A parent in my caseload recently told me that her child – in addition to getting an autism diagnosis – had just been given a diagnosis of eosinophilic esophagitis, or “EE”. Both diagnoses are not unusual in kids in my caseload, and they frequently show up together. So it didn’t surprise me to hear this from this parent. The part that surprised me was the play-dough birthday cake.
Having EE means many food proteins become intolerable, and can’t be eaten. This family had been given such a dismal outlook on how to feed this child in the context of EE that, for birthday time, they made a prop birthday cake out of play dough. Candles were real, cake was fake – just a prop to pretend with. The cake was not to be eaten, just looked at, and used as a vehicle for birthday candles. No one had found a way to recover the child’s tolerance for even a few foods.
One of the best things about my job is hearing anecdotes like this. They are certainly motivating. In my view, when expert medical teams around the country leave children with props for cakes more than once or twice in a lifetime, something is awry. First question: Why can we not do better? Second question: Why are these children getting EE in the first place – a condition that is regarded as recent in pediatrics?
It’s tragic that EE is now so common that moms’ groups and list serves exist to support families needing tools to create a non-cake. For now I’ll skip opinion and analysis of why EE (much less autism) has emerged among this generation – that’s a whole other blog. It’s also tragic that, as was true in this case, once the doctor finds this, no referral was made to a professional who can work on effective solutions: Safe foods, formulas, recipes, the right probiotics, or bowel microflora corrections that can support growth, gain, learning, and development. I hear this all too often.
EE is a fancy long name for too many white blood cells in the walls of throat tissue. White blood cells show up when they think there is a job to do, like fight an infection. But in EE, the culprit is often allergy or sensitivity, not infection, so the white blood cells keep showing up for no reason. They can eventually damage the throat (esophagus). The eosinophils (white blood cells) are much like those that are too active in kids with inflammatory conditions like asthma, skin rashes, or chronic sinus infections.
EE is painful. It often occurs with reflux, which exacerbates the EE and pain. This is especially challenging for kids who are non-verbal, because they can’t tell you when they are in pain. They usually act out; it’s their only way to communicate pain and frustration. These are the kids in my practice who grab food away from family members, because they don’t want their siblings or parents to have pain. They think food causes pain for everyone, that pain with eating is just part of life. I’ve also met kids who take pain out only on themselves, with self injurious behavior. Tragic part: Seeing them medicated for “behavior” rather than screened and treated for a painful GI condition.
The good news is children with EE may be able to improve the health of the esophagus and GI tract with some out-of-the-box measures, along with the tried and true. Work these into your child’s routine and expect improvement after 4-6 months, to allow time for tissue repair.
– Use elemental protein sources. These are specialized formulas that come in various formats: Ready to drink in a juice box and straw that your child can bring to school or pack to travel; powdered, mixed as one does for infant formula; or modular – that is, just pure powdered amino acids (these replace food protein) that can be mixed in anything, from spaghetti sauce or apple sauce to smoothies or gravy. Brand names are Elecare, Neocate Infant, Neocate Junior, or Splash EO28. These are covered by insurance for EE in some states.
– For an elemental protein source for kids who hate the taste of formulas above (I get it – I’ve tried them all and my own son used some of these for years), try Nutricia North America’s amino acid mixes, usually made available for modular feeding in G-tubes. Blend into safe foods for you child to use orally. I have used this tactic often with good success; you will need a dietitian’s or doctor’s authorization to order this yourself. Though amino acids don’t taste good, finding ways to flavor smoothies is a possible – think odd combo’s like avocado and bittersweet cocoa powder (dairy/casein free). For recipe ideas, visit FoodSensitivityJournal.com.
– Get food allergy (IgE) and food sensitivity (IgG) screening. These screenings can describe two different ways that the immune system may be reacting to foods. Prioritize the worst offenders by removing them, rotate the rest. Removing all food protein is an extreme measure that is usually unnecessary and unsuccessful, even in kids with multiple allergies and sensitivities.
