WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, June 29, 2013

Gluten Free Savory Mushroom Bread Pudding. (corn-lite, gluten-free, dairy-free, nut -free, could be egg free easily)

The one thing that I have learned with making gluten free bread is if it is not eaten the first couple days it becomes hopelessly stale. Which means we often have leftover slices of bread.

From bread crumb cake to making my own stuffing and italian bread crumbs, oh and of course sweet bread pudding I am kind of running out of ways to use stale bread.

A couple months ago I spotted a recipe for Savory Bread Pudding- my knee jerk reaction was "yuck!' but the more I thought about it(and the more stale bread that was stacking up) I decided why not? When I make stuffing for the holidays we all fight for the softest and moistest bits so figured it was worth a try- and so glad I did! Really really tasty.

Mushrooms are a "new" food for Abby. We removed them a couple years ago in the middle of the worst of her symptoms and I have been fearful of adding them back in.. plus, it is one of the few foods I really don't like, I mean really really don't like.. I gag cutting the nasty things! Derek loves them and Abby was wanting to try them. So hopefully they get to stay. Even with my hatred of mushrooms(I admit, I picked the mushrooms out of my serving) this was really delicious- and so easy and it used up a good deal of that stale bread! The recipes I all looked at added 3-5 eggs for the amount of savory bread pudding I made, I used just one, and honestly it would be delicious without any eggs at all! It was crusty on top and mushy underneath, and Abby declared she would rather eat this then stuffing any day! :-)

Aprox 3 cups of cubed stale bread(you can toast if you would like or not. If you toast drizzle with grapeseed oil and toast just till golden)

1 1/2 cup coconut plain yogurt( or dairy if you can-if you use milk instead of yogurt you might want to increase eggs to 3 eggs)
1 1/2 cup water(or chicken broth if you have any, I am out of bone broth right now)
1 egg
1/2 cup fresh sliced mushrooms
1 small finely diced onion

2 tablespoons fresh rosemary
2 tablespoons fresh parsley
1 teaspoon thyme
1 teaspoon marjoram
1/2 to 1 teaspoon salt(depends on broth or water and whether you like more salt, we salt less and allow those who want more to add)
1/2 teaspoon ground pepper
Grapeseed oil

Grease casserole. place bread cubes in casserole. Toss fresh rosemary, fresh parsley,mushrooms and onions with bread cubes. I drizzled a bit of grapeseed oil(just a teaspoon or so) across the top.

In a bowl mix yogurt,egg,water and the rest of herbs,salt and pepper. Pour mixture over bread cubes(the fluid should be halfway at least up the bread crumbs). Cover. Bake for 45 minutes at 350

Friday, June 28, 2013

Sugar is NOT Evil- Why we Gladly Add Sugar to Abby's Diet

What do baby formula,supplemental formula,IV's,and breast milk all have in common?


Did you know that when breast feeding the first bit of breast milk that comes first with each feed is highest in sugar? Then after that is released the higher fat and higher calorie milk is released. The amount of sugar released changes frequently. Recent research indicates that the high sugar content in breast milk actually encourages the right flora in the babies digestive tract.

Sugar in breast milk helps baby

Sugars that occur naturally in breast milk reduce the number of harmful bugs in a baby's stomach, a meeting of experts will hear today.

Tests using an infant formula containing a mixture of the compounds were found to dramatically lower levels of bacteria such as E.coli.

At the same time the sugars - called oligosaccharides - increased the number of friendly bacteria.

They also made the environment in babies' bowels more acidic, which suits "good" bugs but is unhealthy for "bad" bugs.

Natasha Bye, head of scientific affairs at Milupa, the company making the infant formula, said: "In terms of providing a protective line of defence, this is very exciting for us. We have achieved a selective increase of good bacteria and a decrease of the nasty ones."

A total of 90 infants took part in the study conducted in Holland and Germany. One group of babies were fed infant formula containing the "prebiotic" oligosaccharide mixture. The other received a standard preparation.

