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
My Strategy for mTOR Diet
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 for some 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 don't want to feed mTOR activators to Elizabeth more than necessary.
Things that activate normal and mutated mTOR are Glucose, Leucine, Methionine and Arginine.... the higher the concentration, the more active mTOR becomes in test tube studies.(*Citation later) So, I wonder the concentration matters more than the total intake of the day. I decided to try keeping their serum concentration as low as possible through the day and night. My strategy for the mTOR diet translates to a low carb and low protein diet, that is extreme enough to require professional's help, especially for growing children and people with seizures.
I was blessed to have an mTOR specialist helping me, but it wasn't easy to find the right dietitian. After consulting with a dietitian, who is familiar with mTOR (sports dietitian, for example) , here is a diet plan I made up for Elizabeth: (***Everyone is different, so please consult with a professional to find what 's good for your child, especially glucose level.) (Related article: How to find a professional, coming later)
Low Glucose and Low Glycemic Index Diet (Ask professional for proper amount)
Minimize Any Protein (Animal Protein, Soy, and Dairy) ( to minimize Leucine, Methionine and Arginine).
The least bad protein seems Avocado, and then Lentil the second. (My analysis chart coming later.)
Minimize Nuts, Seeds, and Dairy,( 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, 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)
* Capric acid in MCT coconut oil might work in a similar way as Valproic acid does, possiblly independently from Ketogenetic diet, (Citation later), so any one taking Valproic acid needs to consult with medical professionals to assess how much capric acids you can take to avoid any side effects such as liver damage.
For Elizabeth's age and activity level, it basically means a vegetarian diet with avocado as main food, withl low glucose mainly from fruits and vegetables, 1-2 table spoons of animal protein or soy product a day, with healthy oils, especially MCT coconut oil with high Capric acid (C-10) content .
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..