Diet and Nurients
Are There any Good Diet, Nutrients and Supplements for mTOR?
Without intervention, many SKS are hungry all the time. Overactive mTOR causes overgrowth, so I think that makes them hungry. But more of some foods activate normal mTOR and most likely mutated mTOR, too. I didn't want to create a bad cycle, and decided to study what diet may be good for Elizabeth. She's doing better since I started it in early 2021.
(**When mTOR is overactivated, we want to normalize it, but we don't want to make it too low either. The problem is that there aren't any biomarkers to measure and know how much intervention is good and many patients are non-verbal. Therefore, how much to intervene depends heavily on caretakers' observation, which is not always reliable and needs more research.)
2. Diet and Nutrients
In January 2001, came up with this diet, hoping to keep mTOR activities as low as possible. It's an extreme diet, so I can do it only with medical professionals' help, and I introduced it gradually. I also ask doctors to check blood tests periodically. In simple words, my mTOR diet made for Elizabeth is a diet with low-glucose index, lots of fat, minimum protein and minimum seeds. It's mainly avocado, fruits, vegetables, and healthy oil, supplemented by vitamins, and more avocado. Here is the detail:
1. Find a Medical Professional to Monitor the Diet:
There isn't any proven "Diet for SKS established, so dietitians have limitations within the specific diet ordered by a doctor. After several days of mishaps, I found that a dietitian familiar with mTOR is sports dietitians/nutritionist. Their job is to increase athlete's mTOR to increase their muscle, so I asked her to do the opposite. Sometimes, your doctor orders low-glucose or Ketogenic diet, which require educating caretakers first, Dietitians' consultation is sometimes limited within such diet orders. I explained that I need a special diet for a rare disease and asked her to give me the minimum and maximum I can try for a normal healthy children.
(***Everyone is different, so please consult with a professional to find what 's good for your child, especially glucose level for epilepsy patients.) (Related article: How to find a professional, coming later)
2. Limit mTOR Activators
In test tube study, restricting known mTOR activators didn't stop SKS's mutated mTOR from being over-active, ( Test Tube study, citation coming),but I decided not to give any known mTOR activators to Elizabeth more than necessary.
Minimize Glucose, Leucine, Methionine and Arginine
These are known mTOR activators, but then what should I cook for Elizabeth? My strategy is a low glucose-index and low protein diet. Ketogenetic diet is difficult, so I started with low glucose-index diet. I learned that all good proteins from animals, dairies, vegetables, seeds, non-dairy milk made of seeds have those amino acids, so in January 2021, I first compared food data in spreadsheet to see which food has less of these amino acids for each gram of protein. The least bad protein is avocado and the second bad was lentil. Soy and seeds are as bad as animal and dairies. (My data will be posted later.)Among the three amino acids, Leucine is the first to avoid. (Dr. David Sabatini) and I found that Methionine and Arginine are almost always high in Leucine-rich food, so I focus on minimizing Carbohydrates and Leucine-rich food. Leucine is water soluble and seeps into soup, sauce, and non-dairy milk made of seeds, but not into oil. I still give all of above, but I just limit the amount.
Limit the amount low through the day but keep a good variety. The mTOR activation is proportional to the concentration level of mTOR activating nutrients. (Dr. David Sabatini's test tube study, Citation coming). So I think keeping the level low and steady is more important than limiting the total intake of the day. For carbohydrates, This means that I want low glucose index food. Such food helps the blood glucose level raise slowly and come down slowly. I also try lowering the glucose index of high-carbohydrate food by mixing oil and fiber. (Ex. cook rice with hydrated agar-agar, served with healthy oil or inulin) She gets small portion of meals/snacks often than 3 big meals.
3. Natural mTOR inhibitors in Food
A various Phytochemicals and Flavonoids in fruits, vegetables and spices are found to inhibit mTOR in test tubes, which are often studied for "normal" mTOR. To affect over-active "mutated" mTOR, a diet might not be enough. For example, to achieve what's observed in a test tube study, you might need to eat a bucketful of celery a day for example, (Citation coming soon) but it's not that bad at all for some other foods.
So I give a variety of fruits, vegetables, spices and herbs. If they are safe and healthy, why not?
I also give Elizabeth well-washed skins of fruits and vegetable if they are organic because they tend to be rich in those phytochemicals and flavonoids.
