much probiotic supplementation, from any source.
Lastly, don’t confuse probiotics with pre-biotics. Pre-biotics are starches that friendly bacteria can ferment for us. Some kids (especially with FPIES) don’t tolerate pre-biotic supplements very well, because they may be high in FODMAPs. If you’ve chosen a product that has ingredients like inulin, chicory, galactic-oligosaccharides, cellulose, or maltodextrin, or if the label says “prebiotics”, take note – this may not be the one for your child. You can buy probiotics that omit these ingredients from brands like GutPro or Custom Probiotics.
The choices are dizzying in the world of probiotics, but the good news is there is probably a product that can help your child with appetite, eliminations, and more. If you’d like help, work with me to look deeper into what your child’s solutions might be.
Can you make an infant formula out of camel milk? I’m often asked to find substitutes when commercial formula fails or when even breast milk is triggering a baby’s FPIES, allergy, or eczema. There are many good formula options from cow or goat milks on the market – but some babies still struggle, and need yet another option.
Camel milk has many health benefits – some of which I outline in my post on it here.
And yes, you can make an infant formula using it – as long as you know a few caveats up front. Most of all, you can’t use camel milk in its original form as it comes from the camel. It must be modified first.
Camel milk is not the same as human milk, or milk from any other mammal like sheep, cows, or goats. It has to be modified to be safe as an infant formula. Babies have very specific and very different needs than toddlers, children or adults when it comes to food and nutrition. If you miss the mark, your baby can pay the price with irreversible deficits in development or growth.
Camel milk has about half the fat of milks from cows or goats, and less than half the fat of your breast milk, especially early milk or colostrum. Babies need a lot of fat. It’s essential for all sorts of things, including brain growth, and for carrying critical path nutrients like vitamins A, D, E and K into tissues.
Camel milk also has more than twice as much protein than human breast milk – which might sound great at first. But human babies don’t need all this concentrated protein, and it can actually be harsh for their kidney tissue to eat too much of it too soon.
Lastly, camel milk has less carbohydrate in it that our own milk does. And babies need a lot of carbs too, because carbs become a primary fuel soon after birth – so protein and fats can do their own crucial jobs of building tissue, hormones, and carrying nutrients for us.
Less fat and less carb means camel milk has a lot fewer calories in it than human milk.
These macronutrient ratios – that is, the amounts of protein, carbs, fats, and calories in camel milk versus human milk – make it unsuitable as an infant formula on its own. Giving just camel milk in its original state will cause malnutrition in your baby (as will giving just milk from coconut, any nut milks, or any plant based milk substitutes).
So what to do? One popular recipe suggests adding cream (from cow’s milk), whey, lactose (that’s the carbohydrate), plus some oils and nutritional yeast to round it up to par for your baby. That’s a great recipe – for kids I’ve never met! If your baby can tolerate all the ingredients in that recipe, most likely, he or she can likely handle breast milk well too, or any of the European or American commercially available organic infant formulas that are made from goat milk.
You can use that camel milk recipe if you don’t mind mixing up your own and don’t like the organic commercial choices, or if your own milk has petered out and no donor milk is available. In that scenario, camel milk as mixed in the recipe above is a great option, and you can expect your baby to thrive with it. If you see funky stools, rashes, or crying, screaming, gas, bloating, or vomiting, then it isn’t a great option.
Not to despair! Even super sensitive babies can try a camel milk formula. It may even be a bonus for them as the immunoglobulins (immune proteins) in camel milk are legend for fighting enteroviruses and protecting immunity.
I work in that plan B zone. The babies I meet in my pediatric nutrition practice usually have severe feeding concerns, and/or are already in a growth regression or even growth failure. They can’t tolerate nutritional yeast because they already have fungal overgrowth in GI tract or an antibody reaction to it. For many of them, even this “healthy” yeast supplement triggers discomfort and pain. They can’t use cream because cream has some casein and whey in it from the cow’s milk it is made from, and they may be allergic or intolerant to those. They can’t use some of the oils in the recipe either because these may trigger their FPIES symptoms, which are terrifying – especially when a baby is vomiting violently until they pass out.