Later tests showed that between 2.5% and 3% of the gut bacteria carried by the second group were harmful. But in the "prebiotic" group harmful bugs only made up 0.5% of their bacteria.

The research was led by Dr Gunter Boehm at the laboratories of Milupa's Dutch parent company, Numicho, in Friedrichsdorf, Germany, His findings will be presented and discussed at meeting of nutritionists at the British Medical Association in London today.

Prebiotics are so-called because they feed probiotics, the friendly bacteria. Ms Bye said: "Its been known for some time that breast-fed babies have more friendly bacteria in their guts than bottle-fed babies, but we are only now finding out why.

"Oligosaccharides are a kind of carbohydrate, but one that can't be digested by the body. They stay intact until they reach your colon where they are used as food for these friendly bacteria.

"We decided to focus on oligosaccharides because breast milk contains them in large amounts. Along with protein, oligosaccharides are the third biggest component in breast milk.

Did you know your brain needs simple carbs?

How about IV hydration solutions? Yep, they put sugar in that too.

From Austinicc.edu ;

Indications. Dextrose fluids provide calories for energy, sparing body protein and preventing ketosis, which occurs when the body burns fat. They also make it easier for potassium to move from the extracellular to the intracellular compartment. Dextrose fluids flush the kidneys with water, helping them excrete solutes, and improve liver function (glucose is stored in the liver as glycogen).

Concentrations of [D.sub.2.5]W and [D.sub.5]W are used to treat a dehydrated patient and to decrease sodium and potassium levels; they're also suitable diluents for many medications. More concentrated (hypertonic) fluids such as [D.sub.10]W are used to correct hypoglycemia. [D.sub.20]W and [D.sub.50]W with electrolytes can provide long-term nutrition as a part of total parenteral nutrition.

From ehow;

Kinds of Dextrose IV Fluids
By Amber D. Walker, eHow Contributor , last updated June 12, 2013

Kinds of Dextrose IV Fluids
Not all IV fluids are the same. There are three basic major categories, based on which ingredient is the key component: sodium, dextrose and multiple electrolytes. Within each, there are other numerous kinds of IV fluids. Choosing the right category, and then the right type within that, can be a matter of life and death. Not all dextrose IVs can be used for every situation. Some are more suited than others, depending on the problem and the patient. Have a question? Get an answer from a Medical Professional now!
Other People Are Reading
The Effects of Dextrose What Is a Lactated Ringer?
Sugar Water
Dextrose is another name for glucose, a type of sugar; dextrose IVs are sometimes referred to as “sugar water." There are some drawbacks. Prolonged use of sugar water can cause high blood sugar (hyperglycemia). Watch blood glucose levels carefully when using dextrose IVs, especially if the patient is diabetic.

Dextrose IVs contain combinations of dextrose and water, in differing concentrations. Dextrose 2.5%, or D2.5W, is a dextrose IV that contains 2.5 grams of dextrose per 100 ml of water. D2.5W is used to dilute other IV solutions or to supply the patient with water and calories.

Dextrose 5%, also called D5W, can also be used to hydrate the patient or to dilute other IVs and medications. D5W also keeps the body from using up protein and muscle mass by giving it carbohydrates and can decrease sodium and potassium levels. D5W quickly becomes hypotonic, having a lower salt concentration than the blood or other cells in the body, and hence is not used for resuscitation like some other solutions with similar chemical makeup, such as normal saline. It is used as source of free water and to prevent cell dehydration.

D10W and D20W
Dextrose 10% is a more concentrated form of dextrose IV fluid. It’s usually used to counterattack hypoglycemia. D20W can also provide more nutrition to the patient in the long term.

Along with dextrose 20%, it is used for more long-term IVs since it can provide more nutrition to the body. But dextrose IVs used for too long can result in a number of negative side effects. Any dextrose IV therapy can cause hypokalemia (a drop in potassium levels) and hyponatremia, a condition in which there is not enough sodium in the body outside of the cells. This is a very serious condition that can lead to brain damage and death.

