This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Wednesday, September 1, 2021

Frozen Desserts (recipes)

 Fudgsicles

1 14 oz can coconut cream
2T cocoa powder
2T maple syrup (or more to taste)
1 tsp vanilla extract (or other flavor such as mint)
a pinch of salt
3-4 oz chopped baking chocolate 

 Combine ingredients in a saucepan and heat on low until melted and blended.

Freeze in popsicle molds or ice cube trays.

Gelato

1 14 oz can coconut milk or cream
5 egg yolks
2-4 T honey or other sweetener
Optional- 1/4 c cocoa powder, 1 tsp vanilla or other extract, 1 tsp espresso powder, caramel)

Heat coconut milk/cream and sweetener of choice to just simmering.

Lightly beat egg yolks.  Temper with the hot milk mixture by slowly pouring a small amouont of the hot liquid into the eggs while whisking, then pour the egg mixture into the hot milk while whisking to avoid scrambling the egg yolks.

Cook just below the point of simmering, stirring continuously, for 8-10 minutes, until the mixture forms a thick custard.  

Remove from heat, add additional flavors, and let cool.  

Once cooled the custard can be frozen with an ice cream machine or kept in the fridge as "refrigerator ice cream" for those who are sensitive to cold foods.







Friday, August 13, 2021

Electrolytes

Electrolytes are minerals that dissolve in water and allow it to conduct electricity.  These minerals include sodium, potassium, magnesium, calcium, and chloride.  Potassium is the one that we need the most of by far- 4 to 5 grams per day.  Cells have an enzyme on their surface called the sodium potassium pump which provides energy for cellular functions and these pumps require a lot of potassium to function properly.  One-third of the energy from the food we eat goes to power these pumps.  If these pumps aren't working well, muscle cells can't get enough calcium in to relax the muscle and this causes muscle cramps.  Nerve cells need these pumps for the energy to pass signals along.  These pumps regulate fluid levels in the body so if they are not working well it can cause dehydration.  

Common symptoms of potassium deficiency include- general fatigue, muscle fatigue and weakness, muscle cramping, heart arrhythmia and missed beats, fluid retention and edema, constipation, high blood pressure, high insulin levels, anxiety, insomnia, and inadequate stomach acid (which is needed to absorb minerals).  Inadequate dietary intake of potassium is a common cause of potassium deficiency.  Other causes include vomiting, diarrhea, diuretics, some blood pressure medications, alcohol consumption, surgery (from the stress of the surgery), emotional stress (stress on adrenals creates loss of potassium through urine), and drinking too much water (Hypotremia) because it dilutes electrolytes.  Excessive sugar in the diet can also lead to a potassium deficiency because it can lead to insulin resistance, and insulin is needed for cells to absorb nutrients in general (this means that people with diabetes can sometimes reduce their need for insulin by increasing intake of potassium).  

Approx 98% of the potassium in the body is in the cells so a deficiency has to be extreme before it shows up on blood tests.  There is an intracellular test that is more accurate but it is not widely known about.  

Sodium and potassium are inversely related.  The primary source of sodium in the Standard American Diet is fast food and restaurant food (also processed foods).  There is no RDA for potassium.  Americans are generally encouraged to get between 4 and 5 grams per day.  Fruits, vegetables, and some fish are the best natural sources of potassium.

Potassium and sodium levels need to be in balance.  The body tends to hold on to salt more than it holds on to potassium.  Potassium functions as the "relaxer"; it lowers blood pressure by getting rid of excess sodium.  Potassium is needed to metabolize and make proteins (especially connective tissue), stabilizes blood sugar and reduces cravings, helps cardiac function and reduces arrhythmia and palpitations, helps sleep.  We need about 1000mg sodium and more like 4.7g of potassium (ratio of about 1 to 4) every day.  High fat and low carb diets such as Keto can cause potassium to get low, so it's important to eat enough vegetables and fruits to meet the higher potassium needs when following those diets. 