– Treat intestinal fungal (yeast or Candida) infections. Candida species can worsen reflux, disrupt normal digestion and absorption, and trigger painful constipation if allowed to flourish at the expense of beneficial bacteria in the human gut. Untreated bowel infections are a top finding in my practice, for children whose treatment for EE failed at their major medical centers.
– If grains are an issue – and gluten in particular – there are still ways to make a birthday cake. Get to know the many options available for gluten free baking: Mixes, cook books, and recipes are everywhere. Gluten free birthday cakes are indistinguishable from a wheat flour cake when done right. Eggs can be replaced with non-protein egg substitutes.
– If your child has used antibiotics often, replenish healthful gut bacteria with probiotics. Use potencies of at least 15 billion colony forming units (CFUs) per dose, with blends that include Lactobacillus and Bifido strains. Check Special Needs Kids Go Pharm Free for more detail on using probiotics in infants and children. Some children in my practice have responded best to potencies as high as 60-100 billion CFUs/day of mixed strain friendly bacteria probiotics. Most store bought brands deliver 1-5 billion CFUs per dose. If you’ve tried probiotics from your local health food store and not seen results, you may need to go to a stronger product. Consult a provider experienced in using these.
– Extreme and severe EE cases may be placed on an elemental formula diet, which lets the GI tract rest, heal, and recover, while getting the nourishment it needs. Do this with close medical supervision and have a plan to transition back to food within a few months. Monitor gut microflora and keep it healthy, as elemental formula may shift the colonies of microbes in the gut to less favorable species. Insist on referral to a knowledgeable pediatric dietitian to help you. Liposomal glutathione is a supplement that has been helpful in person with inflammatory bowel conditions; add this to your regimen too if you want to accelerate gut tissue healing. Glutathione is an antioxidant that is ample in a normal, healthy bowel, but depleted in persons with inflammatory conditions of the GI tract.
– Good news has continued to emerge on potent natural anti-inflammatories like curcumin and turmeric. Eating these in foods is fine, if you like lots of these spices and of course, if your child can tolerate eating foods. But when used medicinally, higher amounts are needed than are normally in a serving of Nepalese curry. If your child can swallow capsules, curcumin and turmeric may help cut inflammation while helping to balance bowel microflora too. Enhansa is a product showing success in my practice for some children (I don’t sell it; you can order it from Lee Silsby Pharmacy).
Here are some of my favorite resources for kids with EE, and multiple food protein intolerance/allergy:
Gluten free girl (see the “cake” button)
Mary Capone, celiac chef (Italian specialties a specialty)
Gluten and Peanut Free Summer Camps
Neocate Junior elemental formula for kids over 1 year old (link from here to infant options too). This can be purchased over the counter or prescribed. It’s widely available on sites like amazon, e-bay, or NexTag; coupons are often available to reduce the cost of Neocate. Some states may cover this formula on insurance with an EE diagnosis.
Options to replace eggs in recipes
State by state insurance mandates for specialized formulas (inherited disorders)
States with mandated insurance coverage for specialized formulas for EE
Essential Amino Acid Mix – a powder that can be added to soft foods or thick drinks as a safe protein source. This requires authorization from a registered dietitian or physician, and may be covered on insurance in some states
When do kids need supplements?
If you’re reading this, then you have probably already discovered, hopefully with some guidance from your team of health care providers, that your child has a nutrition problem. Or maybe you’ve come to suspect there’s a deficit for some nutrients in your child. Should you fix it with a supplement? Does that work? What’s the best way to use those?
These are important questions for children with special needs like diabetes, food allergies, asthma and inflammatory conditions, developmental concerns like Down’s syndrome or autism spectrum disorders, inherited metabolic disorders, seizures, or growth and feeding problems. As many as 60% of children with special needs have nutrition problems that can potentially impair their functioning, learning, growth, or development (1). It has been known for decades that keeping children well nourished, whether they have special needs or not, helps them reach their functional potential, by supporting learning, growth, and development.