*The only draw back is that they tend to be high in Oxalic Acids. OA causes stones in urinary tract and it might not be good for autism. If vegetables are taken with Calcium, OA is neutralized, but her blood test result was very high because she is intolerant to dairy. I give Calcium Citrate together to solve it.
To supplement calories that are missing from the diet, I give healthy oil, especially MCT coconut oil with high Capric acid (C-10) content. I give her the MCT oil each meal/snack, and other oil daily. Other healthy oil includes olive oil and fish oil, Oil made of seeds, such sesame, peanut, sunflower is free of the mTOR activating amino acids.
* Warning: Capric acid in MCT coconut oil might work in a similar way as Valproic acid does. It possibly does the anti-seizure work of Ketogenetic diet independently from actual Ketogenetic diet, (Citation later). So, anyone taking Valproic acid needs to consult medical professionals and ask the maximum capric acids you can take to avoid any side effects such as liver damage in a long term.
Add What's Missing in the mTOR Diet:
By eliminating certain foods, you might be eliminating some good things, too. What's missing need to be added by food or supplements. Elizabeth's mTOR diet is low on Vitamin Bs, Calcium, Iron and Iodine, for example. So I choose these protein to help with the vitamins: Chicken liver, whole baby anchovies, and pork. For iodine, I give her kelp or replace salt with iodized salt
When I reduced carbs and sprouted brown rice from her diet, I thought of what I reduced besides carbs. She probably lost some vitamins and GABA, so I add back brown rice bran.
Vitamin for SKS:
Special needs, and patients with Autism or sleep issues sometimes have deficiencies in certain nutrients and vitamins, regardless of what they eat. They seem incapable of utilizing certain things, and supplementing them might help them.
-Vitamin D3: Elizabeth has low Vitamin Ds for example and needs double of daily recommendation to have a normal blood test result. (Maybe she needs a lot of Vitamin D because it inhibits normal mTORC1 through AMPK signaling pathways.)
-Iron: Her sleep doctor said iron is often lacking for people with sleep issues.(Citation coming)
-P5P form of Vitamin B6: Her epilepsy doctor recommends B6 to minimize the side effects of the epilepsy medicine Elizabeth is taking, but her metabolism of B6 is strange, and what's fine for other children seems too high for her. Her blood test is way above normal range max . (double or triple) I'm currently reducing it, and it seemed to reduce her stimming.
Side Effects, Dose, and Breaks
Vitamin supplements are often sold in large dose, but too much is not good, either. Even vitamin Cs and Bs can cause side effect if they are given too much. So I always check information on side effects for any supplements. I ask her doctors to monitor her blood tests periodically and we review dose. Also, on some weekends, I give her break from some of the vitamins, except the ones she takes for epilepsy control.
Supplement Forms and Brands
I try choosing the most bio-available forms because I don't know where in the metabolism process she has issues to have the deficiency,. For example, I give her D3 instead of D2, and P5P form for Vitamin B6.
I also choose the best timing for vitamins. Some exit our body quickly and better be divided and given often. I give Elizabeth Vitamin B12 in AM and avoid bed time because they can overstimulate her.
6. Digestive Enzymes
Digestive Enzyme at each meal is a must for Elizabeth. Please see the next section, Neuro-Gut Relationship.
Summary of mTOR Diet for Elizabeth
*Please consult with a professional to find good balance for your child's age, activity level, and epilepsy status.
Low Glucose and Low Glycemic Index Diet
Minimize Any Protein (Animal Protein, Soy, and Dairy) and animal based broth to minimize Leucine, Methionine and Arginine. The least bad protein seems Avocado, and then the second is Lentil. (My analysis chart coming later.)
Minimize Nuts and Seeds. ( but nut and seed oil are ok.).
Lots of fruits and vegetables (for a tiny bit of natural mTOR inhibitors, just in case.)
Supplement calorie with healthy fat and oil*.(Oils: Olive, Flax seed, Coconut MCT rich with Capric acids(C10), avocado, perilla, fish oil ) ***The Capric acid (C10) is not to be confused with Caprylic acids (C8). "MCT oil" usually has higher Capric acids (C10) than "Liquid coconut oil" that has more C12.
Supplement missing vitamins such as Calcium, iron, Vitamin Bs, iodine, with food and vitamin pills.
Supplement what's good for epilepsy
Give Calcium Citrate together with fruits and vegetables (To neutralize Oxalic Acids)
Digestive Enzyme at each meal and good mix of probiotics and prebiotics.