POTASSIUM CONTENT OF COMMON FOODS-
 
Baked potato with skin on                            950mg potassium in 6oz/170g
Orange sweet potatoes                                  840mg potassium in 6oz/170g
Beet root                                                       230mg potassium in 2.5oz/70g
Beet greens                                                   655mg potassium in 1/2 cup/2.5oz/70g
Avocado                                                        490mg potassium in 100g (half of one medium avocado)
Halibut                                                          490mg potassium in 4oz/113g
Swiss chard                                                   960mg/cup
Lentil soup                                                    460mg potassium in 1 cup/240ml
Spinach                                                         830mg/cup
Winter squash                                               900mg/cup
Banana                                                          420mg potassium in 1 medium fruit/120g
Tomato sauce                                                420mg potassium in 1/2 cup/120ml
Salmon                                                          435mg potassium in 4oz/113g
Tilapia                                                           430mg potassium in 4oz/113g
Split pea soup (made with potatoes)             390mg potassium in 1 cup/240ml
Green peas                                                    350mg potassium in 1 cup/140g
Black beans                                                  305mg potassium in 1/2 cup/85g
Tomatoes                                                      290mg potassium in one medium tomato/120g
Peanuts (dry roasted)                                    280mg potassium in 1.5oz/34g
Oranges                                                        230mg potassium in 1 medium orange/130g
Orange juice                                                 250mg potassium in 4oz/120ml
Peanut butter                                                210mg potassium in 2 tablespoons/30ml/32g
Carrots (raw)                                                205mg potassium in 1/2 cup/65g


Thursday, July 8, 2021

Favorite Ways to Cook Eggs

Soft Boiled Eggs
Deviled Eggs
Scotch Eggs

Tiger Skin Eggs

 Cut small slits on the sides of hard-boiled eggs and then deep fry them, then they can be cooked in a dish with a lot of sauce.

Egg Mayo (Oeuf Mayo)


Tuesday, June 15, 2021

Mito Cocktail (Treatment for mitochondrial disease and dysfunction)

There have been very few options available for treating and managing mitochondrial disease and dysfunction (both of which are referred to as "mito").  As a result, this is one area of conventional medicine in which the value of nutritional supplements has been accepted and embraced.  People with mito usually take a custom blend of supplements every day that is refereed to as a "mito cocktail".   Many people try various combinations of these vitamins and supplements on themselves to see what helps, especially those with mito dysfunction (which is generally acquired from toxic injury, is generally much more mild, and much harder to find a doctor willing or able to treat).  There are some general guidelines and some basic components that are safe, so it is possible to go about it this way, but the doses of the components may need to be very high and it can be very hard for individuals to get the doses and combination right for their needs.  However, since so few people have access to doctors to treat mito, this is the best that many people can do.   Once a good "cocktail" is developed for a patient they may choose to have it compounded, which can make the cocktail much easier to take (especially if 
it includes many different components).

The Mito cocktail explained from Mito Action 

Diagnosis and management of patients with mitochondrial disease  (specifically table 2

Letter explaining importance and cost benefit of mito cocktail


The Effect of Mitochondrial Supplements on Mitochondrial Activity in Children with Autism Spectrum Disorder


The Basic Components:

Many people include Alpha Lipoic Acid (ALA) in the mito cocktail, and while it is supportive of mito function it is also a powerful chelator of mercury, lead, and other toxic metals and can cross the blood-brain-barrier so if there is a body burden of toxic metals it can push those metals into the brain.  Use this with caution if metal toxicity is known or suspected.

Antioxidants - these are plant chemicals that protect the mitochondria from damage caused by oxidative stress.  Oxidative stress produces "free radicals" as a byproduct of energy production which can harm cells.  More on what free radicals are from the NIH site Office of Dietary Supplements:

"An atom or molecule made in the body that can damage cells. A free radical has at least one unpaired electron, which makes it unstable. To become stable, the free radical takes an electron away from another atom, which makes that atom unstable, and starts a chain reaction that can injure cells. Free radicals are made during chemical changes that take place in a cell or an organism to produce energy and basic materials needed for important life processes (metabolism). They also come from tobacco smoke, pollution, radiation from the sun and x-rays, and other sources outside the body. Free radicals damage cells, cause genetic alterations (mutations), and may play a role in cancer, heart disease, and age-related diseases (such as Alzheimer's, Parkinson's, and Lou Gehrig's diseases). Free radicals are also beneficial; they are involved in killing germs (microorganisms) and they help hormones and chemical messengers communicate with cells. Proteins (enzymes) made by the body, and vitamin C, vitamin E, and beta carotene in the diet help prevent free radical damage."