Supplements may fit into this, and part of my job as a pediatric dietitian is figuring out if, when, and how they do. This is something to discern based on individualized nutrition assessment. I take into account several pieces: Medical history, signs and symptoms, a food diary, a child’s growth history, circumstances of the child’s gestational period, delivery, and early infancy, and so on. The last piece to fill in the blanks would be lab data, because lab data alone can’t describe a child’s nutrition status. Here are some tips to help you use supplements more effectively. More tips are in my book Special Needs Kids Eat Right (2009, Penguin/Perigee) which you can pick up in most bookstores or libraries, or order via your favorite on line bookseller.
– Kids need food! In fact, they need much more food per pound than adults. If an adult were to eat what a toddler needs per pound, that adult would need 8,000-10,000 calories per day just to maintain normal weight. Giving lots of supplements without enough food means your child will probably not be able to use those supplements as intended. So, before buying supplements, do the footwork to give your child adequate and nutritious foods. How to do this for picky eaters with special needs is covered in Special Needs Kids Eat Right.
– Supplements don’t fix problems caused by inadequate food intake in kids. Anxiety, insomnia, irritability, rage/reactivity, behavior, low muscle tone, fatigue, cognitive difficulties, frequency of infections or illnesses, and school performance are all affected by total food intakes in children. Give a balance of healthy fats and oils, clean carbohydrates that aren’t too sugary, and easy to digest proteins every day.
– If you’ve been given a list of supplements to buy based on lab results, beware. Giving a pill for each lab finding out of reference range is a cumbersome, ineffective strategy, in my experience. For nutrition interventions to work well, children need the right amount of food, foods they can digest well, and good digestion and absorption. Your provider can help you assess whether your child needs to repair digestion and absorption before giving supplements.
– Rule out bowel infections in your child with your health care provider before beginning a complex supplement regimen. Remember, whatever you feed your child will be eaten by his resident bowel bacteria first. New research is emerging to describe how important this bowel flora can be – from helping us prevent inflammatory conditions (2), to encoding our own GI tracts with the skill to make digestive enzymes (3). Other research shows that unhealthy bowel bacteria can impact behavior or even seizures in children (4, 5) – making it all the more crucial to balance this piece before using supplements that might “fertilize” the wrong bowel flora.
Those are just a few reasons why supplements need to be worked into a total care plan for your child, rather than given without thoughtful strategy. Work with your health care providers to get it right; given in the right total context, the right supplements can work very well for children. If you need more help and information, contact me or schedule an appointment at NutritionCare.net.
1. Nutrition In The Prevention and Treatment of Disease, 2nd ed. Ann Coulston and Carol Boushey, Eds. Elsevier Academic Press. Burlington, MA and London, UK: 2008
2. Maslowski KM et al. Regulation of inflammatory responses by gut microbiota and chemoattractant receptor GPR43. Nature 2009 Oct 29;461(7268):1282-6.
3. Hehemann JH et al. Transfer of carbohydrate-active enzymes from marine bacteria to Japanese gut microbiota Nature 2010 April 8;464 (7269):908-912
4. MacFabe DF et al. Neurobiological effects of intraventricular propionic acid in rats: Possible role of short chain fatty acids on the pathogenesis and characteristics of autism spectrum disorders Behavioural Brain Research 2007;176:149–169
5. Herawati R et al. Colony count candida albicans of stool in autism spectrum disorders. Clinical Pathology and Medical Laboratory, Airlangga University E-Journal 13(1):November-2006
[/caption]We’d all nod in agreement if asked, “…does nutrition matter for babies and kids? Is it important that they have enough to eat? Does it make any difference what
they eat?” I bet any pediatrician would too. So why don’t we tap that when it comes to helping special needs kids thrive to their potential? After all, these kids are at higher risk for nutrition problems than typical peers – problems that often go unnoticed, and have the power to impede progress.
