Diet and Nurients
Are There any Good Diet, Nutrients and Supplements for mTOR?
When mTOR is overactivated, we want to normalize it, but we cannot stop it either because mTOR is essential to many functions of our cells. We need to balance it just right. The problem is that there aren't any biomarkers to know how much is good, therefore all depends on our observation and not always reliable especially when the patient is non-verbal.
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 good diet for Elizabeth. She's doing better since I started it in early 2021.
2. Diet and Nutrients
Our food include natural mTOR inhibitors and activators, which are often studied for "normal" mTOR.
To alter activities level of "mutated" mTOR, a diet might not be enough, but I feel that diet makes a big difference in Elizabeth.
A various Phytochemicals and Flavonoids in fruits, vegetables and spices are found to inhibit mTOR in test tubes. To achieve the same concentration of some of the natural inhibitors as in the test tubes, you need to eat a bucketful of celery for example, but it's not that bad at all for others. And it's good to have lots of various fruits and vegetables anyways.
Restricting mTOR activators didn't stop mutated mTOR from being over-active in test tubes, but I didn't want to feed mTOR activators to Elizabeth more than necessary.
Things that activate mTOR are Glucose, Leucine, Methionine and Arginine. Minimizing them translates to a low carb and low protein diet, which is not easy without professional's help.
With help of a dietitian familiar with mTOR(sports dietitian, for example) , here is a diet plan I made for Elizabeth: (***Everyone is different, so please consult with a professional to find what 's good for your child, especially glucose level..)
Lots of fruits and vegetables (for a tiny bit of natural mTOR inhibitors)
Minimize Animal Protein, Soy, and Dairy ( to minimize Leucine, Methionine and Arginine).
Low Glucose and Low Glycemic Index Diet (Ask professional for proper amount)
Supplement calorie with healthy fat and oil.(Oils: Olive, Flax seed, Coconut MCT, avocado, perilla, fish oil )
Supplement missing vitamins such as Calcium, iron, Vitamin Bs with food and vitamin pills.
Supplement what's good for epilepsy
Give Calcium Citrate together with fruits and vegetables (To neutralize Oxalic Acids)
For Elizabeth's age and activity level, it basically means a vegetarian diet with avocado as main food, with 1-2 table spoons of animal protein or soy product a day, with healthy oils. Minimize Nuts, Seeds, and Dairy,( but nut and seed oil are ok.). There isn't any "Diet for SKS| established, so dietitians have limitations within the specific diet ordered by a doctor. But you can tell that this is a rare disease and look for a dietitian, who is familiar with Amino acids, especially Leucine. Sports dietitians are familiar with increasing the amino acids to activate mTOR for more muscle, and you need to ask for reducing Leucine. Methionine and Arginine usually come together in Leucine-rich food.
Special needs, and ones with Autism or sleep issues sometimes have deficiencies in certain nutrients and vitamins, sometimes regardless of what they eat. They seem incapable of utilizing certain things,
Her sleep doctor said iron is often lacking for people with sleep issues.
Elizabeth has low Vitamin Ds for example and needs double of daily recommendation to have a normal blood test result. (Maybe she consumes a lot of Vitamin D because it inhibits normal mTORC1 through AMPK signaling pathways.)Ask your doctor to identify, supplement, and monitor what your child needs.
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 given often than others. I give Elizabeth Vitamin Bs in am instead of bed time because they can overstimulation.
Vitamin supplements are often sold in large dose. For many years, I didn't know how common vitamins like Vitamin C and Bs can cause various side effects if given too much. It's important to check side effects.
Also, I give her break from some of the daily vitamin routine on some weekends except the ones she takes for epilepsy control..