Arginine - is another amino acid that can be very helpful for some people with mito, especially the form called MELAS which involves stroke-like episodes.   Arginine usually needs to be taken in very high doses.  Arginine and another amino acid Lysine need to be consumed in balance for those who have chronic problems with herpes viruses (this includes cold sores, genital herpes, chicken pox/shingles, Epstein-Barr, Cytomegalovirus, and HHV6). 

B vitamins - the B vitamins, especially thiamine (B1) and Riboflavin (B2) are cofactors needed for the electron transport chain to function.  Riboflavin (B2) has shown to be particularly helpful for people with headaches and migraines.

Folic Acid and Folate -  (often considered to be a B vitamin) is also important. 

L-Carnitine - is an amino acid that helps to transport fat into the mitochondria so that it can be burned for fuel.  This amino acid is very common in the diet so there is rarely a deficiency, however high doses can be quite therapeutic for people with mito.  If buying this as a supplement, the acetyl-l-carnitine is usually the preferred form, however the levocarnitine form is often considered best and is available by prescription. 

CoQ10 - this is an antioxidant found in almost all cells in the body.  It plays an important role in transporting one of the important pieces of the electron transport chain, which is the machinery in the mitochondria that converts food and oxygen into energy that our bodies can use (ATP).  It is much better absorbed if taken with an oil or fat-containing food.  More on CoQ10 can be found here at the University of Maryland Medical Center site, although this information is more general and not about mito specifically. 

D-Ribose - is a sugar that feeds the mitochondria.
Enhancing Mitochondrial Function With D-Ribose

D-Ribose Helps People with Fibromyalgia and Chronic Fatigue Syndrome (CFS)
"D-Ribose is a naturally occurring simple sugar found in all living cells. It is the fuel that mitochondria use to produce adenosine tri-phosphate (ATP), which provides the body’s cellular energy. Studies show that patients with fibromyalgia, chronic fatigue syndrome (CFS) and congestive heart failure are low in D-Ribose."
 
Melatonin - is an antioxidant that can enter the mitochondria and protect them from oxidative stress, apoptosis, and impaired function (energy production).  
 
melatonin to reverse mito dysfunction
"These Alzheimer's mice have extensive mitochondrial dysfunction, which likely contributes to their cognitive decline. To further explore the mechanism through which caffeine and melatonin protect cognitive function in these mice, we monitored the function of isolated mitochondria from APP(sw) mice treated with caffeine, melatonin, or both in their drinking water for one month. Melatonin treatment yielded a near complete restoration of mitochondrial function in assays of respiratory rate, membrane potential, reactive oxygen species production, and ATP levels. Caffeine treatment by itself yielded a small increase in mitochondrial function. However, caffeine largely blocked the large enhancement of mitochondrial function provided by melatonin."

"The best-known actions of melatonin, currently supported by experimental and clinical data, include antioxidant and anti-inflammatory abilities, some of them involving genomic regulation of a series of enzymes. Besides, melatonin displays anticonvulsant and antiexcitotoxic properties. Most of the beneficial consequences resulting from melatonin administration may depend on its effects on mitochondrial physiology. The physiological effects of melatonin on normal mitochondria, its role to prevent mitochondrial impairment, energy failure, and apoptosis in oxidatively-damaged mitochondria, and the beneficial effects of the administration of melatonin in experimental and clinical diseases involving mitochondrial dysfunction and cell death, are revised."

PQQ (Pyrroloquinoline quinone) - is an anti-oxidant and actually leads to growth of new mitochondria.  It supports metabolism and stress tolerance in bacteria, generally believed to be the ancestors of mitochondria.
 