To use camel milk infant formula in these cases, you need to add about 6 grams of carbohydrate and 7 grams of fat for every 8 ounces of formula, while reducing the protein and mineral load. You also may need to remove the whole food sources of B vitamins and iron in the Healthy Home Econonmist’s recipe above, since kids with FPIES don’t do well with many whole foods until their gut/immune interface is improved.
That’s why in the recipe below, for B vitamins, I suggest using a commercially available multi vitamin supplement with iron. The brand chosen below has the least amount of flavors, whole food extracts (which can be poorly tolerated for sensitive babies), or other additives common in children’s liquid supplements. Sometimes, you have to pick your battles. For FPIES or highly allergic babies, it’s not worth the risk of using a whole food option like liver or nutritional yeast. These may be well tolerated later on. Either way, don’t omit the B vitamins, folate, and iron. Your baby needs these and camel milk doesn’t have enough of them.
For 12 (twelve) ounces of a camel milk infant formula that can be tried for sensitive babies or babies with FPIES:
- 8 ounces whole camel milk (available shipped frozen from Desert Farms – request raw if available, flash pasteurized if not)
- 4 ounces purified filtered water
- 2 heaping teaspoons lactose powder
- 1 teaspoon melted grass fed goat ghee or cow’s milk ghee (use goat source for more sensitive babies)
- 1/4 teaspoon (20 drops) DHA fish oil
- 1 teaspoon any tolerated organic oils (olive oil, non GMO sunflower oil)
- 1/4 teaspoon MCT oil
- ~5 drops multivitamin for babies with iron (here’s an example) – don’t exceed 40 drops per day total
Warm camel milk and water gently in a stainless steel pot on low heat. Stir in lactose powder til dissolved. Add ghee, vegetable oils, and MCT oil but not DHA fish oil (heat quickly denatures this oil and makes it taste bad). Stir to melt/blend then transfer to a glass blender and blend on low speed for about 20 seconds. Add vitamin drops and DHA fish oil, and pulse to blend on low speed. If you’d like to add a probiotic, it can be added with vitamin and DHA, but not on stove top (heat kills the bacteria in the probiotic). Transfer to bottles to feed at wrist (warm) temperature.
A formula is a go when your baby can settle comfortably after feeding. Reflux can also often be resolved with the right formula, instead of depending on medicines like Prilosec or Nexium, which reduce your baby’s digestion and ability to absorb things like iron, zinc and B vitamins. If camel milk, goat milk, or products like Alimentum RTF or Nutramigen fail, your baby may feel better with an elemental (amino acid based) formula. I’m happy to work with you to help you do that – make an appointment to get started any time.
Healing leaky gut is one of the most requested tasks in my pediatric nutrition practice. Many parents are surprised to hear me say that it is possible to repair leaky gut in children of all ages.
But what really works? There is a lot of buzz about dietary approaches, probiotics, and supplements, and less good research on leaky gut than we’d like, especially when it comes to infants, toddlers, kids, or teens. However, after twenty years in my clinical pediatric nutrition practice, I can tell you what nutrition supports I’ve seen consistently work, and what strategies often fail.
First, let’s get on the same page about what leaky gut is, and isn’t. It doesn’t mean there are actual ulcers or holes in your child’s intestine that are “leaking”. But it can mean that the intestinal wall has lost some integrity – and has become too permissive about the size of molecules that it lets pass into your bloodstream.
Another way you might hear leaky gut described is “intestinal permeability” or “hyper-permeability” – again, expressing a condition in which the intestine’s normally very selective, tight process for digesting and absorbing food has become, well, loose and sketchy!
Practitioners – myself included – might scrutinize zonulin, stool microbe studies (microbiology culture or PCR DNA methods), inflammatory markers like calprotectin, or immune markers like immunoglobulin A in a stool sample to gauge gut environment. Some doctors may order a lactulose-mannose test in which patients drink a concentrated solution made of those sugars. How these two sugars, which are different sizes, are excreted in urine can give a measure of how permeable the gut is. For more on intestinal permeability tests and their pros and cons, click here. Food allergy and non-IgE food reactions may also be measured, which requires a blood test.
Key To Restoring Leaky Gut Is….
