by Judy Converse | Autism & ADHD, Constipation, FPIES, Growth & Feeding, Uncategorized
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.
by Judy Converse | Autism & ADHD, Food Allergies & Sensitivities, GMO & Organic, Growth & Feeding, Infection, Illness & Nutrition
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.
by Judy Converse | Autism & ADHD, Constipation, Food Allergies & Sensitivities, Growth & Feeding, Infection, Illness & Nutrition
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.
by Judy Converse | Autism & ADHD, Food Allergies & Sensitivities, FPIES, Growth & Feeding
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.
by Judy Converse | Autism & ADHD, Constipation, Food Allergies & Sensitivities, FPIES, GMO & Organic, Growth & Feeding, Infection, Illness & Nutrition, Uncategorized
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.
by Judy Converse | Autism & ADHD, Growth & Feeding
I’m often asked if ketogenic diets are good for kids. Parents are trying this diet and having great results – why not put the whole family on a ketogenic diet?
It doesn’t take much searching to learn that ketogenic diets have been vetted for nearly a century, when they were first noted for their ability to control seizures. Even conventional training for dietitians has included training in ketogenic diets for decades – they’re not new.
The new part is using them for weight loss, fitness, and all sorts of chronic conditions, from cancer and autoimmune problems to Alzheimer’s, multiple sclerosis, or autism. You’ve probably seen experts – from Mark Hyman MD to David Perlmutter – singing the praises of ketogenic diets. But what about your kids? And, what about using a ketogenic diet for kids with autism?
Ketogenic diets use high amounts of fats and oils, lots of protein, and very little carbohydrate. Typically about 70% of all the food you eat on a ketogenic diet will come from fats and oils, with only about 5% coming from carbohydrates. By contrast, kids usually eat anywhere from 50-70% of their total diets as carbs, with 20-40% as fats – so this is a big switch.
Research is mounting to show that eating this way changes the bacteria that grow in your gut. By now, you’ve probably heard about how deeply we rely on gut bacteria for overall health. Gut bacteria are essential to our well being, in that they help us digest and absorb the nutrients we need. They also cut inflammation and protect us from invading pathogens – that is, if your gut bacteria profile is healthy.
This is critical in early infancy too, to avoid conditions like allergies and asthma later on. And gut bacteria play important roles in other conditions that have been regarded as exclusively psychiatric or neurological for decades, including autism – but for years, I have helped families reverse behavior and developmental concerns in their kids by restoring a healthy gut biome. Now research is finally mounting to show that this is indeed possible!
If you have a lousy gut bacteria profile (which you can acquire by eating a junky diet, or using antibiotics, reflux medicines, and steroid anti-inflammatories), chronic and systemic problems are likely going to ensue. It’s popping up all over the academic literature landscape, and I’ve seen it happen before my eyes in practice for years: Nasty gut flora = nasty kids, nasty poop, nasty behavior, poor eating habits, and chronic health problems!
Anytime you change your diet, you will change the bacteria in your gut, in about 2-3 weeks. Ketogenic diets change gut bacteria too, and it is through these changes that this diet can support renewed health. Ketogenic diets also change our body’s primary fuel from glucose, which is obtained by eating carbs, to ketones, which are obtained by eating mostly fats and oils. The brain, and all our organs and tissues, can run well on ketones. When the body is using ketones all the time, this is called being “in ketosis”, a goal that is closely monitored for people who use ketogenic diets to control seizures. Even tiny amounts of carbohydrate can trigger a seizure for some people with epilepsy. Being in ketosis is when seizure control can happen best, for people who fail on seizure medications.
But ketogenic diets for kids may have a cost. They may not grow as tall as they would if eating a diet with more carbohydrate in it. This was noted in this study in children using ketogenic diets. The children’s progress for linear growth (that is, height or stature) slowed down after 15 months on the diet.
This may be partly due to changes bone density. Effects on bone development were closely scrutinized in this study, which found reduced bone density with ketogenic diets for kids.
Effects like stunting from ketogenic diets for kids have been observed for many decades, and I have witnessed this myself in my pediatric nutrition practice. Kids who come to me already on a ketogenic diet follow what occurred in this study, that also saw slowed growth for height and weight in children using ketogenic diets. And in this study, the number of children who fell below tenth percentile for height more than doubled, from ten to twenty-three children, while using ketogenic diet. They also had more than expected kidney stones and bone fractures. Children also may gain weight more slowly on ketogenic diets, impairing their growth pattern for both weight and height.
Slowed growth is not just a physical issue. It can have cognitive, functional and behavioral impacts too – and this another often-seen issue in my pediatric nutrition care practice. Ketogenic diets for kids may thus create unwanted cognitive effects, as described in this study on developing rats. In my practice, one of the most common findings for school children with ADHD/ADD is that they are underfed – ironically, often because they have been using a stimulant medicine that suppresses appetite. Eating poorly, they fall in and out of ketosis during the school day and disintegrate behaviorally for focus. Their food intakes need improvement, but being in ketosis does not seem consistently helpful.
