Kids and keto: can a high-fat low-carb diet help with ADHD, autism and more?
When Diet Doctor posted a request in mid-April asking for parents to share their experiences of putting their children on the ketogenic diet to help with ADHD, autism, and other neurologic conditions, more than a dozen families responded.
Parents from Australia, Germany, South Africa, Canada and the US all reached out. Some had only had their child, or children, on the diet for a few weeks, too soon to see definitive results – but they were hopeful and committed to stick with it.
Others sent inspiring stories, even videos, of before and after transformations.
One of those was the Nusky family, of Cincinnati Ohio, who had previously tried dozens of ways to help their son Brandon manage the symptoms of his Tourette Syndrome. Along with this challenging neurologic condition, which causes him to have repetitive vocal and motor tics, he also has obsessive compulsive disorder and ADHD.
It’s a trio — Tourette’s, OCD, and ADHD – that often appear together in some children, suggesting, researchers say, that there is an underlying shared neurologic pathway.
Up until a year ago Brandon’s tics — such as constantly rolling his head from side-to-side — could be so exhausting and uncontrollable for him that on bad days he told his parents that he would be better off if he killed himself or if they killed him. He was only 7 years old.
“That kind of thing just breaks your heart. We would do anything to help him,” said his mother, Krissy Nusky.
And the family did try everything: veganism, gluten-free diet, chiropractors, homeopathy, oils, medications, behaviour therapy. “We have spent thousands of dollars and nothing helped,” said Krissy.
Then a year ago, on the advice of their pediatrician, they tried the ketogenic diet. Krissy remembers how the pediatrician posed it. “He said: ‘There is a diet you can do. It is very difficult. Most parents won’t stick with it. But if you do stick with it, it may help.’ ”
Nothing to lose; everything to gain
The Nusky family felt they had nothing to lose. A year ago the whole family adopted the ketogenic diet — parents, Brandon, now 8, and his 10-year-old sister.
And unlike the pediatrician’s warning, they have not found it hard at all.
Gone from their meals now are all the refined carbohydrates, potatoes, rice, flours, grains, sugar, cookies, cake, cereals, porridge, juice, and fruit — except berries. Meals are now salads and vegetables with hamburger patties (without a bun) or meat and salad. Krissy now makes homemade keto egg noodles with a tomato sauce to replace the spaghetti with chili that used to be a weekly family staple. A favourite meal is now ground beef with taco seasoning with taco shells made out of cheese melted on parchment paper in the oven and garnished with sour cream.
“I try to keep it interesting and fun for the kids, and give them choice in what we eat. That makes it go better.” Brandon’s older sister likes to bake, so she has been experimenting with different keto breads and baked-goods recipes from Diet Doctor and other sites.
Each morning Krissy makes sure to give Brandon, a “keto shake” with exogenous ketones — made of MCT oil, heavy cream, and almond milk all blended together. Sometimes she includes protein powder, cocoa powder or fresh berries. On cold mornings she will warm it like a hot chocolate. On hot mornings she serves it to him cold, like a milkshake.And the results have been amazing: the symptoms of all three of his conditions rapidly improved. His tics are now very rare and he is calm, focused and doing well in school. His OCD, which compelled him to keep every action and movement even and equal — such as high fives with both hands, a watch on both wrists — has relaxed.
“The ketogenic diet is the only thing that gives him relief. While it is not a cure, it helps manage all of his major symptoms,” said his mother.
Brandon wants his experience to help others
Krissy shared dramatic footage, seen here, of Brandon’s exhausting tics prior to going on the ketogenic diet, and then a calm and tic-free Brandon doing a bible reading at their church after being on the ketogenic diet.
“It is really important to Brandon that I share this information in case others can benefit from our experience,” says Krissy who notes that the diet has actually helped the whole family. Her husband has now lost 100 lbs (45 kg) in a year and she has not only lost weight, too, but her fibromyalgia and chronic fatigue are now much better. Both Brandon and his sister have lost excess body fat and are now at ideal weights for their age and size.
A huge relief to all of them is that Brandon’s distressing suicidal thoughts are gone, too.”We don’t have that issue anymore. I feel like the diet has been life-saving in so many ways. I feel like I have my son back.”Brandon is so committed to the diet now that even when his mom says he can have at special occasions a piece of wedding cake or another treat, he refuses. “He knows how bad it makes him feel.” When they did try, as tests, introducing low-glycemic fruit (watermelon), gluten-free pasta and sugar-free ice cream back into his diet at various time, his tics, OCD and ADHD were back within a few hours. “When he had the sugar-free ice cream, Halo-Top, his tics just went crazy. We are never going back to the standard American diet. We are keto for life.”