Key to restoring a healthy gut is repairing “tight junctions” – these are the microscopic, traffic-cop structures of your gut. They form a tight seal between cells in the intestinal wall. When these junctions are injured, they break down – and larger-than-ideal molecules cross from the intestine into the bloodstream, triggering all sorts of reactions to stuff that your bloodstream and distant tissues were never meant to see in the first place. These might be anything from polypeptides (over-size fragments of food protein molecules that can masquerade as false hormones, false neurotransmitters, or invading antigens) to toxins, getting access your body from your gut, when they’re not supposed to. This permeability scenario is a catch-22, in that it can easily perpetuate itself, as more injury persists in the gut.
The intestine is our largest immune system interface with the world outside the body – so leaky gut can also wreak immune havoc, from autoimmune problems to frequent infections and illnesses.
What injures the gut? Lotsa stuff – and, making this harder is that leaky gut symptoms are often diffuse and insidious. They can evolve gradually, or with an abrupt onset that never quite resolves. Leaky gut can trigger symptoms in the GI tract of course, but also far from the gut, like headaches or joint aches, stiffness, pain, fatigue, or frequent colds and infections.
image courtesy Jill Carnahan MD
Here Are Usual Suspects for Triggering Leaky Gut
- antibiotic use
- intestinal Candida or other fungal species infections
- undiagnosed food allergy or food sensitivity
- intestinal flu or virus
- food poisoning
- non celiac gluten sensitivity
- poorly tolerated routine vaccinations
- chronic stress
- traumatic brain injury or concussion
- C section birth (baby misses exposure to helpful vaginal flora)
- mom treated with antibiotics in pregnancy or at delivery for any reason
- mastitis (mom needs antibiotics while breastfeeding)
- radiation therapy
- being underweight especially if you’re a baby, child, or teen
Most kids have had at least one of the items on this list. But that last one is key. In itself, underweight can cause intestinal permeability especially in children. You can address all the other triggers, but if your child is underweight – that is, more than fifteen percentile points off his or her expected pattern – your child’s gut can remain “leaky”. There simply isn’t enough raw material and energy on board for that tissue to repair itself, while your child is also trying to grow.
Here’s the rub: Generally, nobody scrutinizes your child’s growth pattern that closely (I will be honest and tell you that I even see gastroenterology work ups overlook this level of detail – and I routinely read my patients’ reports from their GI specialists nationwide). Without defining your child’s actual expected growth pattern – that is, where your child should be today given parental stature, pregnancy history, birth/delivery history, and growth history since birth – then you don’t know if your child is underweight or undernourished. You can learn more about that here.
I meet many children who are underweight. Sometimes it’s caused by families placing kids on diets that are too restrictive. Or some families have become so traumatized by frightening reactions to foods that they just don’t know how or what to feed their children – so, they don’t. Sometimes it’s caused by a well meaning practitioner who didn’t monitor growth and food intake, because they’re focused on lab tests and supplements instead, gave no guidance on what to actually eat, and encouraged a restrictive diet without effective replacements for foods taken out. I have also seen underweight caused by reflux medicines, which can diminish appetite and digestion when used for more than a few weeks or months. When it comes to picky eating, this too will drive growth status down in kids, injuring the gut too via underweight and poor diet.
The flip side of this coin is assessing what your child eats – how much and what – and the only way to discover if your child eats enough non-triggering, nourishing food is to assess a food diary (part of every new patient intake I do), and then align it with the growth assessment. The food your child eats is the lumber that will be used to do the gut repair – so it has to be the right stuff, in the right amount. Supplements (including glutamine, which is a helpful amino acid but not an energy source), herbs, and probiotics don’t provide this raw building material. I meet a lot of kids who have been given a lot of supplements, lab tests, antifungals, special diets, and measures to repair leaky gut. But they’re still struggling – because this essential growth and feeding part gets lost in the shuffle. But put the right feeding plan with the right supplemental supports, and boom – now you’re talking!
Here’s What Works to Repair Leaky Gut In Kids
- Balance gut microbe environment with herbal or prescription agents to directly address fungal burden, Clostridia burden (even commensal strains can be problematic if they far outnumber other helpful strains), Strep or Klebsiella, parasites, protozoans, and whatever comes up on testing. Combine this with probiotic supplementation that matches your child’s stool studies. My preferred tools for assessing this are GI MAP and Doctors Data Stool Microbiology.