We can, and this is what I have done in my pediatric nutrition practice for over ten years, working with kids who have asthma, severe food allergy, autism, Down’s syndrome, arthritis, growth failure, feeding problems, ADD or ADHD, clinical depression, and more. On top of that work, I’ve written Special Needs Kids Go Pharm-Free – because even after a decade working with kids, I am surprised that parents still have so little reliable information on how to leverage nutrition-focused tools for a child with a chronic condition or disability. Just as they can for any child, nutrition tweaks can make or break the difference between staying well or getting sick a lot, succeeding versus struggling at school, growing as expected or being stunted, and relying on symptoms-only drug treatments versus ditching the drugs altogether to feel and function even better.
Pharmaceuticals are not a bad thing. But our health care system may be stacked to make these too much of a good thing for our children. For example, prescriptions to young children for stimulants (like Ritalin) and proton pump inhibitors (reflux medications) – just two types of drugs – have skyrocketed in recent years. Children are now more medicated and more immunized than ever before – but are more chronically sick and disabled too. Between 1980 and 2000, a 57% increase occurred in the rate of children with disabilities served by government programs. In our public education system nationwide, about one fourth of learners are served under the Individuals with Disabilities Education Act (IDEA) – and the increase in number of children served under IDEA has grown at twice the rate of the general pediatric population. In the same time frame that Americans have used more medications than ever, our overall health related quality of life has declined.
What this means is that our children have become more sick and disabled in the last thirty years, not healthier, and that prescribing more medications may not be helping. Physicians aren’t trained in non-pharmaceutical strategies for disease management in the US, as they are in several other developed countries. Controversy continues regarding the influence the pharmaceutical industry may wield here on medical training, clinical trials, even medical journal publications – making good information on strategies like nutrition almost invisible.
Gluten free noodle bowl and gluten free pot stickers. No sweat.
I’m not sure how to eat these. Anybody? Beuller?Special Needs Kids Go Pharm-Free
to the rescue. Affected children are often assumed to be presenting in a certain way because of the condition or disability itself, rather than because of a fixable, nutrition-related impairment. Here are just a few examples of how nutrition can impact a child with a learning difference, developmental disability, or chronic condition. More examples with strategies to address them are found inSpecial Needs Kids Go Pharm-Free
. These spotlight nutrition problems that have been linked in myriad clinical trials and public health data to learning deficits, growth or developmental impairments, insomnia, psychiatric disorders, or behavior problems in children; others abound in my case files:
– Children with Down’s syndrome may have gluten sensitivity or celiac disease more often than typical peers. Even in the absence of celiac disease, untreated gluten sensitivity in itself may impede growth, stooling, and functional abilities for a child with Down’s syndrome. A gluten free diet may help a Down’s child make unexpected leaps.
– Over a third of boys with Asperger’s syndrome tend to be clinically underweight – that is, their body mass index (BMI) is <10th percentile. This is a growth pattern deficit that may impair infection fighting, sleep, continence, and cognition. The only correction: More food! Healthy fats, easy to absorb proteins that are not inflammatory, good carbs – and plenty of them all. In some cases, specialized formulas or custom made smoothies can help too.
– In puberty, low BMI in boys is linked to low total cholesterol. This is inversely related to testosterone level, meaning that testosterone will rise when cholesterol is too low. Low total cholesterol has been linked to psychiatric disorders, suicidality, and aggression. Excess testosterone has been noted in about a third of boys and girls with autism; aggressive or obsessive compulsive behaviors showed improvement, in early work treating high testosterone with medication in these children. Keeping a child’s BMI above 20th percentile, plus allowing ample daily healthy organic fats and oils, are nutrition measures that may help.