Selenium - is a potent antioxidant

Zinc

Additional Nutrients That Support Mito Function -

Manganese -  is an essential element needed for healthy bones, wound-healing, and the metabolism of proteins, cholesterol and carbohydrates. Manganese levels affect the levels of iron, magnesium and calcium in the body.  Manganese is an essential part of the primary anti-oxidant in the mitochondria.  
 
Molybdenum -  Molybdenum is a cofactor for the mitochondrial enzyme mitochondrial amidoxime reducing component (mARC).  This enzyme has only been discovered fairly recently and it's functions are not well understood yet.  It is thought to play an important role in prodrug metabolism, the detoxification of certain mutagenic bases, and the reduction of nitrite to nitric oxide.

Vitamin K - can increase availability of energy to mitochondria during exercise.
 



I will say that others at the conference (including posters) uniformly suggested 200 mgs/kg/day on the arginine. That is a HUGE amount.

The optimum dosage is approximately 300-350 mg calcium as calcium citrate for a total of 1000 mg (one gram) of calcium a day. If you’re taking this you don’t need additional sources of calcium. An even better approach would be to use magnesium citrate. The adult dosage is about 300-400 mg a day. Some practitioners recommend up to 1000 mg but many people report problems with diarrhea if they exceed 400 mg. Again, a divided dose would be best, taking the magnesium citrate with each meal.

As an example, this formulation was made for a 3yo child:
CoQ10 180 mg,
Vit. E 450 iu,
Vit C 720 mg,
Carnitine 900 mg,
ALA 180 mg,
Biotin 2 mg,
Pantothenate 135 mg.

General Supplement Notes

Favorite resources for information:

Linus Pauling Institute Micronutrient Information Center

NIH office of dietary supplements

Examine.com 

Dictionary of Dietary Supplement Terms (from NIH site)

Nourishing Hope (Site for Julie Matthews, a nutritionist who specializes in using nutrition to heal health conditions, particularly neurological ones such as autism, ADHD, anxiety, OCD, etc).

Favorite Sites for Ordering:

PureBulk Supplements

Mountain Rose Herbs

Nootropics Depot 

VitaCost (frequent sales, Cheap "house" brand, very large selection)

Favorite Brands:

North American Herb and Spice

Enzymedica

Eidon liquid minerals in low-dose but highly absorbed ionic form.

Trace Minerals

Supplements for Specific Needs/Disorders:

Supplements for Connective Tissue Support - Vitamin E, Collagen, Chondroitin sulfate, Glucosamine, D-Ribose, Arginine, Adrenal cortex, Vitamin C, Vitamin D, Vitamin K, Silica,
Aloe Vera juice.

Supplements to Treat Pyrroluria - Vitamin B6 (majority in P5P activated form), zinc, manganese.

Nutrients for muscle growth- amino acids, potassium, trace minerals, vitamin A (and other fat soluble vitamins), and vitamin C. 

Combination Supplements:

NeuroProtek FAQs

Coromega 

BrainChild Nutritionals

SPEAK

 Potential Future Supplements:

Charlotte's Web Hemp Oil 

Parasym Plus 

Agmatine (a metabolite of arginine)

"It shows promise for alleviating neuropathic pain and drug addiction and shows some potential in protecting against strokes and benefiting cognitive health."






The Issue of Lipid (Fat) Sources for TPN (IV nutrition)

My Notes for More on Lipids (Oley 2016 conference)

This is a presentation by Kara Caulkins, MD, MS from the 2016 Oley conference.  She is a neonatologist and is presenting about the options for IV/TPN lipids in the US as well as their hepatotoxicity (harm to the liver).  She is specifically talking about children, however much of this information can be generalized to adults, but there may be some differences that are significant.  This is also an insurance issue as some of the lipid options are FDA approved for adults but not children.