These impacts may not be a concern for adults on ketogenic diets. This very small study of only three individuals did not find changes in bone density after five years on a ketogenic diet. This study of sixty-five adults saw reduced bone density in groups using either very low carb or calorie restricted diets for weight loss, but it’s unclear if the subjects sustained ketosis or not, or if bone density dropped simply because subjects weighed less at the end of the trial.
The Up-Side of Carbs
Carbs have been demonized for sure, and not without cause. I have seen thousands of food diaries over my years in practice for infants, toddlers, kids and teens (thank you to all those parents who filled those out with dispassionate honesty!). Without question, many kids I encounter come in with carb-heavy, low quality diets that rely too much on processed grains, sugary yogurt, juices, or starchy crackers and snacks. Not good.
But there is an up-side when eat kids about a third to half their calories from clean carbs. Kids are growing. Adults aren’t. When we’re growing, carbohydrates from food we eat spare the protein and fat we eat, so that they can be used for other critical tasks – both metabolic and structural – that adults simply don’t have because they’re not growing.
A child needs a lot more energy per pound than an adult. Depending on a child’s age or growth status, they can need as much as five times more calories per pound than an adult! This could be the same as you or I eating ten thousand calories every day, just to maintain a normal healthy weight (imagine what would happen!). Strangely, even when kids use calorically adequate ketogenic diets, they can still experience stunting.
This might be related to the fact that kids’ brains use about double the amount of energy every day compared to an adult’s brain, in terms of the percentage of energy derived from the food you eat. This is true until about age four, when head growth slows down relative to the rest of the body.
Long short, adults aren’t growing, and thus don’t need a sparing effect from carbohydrates.
The big caveat here is that kids need clean carbs. When kids eat healthy, clean carb sources with good protein and ample varied fats, they grow well, and behave, sleep, and learn well too – I’ve seen this hundreds of times. “Clean carbs” are unprocessed, no-added-sugar, whole foods. Think vegetables, legumes, and tubers – parsnip, squashes (butternut, acorn, spaghetti squash, zucchini, pattypan), asparagus, cruciferous vegetables like Brussels sprouts, broccoli, or cauliflower, carrot, potato or sweet potato, greens, lentils, chick pea or beans, green and wax beans, taro, or manioc are all carbs to have on your menu rotation. They provide pre-biotics for your gut bacteria to work with for healthy fermentation in the gut and nutrient production, not to mention their bonus of minerals. Fresh unsugared fruit (not fruit juices) is helpful too. When it comes to grains, sprouted grains will be more digestible, but grains are by no means absolutely necessary in your child’s diet.
One not so great carb is yogurt – because yogurts for kids are generally loaded with added sugar or sugary fruit. Most yogurts on store shelves have far more sugar in them than fat or protein, so if your kid chugs drinkable yogurt tubes or even a non-dairy yogurt cup daily, switch to a no-added sugar option and use a drop or two of organic stevia to sweeten it if need be.
But Babies Are Born In Ketosis! So…Doesn’t That Prove Ketogenic Diets Are Good For Kids?
When babies are born, of course they’re in ketosis – they’re not eating anything yet at all, and need a fuel to carry them through what may be hours of labor. Ketones work great. A young baby (a month old or less) relies often on ketones to fuel the brain for its first few weeks. Ketones are preferentially allowed into the delicate new brain over glucose as an energy source in that first month too. This is when “early milk” or colostrum has more than twice as much fat in it than it does carbs. Does that mean ketogenic feeding is the next rage for babies and toddlers? I don’t see it. By the end of the first month, breast milk nutrient ratios shift, so that it’s nearly 40% carbohydrate, and this doesn’t change much even for moms eating ketogenic diets. In other words, after that early milk, we evolved to give our babies 30-40% of their calories as carbs in the first year; our bodies will preserve this ratio in our milk no matter what we eat.
For infants or kids with seizure disorders, ketogenic diets can be miraculous. They are definitely worth trying and definitely warrant professional guidance. They may work because they do change gut bacteria, and eating any carbs – even clean carbs – above 20-60 grams/day (which is quite low) may trigger relapse of seizures. Follow your care team’s advice if this is your situation.
Ketogenic diets that are poorly monitored can be dangerous. I don’t recommend launching one for kids without professional guidance. If you have, watch for these warning signs of hyperketosis: Rapid, panting breathing; rapid heart rate; facial flushing; irritability; vomiting; or unusual lethargy. If you see those signs, call your doctor right away or go to your nearest emergency room.
For kids with autism or other conditions, there are options to tailor ketogenic diets to each child so that functioning improves dramatically, without compromising growth, bone health, or kidney health. This is one of my practice offerings, so contact me if you need help. And if you’re still laughing about that long list of veggies that your kid would never eat, let’s get in touch to work on that. Changing that gut bacteria profile can change your kids’ palate and appetite!