– Any child with a self-limited diet (eats just a few foods) or mechanical problems with feeding (tube feeding, swallowing disorders, oral tactile defensiveness) can quickly become depleted for minerals like zinc, which allows normal appetite, growth, and immune function; magnesium, which helps nerve cell function; chromium, which helps control blood sugar; and selenium, a key antioxidant. Children with Down’s syndrome in particular should be screened for zinc status. While a high potency supplement can help, so can slow cooked stews and broths, chock full of vegetables and gluten free carbohydrates like quinoa (a grain that is also high in protein), black rice (higher in iron than regular rice), lima or kidney beans (to add zinc, protein, fiber) or breadfruit and potato (great for potassium). Adding grass fed beef or free range poultry – organic if you can afford it – will further up the mineral, protein, fat, and calorie content of a crock pot meal.
– Any child with a self limited diet or chronic inflammatory condition like cystic fibrosis, rheumatoid arthritis, Crohn’s disease, food allergies, or asthma may have sub-optimal iron status – which will make them more susceptible to infections, more cranky, hyper or irritable, less able to focus at school, and less likely to sleep well. Entrenched iron deficiency (anemia) can leave your child tired, averse to exertion or typical play activities, showing shiners at eyes, and prone to eating non-food items. Have your pediatrician screen serum iron, ferritin, transferrin, hemoglobin, and hematocrit. If a supplement is needed, use one that is gentle and well absorbed, like ferrous bis glycinate instead of ferrous sulfate – but only with supervision, as iron quickly becomes toxic to children.
– Copper is a metal we need in extremely small amounts, and a potent neurotoxin, if too much circulates in a free, unbound form. High serum copper level has been linked to several psychiatric diagnoses. Some children with autism may need treatment to reverse copper toxicity and should avoid copper in daily multivitamins; special formulations are available for this purpose.
– Several studies have documented the presence of opiate-like polypeptides from poorly digested food proteins in autism; these have neurotransmitter effects that can impede language, pain tolerance, stooling, cognition, sleep, and behavior. Special diets or digestive enzymes that target these proteins have shown promise.
– Children with autism were found to have four or more GI issues, including histological changes, diarrhea, reflux, constipation, and abnormal endoscopies, about 40% of the time, compared to 5% of the time for their neurotypical siblings, in a study published in Pediatric Gastroenterology. While some studies countered this finding, debate centers on methodology weaknesses in those studies that “bury” evidence of gastrointestinal problems in these children. In clinically standard nutrition screening in my own practice, I routinely find these problems in children with autism. If your child has a picky, weak, or rigid appetite, vomits undigested food, is dependent on medications for constipation or reflux, has undigested food in stool, can’t move bowels at least three times a week, has more than three loose or foul stools/day, or often presses his stomach on pillows, knees, or furniture for comfort – these signal atypical digestion and absorption that may mean lessened health or functional ability for your child. Several nutrition interventions may eradicate these uncomfortable symptoms and improve the flow of crucial nutrients to your child’s brain, muscles, bone, and organs.
– Food allergies and sensitivities may go undetected in kids with Crohn’s disease, rheumatoid arthritis, autism, asthma, or other conditions. Help can be had with correct screening for these, plus plug-ins of hypoallergenic formulas, special diets, or supplements to diminish inflammation.
– Children with seizure disorders may improve with dietary measures beyond the traditional ketogenic diet. Lessening inflammatory foods, avoiding neurotoxic trigger ingredients like glutamate, glutamine, phenols, or colorings, or treating undectected bowel infections for Candida or Clostridia are measures that have helped children in my practice with seizures.
Changing how your child eats, using a special diet, or adding targeted nutraceuticals may be a long term commitment for a person with a chronic condition or disability. But it is a critically worthy one, if it means a child can improve beyond expectations, attend a regular school with no aide, avoid residential care or placement as an adult, have independence or have a job, and contribute to society in what ever way their unique talents and gifts allow. I have witnessed all of these outcomes in persons with disabilities because of nutrition interventions. This is not new, not novel, not even alternative – it’s simply engaging what we already know to be evidence-based in child nutrition. Any parent can start tapping these tools anytime, with Special Needs Kids Go Pharm-Free.