TPN is composed of sugar, amino acids, vitamins and minerals, and lipids (fats).  The lipids are an important component and provide a dense source of calories as well as essential fatty acids (EFAs) which are nutritionally necessary.  EFAs are important for making hormones including anti-inflammatory ones (EFA deficiency can occur with people on TPN, which can lead to neurodevelopmental problems in children as well as vision problems).  Long-term use of TPN (they think especially due to the lipids) is associated with liver disease and the the development of Intestinal Failure Associated Liver Disease (IFALD) which can progress to liver failure.

The most commonly used lipid source for TPN in the US right now is Intralipid which is entirely soy based.  There are several other brands that are used mostly outside the US but can sometimes be used in the US, particularly on a compassionate use basis.  Omegaven is one of these options and is entirely derived from fish oil.  Another brand called SMOFlipid is a mixture of the two.  A recent study found that for children who had developed IFALD, switching them to fish oil based lipids reversed the liver disease.  This finding has been replicated several times.  In one case children with advanced liver disease had the disease completely reversed within 9 to 12 weeks of being switched to fish oil based lipids from the soy-based ones.

So the question is why are Omegaven and fish oils so helpful.  Fish oil contains high amounts of EPA and DHA, omega-3 EFAs which are anti-inflammatory.  Soybean oil instead has high amounts of omega-6 fatty acids which are pro-inflammatory.  Omegaven also has a high amount of vitamin E which is a powerful anti-oxidant and nutrient.  Fish oil also lacks the phytosterols completely which seems to be the component in Intralipid that causes so much harm to the liver.  At 8:45 into the video there is a graphic showing the composition of specific lipids in both Intralipid and Omegaven.  

Further studies have shown that children switched to fish oil lipid sources have lower levels of inflammation.  Part of why this happens is because of the effects of different oils on the production of cytokines (which are cell-signalling molecules that regulate inflammation).  Specific cytokines have been found to be directly related to the development of biliary problems such as "sludgy bile" and liver and gallstones.  It's also known that long-term consumption of omega-3 EFAs is associated with better health outcomes in general including lower rates of cancer, heart disease, and other major illnesses. 

Different oils can have very different amounts of what are called phytosterols, which are plant-based sterols (similar to cholesterol which is an animal-based sterol).  When food containing phytosterols is consumed orally only a tiny fraction of the phytosterols is absorbed (and easily excreted).  However, if lipids containing phytosterols are infused, this results in a high amount in the blood and is toxic to the liver.  It's been known for decades that for people on IV lipids there is a direct correlation between higher levels of phytosterols in the blood and rising markers of liver disease.  One mechanism of this is that inflammation and phytosterols inhibit the excretion of bile and bilirubin.

Ideally, a lipid source for infusion would have a ratio of types of fatty acids that is balanced (about 2 to 1 omega-3s to omega-6s), as well as little or no phytosterols, and a high amount of a good quality anti-oxidant such as vitamin E.  The vitamin E should be primarily the alpha form of vitamin E (what vitamin E Intralipid has is mostly in the gamma form).  Alpha vitamin E is included in the multivitamin that is added to TPN so that even people on Intralipid do get some of it.

Omegaven is not yet FDA approved so it is only available in the US either on a compassionate use basis or as part of a clinical trial.  Over the last 10 years access to Omegaven has improved somewhat but is still very limited.  There are also several lipid brands that are mostly olive oil or coconut oil which might be an option for patients who are allergic to both soy and fish, and some of these are FDA approved for adults.

Monday, May 17, 2021

Nomato Sauce (Recipe)

 Nomato Sauce (nightshade-free replacement for tomato sauce)

3 T olive oil

1 red onion

1 1/2 c carrots

8 oz beets

15 oz can pumpkin puree (or other squash, or sweet potato)

2 to 3 celery stalks

5 garlic cloves

1 T balsamic vinegar

1 T pomegranate molasses

1/2 tsp thyme

1 T apple cider vinegar

2 tsp onion powder

1/4 tsp garlic powder

1/2 tsp black pepper

salt to taste

-Saute the onion.  Steam or boil the carrots and beets, and squash if necessary.  

-Puree ingredients in food processor.