Other parents respond
Nicolas Lorente, of Munich, Germany has seen distinct improvement in his son’s autism and epilepsy. He and his wife Deni put their 6-year old son, Angel, on the diet a year ago when he started having repeated seizures that were not controlled by medication. Angel’s autism was diagnosed at age 2 and his epilepsy at age 5. He has a genetic mutation called a SCN2a mutation, which is known to impact the sodium ion channels that regulate the conduction of nerve signals, and is linked to autism and epilepsy.
It has been known for almost 100 years that the ketogenic diet is a powerful and positive treatment for epilepsy, and Angel’s epilepsy seizures have reduced in frequency and they have been able to stop one of his two seizure medications. But it is the changes in his autism symptoms that have the Lorente family most encouraged. “He is calm, more concentrated, more present. We think he understands more,” said his dad, who is blogging about their son’s progress.
The popular documentary The Magic Pill follows, among seven subjects, two children with epilepsy and autism as their families convert from a high-carbohydrate processed-food diet to a low-carb, unprocessed ketogenic diet. Viewers watch as the children’s behaviour and symptoms dramatically improve over the course of a few months. Medical authorities, however, such as the head of the Australian Medical Association have slammed the documentary, and the diet, as being “patently ridiculous” and “harmful.”
Peggy Holloway, of Nebraska, is convinced that her son’s ADHD symptoms are greatly improved by low-carb ketogenic eating and worsened specifically with sugar, junk food, processed foods, and red food dyes. She shared his struggles in school, and in life, that at times were so bad “we feared he might not survive his adolescence.” Fortunately, about a decade ago she and her son both discovered low-carb high-fat eating and both have had dramatic health improvements. Now age 29, her son’s positive experience with the diet is the primary driver that has him now pursuing a career in nutrition counselling.
“The conclusion of our story is that if any family is dealing with a child with ADHD, please, please, at least give a low-carb diet a trial. There is nothing to lose and if it benefits the child the family may avoid all the heartache we suffered,” says Peggy.
Research revealing multiple avenues of impact
Anecdotal evidence like these families stories are inspiring, but what is the research base for putting children with developmental, behavioral, or neurologic conditions on a ketogenic diet?
When it comes to epilepsy, the research is vast and ever-expanding. In fact, more than 1300 scientific articles have been published in medical journals over the last 90 years about epilepsy and the ketogenic diet. It is not yet exactly clear why it works for epilepsy, but it is now well established that it is an effective treatment for seizure control.“When scientists began to try to understand how the diet works to control seizures, they uncovered some mechanisms and findings that potentially make it relevant to other neurological diseases,” says Dr. Jong Rho, a world-leading pediatric neurologist, researcher, and expert in ketogenic therapies for pediatric neurologic conditions. Located in Calgary, Canada, Dr. Rho, and his research team, now have more than 115 different published medical articles — some basic laboratory research with animal models as well as clinical studies — that are investigating ketogenic mechanisms in epilepsy as well as in other childhood developmental issues, such as autism.
Dr. Rho notes in videotaped interviews here and here that while the exact action of the ketogenic diet is not completely understood, there are a number of reasons why the ketogenic diet may be effective for better brain function in children with neurologic conditions (which applies equally to brain health in adults.) The ketogenic diet’s impacts include:
- The breakdown of fat to ketones provides the energy-hungry brain with an alternate energy source, other than glucose, that is actually more efficient, and produces less oxidative stress.
- It is neuroprotective, preventing or lessoning neuronal injury or cell death.
- It is anti-inflammatory, and inflammation has emerged a risk factor for not only seizures but other chronic diseases.
- It has epigenetic impacts that inhibits the expression of some genes linked to neurologic problems and moderates the expression of some proteins and enzymes.
- It alters the microbiome of the gut, which may in turn impact the cross-talk between the gut and the brain, which has been linked particularly to autism spectrum disorders.
- It impacts various nerve ion channels that improves the transmission of nerve cell signals.
- It promotes homeostasis — essentially restoring physiologic balance and equilibrium in both cellular and systems processes. For example, if nerve cells are firing too much, it dampens them down; if cells are firing too little it ramps them up.
“There are so many intersecting and potentially synergistic mechanisms that you can’t parse out just one target or one key element,” says Dr. Rho, whose 2018 paper in Neuropharmacology summarized the new findings that ketones may have multiple impacts. “It could be a combination of things working together to produce the beneficial effect. But more and more we are showing in the laboratory and in clinical studies that we can render significant benefits just by changing the diet. It is really powerful.”
A 2017 paper in the journal Neurochemistry, in a similar vein, summarized what is known about ketones and the brain: they enhance mitochondrial respiration(energy production), increase neuronal growth factors, strengthen the signal sent between synapses, reduce brain inflammation, and reduce oxidative stress. These effects, the paper noted, then seem to have downstream implications for a wide range of brain functional pathways.