Biomedical interventions for autism can get a little overwhelming
Recently I held a “Biomedical Troubleshooting” session at the Imagine! Colorado offices, sponsored by Autism Society of Boulder County. Both veteran and newbie parents showed up – parents who had done everything from heavy metals chelation and special diets, to nothing but behavioral interventions – but across the board, the same questions were asked: Which diet does my kid need for an autism diagnosis? What lab tests? Special food, weird meal routines, hours in the kitchen making bone broths and nut milks – is it worth it?
Well, there is no “diet for autism”. Every child with autism in my practice is unique. There are several nutrition and GI problems that come up often with an autism diagnosis, and these are treatable. I map those for families, using clinical standards for nutrition assessment as well as functional nutrition lab tests that look deeper for problems. Find the trouble, make a plan to fix it, and children feel, function, learn, grow and behave better. Nutrition perfectly supports and complements all your child’s other interventions. All are important. But none unravel underlying physiological barriers to progress the way a targeted nutrition program can.
It comes down to being a nutrition detective, and finding that nutrition understory that is meaningful in your child’s case. Whether you have placed your child on Gut and Psychology Syndrome diet (GAPS), Specific Carbohydrate diet (SCD), gluten – casein free (GFCF), low oxalate (LOD), Body Ecology diet, yeast free diet, Paleo, Feingold, or no diet at all – you first need to know if it’s the right measure for your child. I meet families week after week who implement special diets without expert help. Sometimes it works wonders… and sometimes it just drives a family nuts.
This didn’t emerge anew in the last few years, just for kids with autism. I’ve been a registered dietitian since 1989. In both my graduate and undergraduate training, much emphasis was placed on infant and child health, and how nutrition impacts these. Since about the mid 1990s, “biomedical treatment for autism” tools have tapped tenets in pediatric nutrition, and expanded on that evidence base with an integrative medical approach. This works for kids with any chronic condition – from autism, to ADHD, epilepsy, growth or feeding problems, Down’s syndrome, or severe behavior and mood problems. And, good news, pieces of this may be accessible within insurance networks you already have.
For instance, before you leap into provoked urine toxic metals tests, spaghetti squash fries, and methylcobalamin injections (all of which their place when indicated), knock off the simple stuff first with your mainstream physician. These are things that can also profoundly impact a child’s behavior, sleep, growth, learning, appetite, immune function, or development – and may prevent progress with more novel therapies if left unaddressed:
1 – Is your child underweight, below 5th percentile for age for body mass index (check here), eating enough most the time? A shortage of just one or two hundred calories a day over the long term is enough to derail a child. In fact, low body mass index is linked to more frequent, more severe infections in kids, as well as more difficulty with sleep, behavior, focus, and attention.
2 – Does your child hold it together through the school day, then blow up or show rage and reactivity once home? Does this shift abruptly with a hefty snack? Check usual calorie needs for kids here, to see if your child is coming up short. Check usual protein needs here. You can also work with your provider to screen for bowel infections, and rule out inflammation from foods with food allergy and food sensitivity testing – both of these can drive mood swings, anxiety, and appetite in kids. If your in network provider isn’t familiar with thorough testing, this is my niche – schedule a free ten minute chat to talk to me!
3 – Got iron? Iron is key for learning, focus, attention, mood, behavior, sleep, and immune function. Some children with autism don’t absorb or metabolize this typically; anemia and poor iron status are common problems for children with or without autism, across the US. Balancing iron metabolism is crucial for kids. Ask your pediatrician to check ferritin, serum iron, and transferrin to get a sense of whether diet or supplements can help. Ferritin levels below 30 – though considered “in reference range” – usually correlate with lesser ability for focus, attention, and behavior – plus more frequent infections – in my experience. Since iron can become toxic if used incorrectly, don’t use iron supplements for a child without your provider’s input.