- Customize the special diet to your child. Skip dogmatic, one-size-fits-all approaches.
- Give enough protein! Kids may need anywhere from 1 to 2 grams of protein per kilogram bodyweight per day depending on degree of growth impairment.
- Give the right protein; assess first which proteins are triggering with lab studies. Replace trigger proteins with equal or better value non-trigger protein sources, and keep them varied.
- Use free amino acids. Supplementing with amino acid mixes that give all 8 essential amino acids (and not just glutamine) has been a big bonus in my practice for kids who need deep gut repair. Formulas and powders are available. These give the gut direct access to building blocks for new tissue growth and repair. I use anywhere from 5 to 15 or even 30 grams daily of this protein source, depending on a child’s needs or status. Caveat: These won’t work well without an adequate total diet around them to support energy needs.
- Give enough total food including “clean” (non sugary) carbohydrates, which are crucial for growth in children (carbs preserve protein for structure and function, and keep it from being burned for energy) and ample healthy fats and oils. Kids can need 4-6x more calories per pound than adults, depending on age and growth status. Don’t feed them like little adults – give energy-dense, nutrient-rich food.
- Mastic gum, licorice root, zinc carnosine, glutathione, mineral-rich foods or products like Restore are just a tiny sliver of the thousands of products that can aid gut tissue repair. Work with a knowledgeable provider who has used these in children before. Using these tools is a routine part of my practice.
- Correct sleep pattern so your child can sleep deeply and wake rested. Sleep is when our organs are busy with repair and clean up. Hint: Children who are underfed tend to sleep poorly and wake more often.
- Minimize stress in your child’s world. Don’t discuss “leaky gut” with younger kids and don’t frame food or their bodies as problematic. Use positive language and emphasize the power to heal, which we all have.
- Give it time (like, months), be chill, and remember that your child’s body is a miraculous thing with its own innate drive to grow, repair, and heal.
And Now For The Leaky Gut Fails…
- Using rigid diet strategies for growing kids can be too restricting to support growth, gain, and gut repair. Yeast free diet, GAPS, ketogenic diet, AIP, SCD, Paleo, or Body Ecology all have merits (and devotees!), and I use components of all of them in my practice. But in themselves, none of these were created for use in children (except ketogenic diets for seizure control) and can fail when children are already struggling to gain or grow. If you’re not seeing good growth, gain, and progress in behavior or food reactions with one of these strategies within 2- 4 weeks, or if initial improvements lapse quickly, then it probably isn’t right for your child. Customize to your kid instead!
- Needing your child to like any of this, including taking supplements, having blood draws, or accepting different foods. You’re the adult. They’re not going to make it easy for you – that’s a given. Hint: Picky appetites can improve with addressing these three steps – don’t assume your child “won’t eat that”.
- Staying on reflux medicines for months at a time. These will work against your gut healing efforts by keeping pH in the stomach too weak to initiate good protein digestion. They will also cause your child to feel less hungry over time, to eat less, and to become more picky – thus leaving your child underfed and unreplenished for the task of gut repair. Learn more about the downside of reflux medicines here.
- Using glutamine, vitamins, minerals, or lots of supplements before you situate the right feeding strategy for your child. Feeding strategy means knowing what foods to use, how much and which sources of protein, fats, and carbs, and for how long, to support your child’s expected weight and height.
- Being aggressive with fermented foods, probiotics, or too much Saccharomyces boulardii. These can backfire if used for too long or at too high a dosage, and may even start to create their own dysbiosis or discomfort.
- Leaving fungal, parasite, SIBO or SIFO, or other dysbiosis untreated or under-treated. This can interrupt appetite, digestion, and stooling and keep tight junctions from sealing up.
- Giving up after 2-4 weeks. This is a restore and repair effort that may take months, depending on how long your child’s gut has been in the weeds.
Want help? This is a lot! Let me sort the best options for your child. Contact me today to set up a time to work with me remotely or in person. Or, peruse my options for books and on-line-course support.