The Charlie Foundation, which was established in 1994 to help support parents doing the ketogenic diet for epilepsy control, now provides support for parents who want to do the diet for children with a wide array of neurologic conditions. They offer five variations on the keto diet, which differ in the ratio of fat to protein and carbs. The five variations can help families fine-tune the diet in a way that works best for them and their child.
Promising published case studies and clinical trials for autism
In recent years there have been promising cases reports and preliminary clinical trials in the medical literature, detailing significant improvements of children put on the ketogenic diet for autism specifically.
- A 2013 report in the Journal of Child Neurology described the case of a girl with severe autism since the age of 4, who developed epileptic seizures at puberty. Placed on a dairy-free ketogenic diet for seizure control, over the course of several years on the diet, not only was she seizure free, but her behaviour and IQ improved so much that she progressed on cognitive testing to be deemed “non-autistic.” Moreover, morbid obesity as well as life-long gastro-intestinal issues resolved.
- A 2017 report Metabolic Brain Disease described a clinical trial in Egypt in which 45 children, aged 3 to 8, with diagnosed autism spectrum disorder, were placed for six months on one of three diets: 15 on a ketogenic diet; 15 on a gluten-free casein-free (dairy free – GFCF) diet, and 15 on a well-balanced standard diet as a control. Children on both the ketogenic diet and the GFCF diet showed significant improvement in core features of the autism spectrum disorder, but those on the ketogenic diet had the greatest improvement in social functioning and cognitive abilities.
- An April 2018 report in the journal Metabolic Brain Disease described the case of a six year old boy with autism and ADHD in Poland who was shown on a PET (positron emission tomography) brain scan to have a low uptake of glucose in his brain. He was placed on the ketogenic diet and within a month showed a marked improvement in hyperactivity, attention span, communication skills, fear, anxiety and emotional reactions, and adaptability to change.
- A May 2018 report in the journal Physiology & Behaviour described a clinical trial in which families of 46 children in Hawaii, aged 2 to 17 years of age, were educated on the ketogenic diet. Some families dropped out, but 15 of them followed the diet, with supplemental MCT oil, for three months and saw statistically significant improvement in core symptoms of autism. Ten of the subjects continued on the diet for six months and the improvements were maintained. The authors stressed that the ketogenic diet plus MCT oil is a potentially beneficial diet treatment to improve the core features of autism but it needs more long term investigation.
Dr. Julie Buckley, a Florida-based pediatrician who has written a book about healing autistic children with diet, feels we know enough to recommend ketogenic eating to help any child with neurologic, developmental, or behavioural issues.
“I recommend the dairy-free ketogenic diet for every family with a child on the autism spectrum. I really think there is no reason not to try,” says Dr. Buckley.
Buckley is one of the authors of the 2013 case study, noted above, and she put her own daughter with autism on a dairy-free ketogenic diet, with great results. Her daughter is now 19 and while still on the autism spectrum she is very high functioning with a very high IQ.
Buckley also gives her daughter a methyl folate supplement to deal with her MTHFR deficiency. MTHFR — methylenetetrahydrofolate reductase — is a gene that creates a special enzyme involved in the complex process of folate metabolism, breaking down folate and folic acid to be used in cellular processes. Some studies show that children on the autism spectrum may be deficient in MTHFR. A folate supplement, called 5-MTHL (L-Methylfolate) is available in health food stores that, supposedly, is easier to break down for those with MTHFR deficiencies. This advice is still controversial but Buckley says she recommends the supplement, along with the ketogenic diet to all her families with children with autism.Do all children with cognitive, behavioural or neurologic conditions respond to the ketogenic diet? Buckley says that, alas, it is clear that not all do. But families only know if their child will respond by trying.
An increasing number of families need this information. In the last week of April, 2018, the US Center for Disease Control announced that its surveillance network had found that now 1 in every 59 children is diagnosed in the autism spectrum, up 15 per cent from just two years ago and up more than 200 per cent over the last decade. In 2004, just 1 in 166 children were diagnosed with autism spectrum disorder.
Buckley is dismayed that in this day and age it is still seen as being controversial to put a child with autism, or any other neurologic, cognitive or behavioral issue, on a ketogenic diet.
“No one should be eating the terrible diets that we eat today. I am absolutely certain that all children, whether or not they have autism, or another condition, will see their health improve if they stop eating the crappy diets of today — if they don’t eat sugar and processed food, if they eat lots of healthy fats and are well nourished! The fact that this is still seen as being controversial among physicians and as needing more investigation astounds me!”
The parents who contacted Diet Doctor about their own children would agree.
“People say keto is so hard. But it is not. And I would fly to the moon to help my children, so why wouldn’t I try feeding Brandon a special diet?” said Krissy Nusky. “And if this information can help just one other child, it is worth sharing our story.”
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