4 – Got pica? If your child puts non-food items in his mouth often, eats non food items, has oral tactile sensitivity for certain food textures, or has difficulty swallowing or tolerating food textures in his mouth, then a review of mineral intakes from foods or supplements is in order. These symptoms can signal problems like poor status for iron or zinc, or heavy metals exposures. Eating non-food is called pica, and is a classic flag for mineral imbalances. Learn more about pica here. Correcting mineral balance can dramatically improve behavior, mood, self regulation, anxiety, rageful reactions, and more.
5 – Gut biome – the bacteria populating your intestines – is crucial for digestion, absorption, and even immune function. Is your child dependent on Miralax or reflux medication? Needed antibiotics? These can disrupt that biome, and change how foods and nutrients are digested and absorbed. If your child isn’t able to pass comfortable stool daily without prescription medications, then screen for bowel infections or inflammation from foods. Many functional nutrition lab tests can define the biome in enough detail to direct treatments, so chronic constipation or diarrhea can be resolved. Normal passage of stools means optimal uptake of nutrients, and this means the brain gets what it needs to function every day.
6 – If you feel you’ve done it all and just want to throw in the towel, two thoughts: One, call me and let’s see if you really un-turned all the possible stones. Two, call me, and let’s discuss how to explore immune dysregulation (autoimmune reactions, immune deficiency) as an underlying piece of an autism presentation. Promising treatments are becoming more and more available and I am happy to pass these resources on to my patient families.
There are many other nutrition-detective steps I take in practice to bring children through assessment. We create a sequence that fits your family. In fact, nutrition intervention may be one of the least expensive and most beneficial tools you engage. I offer new patient families a six month, six visit Nutrition Transition package for at $1200 that maps the journey, from lab tests to supplements, foods, recipes, and meal plans. We move at a good clip and get results. I find discounted supplements and lab test fees where possible for my patient families, and throw in free copies of my books too.
Jumping out of sequence can backfire, which is why many families have mixed results when using nutrition care, biomedical tools, and special diets for autism. But working a methodical, professionally monitored nutrition plan may afford your child a few nice leaps, before you order up a $3500 battery of tests with an out-of-network doctor and pay thousands for six hours of his face time. For more info on sequencing, troubleshooting, and using nutrition-focused tools for autism, see Special Needs Kids Eat Right and Special Needs Kids Go Pharm-Free. And, call me!
How to help your baby get some sleep?
News this week from Hasbro Children’s Hospital in Rhode Island: A lot of kids don’t sleep. They needed a study to figure that out?
The study also found that youngsters with insomnia are medicated for it, perhaps too much. Ironically, a day or two before this story came out, CNN announced a study decreeing it “abusive” for parents to give a cold or allergy medicine (like Benadryl), to help a child sleep instead of scream through a long flight. What’s a parent to do?
This is one of the many dilemmas that prompted me to write Special Needs Kids Go Pharm-Free. Kids are medicated for more problems than ever before, but less healthy than a generation ago. And sleep is so crucial to overall health.
Sleeplessness in a baby, child, or teen is one problem you might be able to tackle easier than you think, with nutrition tools instead of medications.There are several options to choose from if you’re wondering about supplements. Melatonin is just one of them. Others include theanine, chamomile, rooibos, ashwaghanda, holy basil, taurine, tryptophan, 5-hydroxytryptophan, magnesium glycinate, calcium lactate, and more. They can be helpful, and are best used with some professional guidance.
Food intolerances and digestive issues can disrupt sleep too. I often work with parents to rule these out, before adding a supplement to improve sleep. I believe it’s best to work at the root cause when possible.
Melatonin is a safe and easy place to start, as long as you’ve ruled out any serious health problems with your pediatrician first. It can trigger intense dreams in children who don’t need it, and may make your child more wakeful. This may imply a need for different supports along the serotonin pathway, which is shared with melatonin. Or it may suggest other supports are needed altogether – for adrenal glands, certain minerals, for reducing inflammation, or for digestive issues. If melatonin is helpful, use only as long as needed and in the lowest effective dose. More is not better. And, know that it’s worth looking more broadly at your child’s functional nutrition picture. Using melatonin long term may reduce testosterone levels or may mask other imbalances needing support. Here’s an excerpt about melatonin from the chapter on sleep in my book Special Needs Kids Go Pharm-Free: Nutrition Focused Tools To Minimize Meds and Maximize Health and Well Being (© contact me for permissions) :
“... As mentioned earlier, melatonin is not a medication, but a hormone we make ourselves to signal the brain into sleep. I have not used melatonin in children younger than eighteen months. Is it safe for infants? Probably, but this is a question to review with your pediatrician. Infants make a lot of melatonin naturally; if they aren’t sleeping, it may be quite depleted, a state that is possibly detrimental for them. Some research suggests that melatonin may be lifesaving when it comes to SIDS: Infants who die from SIDS have very low levels of melatonin in their brains. Because melatonin is a powerful antioxidant, there is speculation that it may play a role in preventing the severe, life-threatening oxidative stress that occurs with SIDS. Discuss giving your baby melatonin with your health care professional.
If your infant is persisting in a stressful, screaming pattern at night instead of sleeping, melatonin may be useful, but ask your pediatrician about dosing first. Prolonged screaming is not healthy for infants. It is extremely costly for them, in terms of energy balance. Young infants need more than twice the calories per pound that a school-age child requires in order to maintain a normal growth pattern. When an infant is awake more than normal, or expending precious energy screaming night after night instead of sleeping, growth and immune function can suffer. This can, of course, also harm an infant’s delicate emotional well-being and threaten normal attachment to his or her parent.
Young children should not need more than 1–2 milligrams of melatonin per night. Start with a very low dose, and as always, inform your provider team before you start. Use the least amount to encourage sleep, and no more. Many preparations for melatonin are available that are suited to children, as drops, melting wafers, chewables, or sublingual sprays. These are given under the tongue and work fairly quickly; they don’t need to pass through the stomach and small intestine to take effect. Some parents give melatonin 30–60 minutes before bedtime, to shorten the time it takes a child to actually drop off. Rules for using melatonin:
- Start with a quarter-milligram dose for young toddlers.
- Start with a half-milligram if your child is two years or older.
- Stop at the lowest effective dose. More is not necessarily better.
- Children with autism may need more. Still start at a low dose, and work up slowly.
- Older children (70 pounds or more) can start with a 1-milligram dose.
- Periodically try weaning your child off melatonin. He may no longer need it.
- An effective dose lets your child fall asleep in about 30 minutes or less, and stay asleep, most nights per week.
- Don’t use melatonin preparations with other supplements in them. If there is a problem, you won’t know which component is causing the trouble.
- Avoid melatonin preparations that include pyridoxine (vitamin B6). This vitamin can trigger wakefulness. Your child may do fine with extra B6 early in the day, but may struggle to sleep if it is given at night.
Children with autism, anxiety, depression, or other mood disorders may benefit from a higher dose of melatonin. If your doctor isn’t sure on dosing, ask for a referral to someone who is sure. This may be a psychiatrist, a naturopathic doctor, or even a neurologist. A clinical trial that used melatonin in children with autism showed no side effects, other than good ones: There was a reduction in compulsive and ritualistic behaviors while the kids with autism used melatonin. Some of the children needed up to 6 milligrams of melatonin to reap benefits. All children are different, so start with the smallest appropriate dose and use only what is needed to elicit the benefit of sleep.“
For more on how to use other supplements for sleep, as well as how to troubleshoot foods that may be keeping a child awake, pick up a copy of Special Needs Kids Go Pharm-Free. Wondering what else is in the book? Click here for table of contents.