Okay so lets take a look at a supplemental formula. Many many Mito patients are prescribed supplemental formula's. Two "common" ones are Neocate and Elecare Jr.

Lets take a look first at the nutritional label of Elecare Jr vanilla:

EleCare® Jr

Nutritionally Complete Amino Acid-Based Medical Food
EleCare Jr is a nutritionally complete amino-acid based medical food for children age 1 year and older who cannot tolerate intact or hydrolyzed protein.
EleCare Jr is for children age 1 year and older and is available in Unflavored or Vanilla
Use under medical supervision.

Vanilla Powder

EleCare Jr Vanilla Powder Institutional / 14.1-oz (400-g) Can / 6 ct

Serving Size: 100 g Powder

Amount Per Serving % DV % RDI
Nutrient Data
Volume, mL:
Protein Equivalent, g: 14.3
Fat, g: 22.7
Carbohydrate, g: 49.3
Linoleic Acid, mg: 3939
Osmolality, mOsm/kg H2O:
Calories: 469
Vitamin A, IU: 1280
Vitamin A, mcg RE: 384
Vitamin D, IU: 281
Vitamin D, mcg: 7.0
Vitamin E, IU: 9.71
Vitamin K, mcg: 60
Thiamin (Vitamin B1), mcg: 985
Riboflavin (Vitamin B2), mcg: 495
Vitamin B6, mcg: 393
Vitamin B12, mcg: 2.0
Niacin, mcg: 7878
Folic Acid (Folacin), mcg: 139
Pantothenic Acid, mcg: 1974
Biotin, mcg: 19.9
Vitamin C (Ascorbic Acid), mg: 42.5
Choline, mg: 140
Inositol, mg: 23.6
Calcium, mg: 543
Phosphorus, mg: 395
Magnesium, mg: 74
Iron, mg: 8.3
Zinc, mg: 5.4
Manganese, mcg: 601
Copper, mcg: 601
Iodine, mcg: 41.6
Selenium, mcg: 12.5
Chromium, mcg: 10.9
Molybdenum, mcg: 12.3
Sodium, mg: 212
Sodium, mEq: 9.2
Potassium, mg: 706
Potassium, mEq: 18.0
Chloride, mg: 281
Chloride, mEq: 7.9

Serving Size: 1 L (prepared at 30 Cal/fl oz)*

Amount Per Serving % DV % RDI
Nutrient Data
Volume, mL: 1000
Protein Equivalent, g: 31
Fat, g: 49.1
Carbohydrate, g: 106.7
Linoleic Acid, mg: 8520
Osmolality, mOsm/kg H2O: 590
Calories: 1014
Vitamin A, IU: 2769
Vitamin A, mcg RE: 830
Vitamin D, IU: 608
Vitamin D, mcg: 15.2
Vitamin E, IU: 21
Vitamin K, mcg: 130
Thiamin (Vitamin B1), mcg: 2130
Riboflavin (Vitamin B2), mcg: 1070
Vitamin B6, mcg: 850
Vitamin B12, mcg: 4.3
Niacin, mcg: 17040
Folic Acid (Folacin), mcg: 300
Pantothenic Acid, mcg: 4270
Biotin, mcg: 43
Vitamin C (Ascorbic Acid), mg: 92
Choline, mg: 303
Inositol, mg: 51
Calcium, mg: 1174
Phosphorus, mg: 854
Magnesium, mg: 160
Iron, mg: 18
Zinc, mg: 11.7
Manganese, mcg: 1300
Copper, mcg: 1300
Iodine, mcg: 90
Selenium, mcg: 27
Chromium, mcg: 23.5
Molybdenum, mcg: 26.5
Sodium, mg: 459
Sodium, mEq: 20.0
Potassium, mg: 1526
Potassium, mEq: 39.0
Chloride, mg: 608
Chloride, mEq: 17.0
* Nutrient values are applicable when prepared as directed.

Note- it only says "carbohydrates" and doesn't provide "sugar" like most over the counter "food" is required to- so let's look at the

Vanilla Powder

EleCare Jr Vanilla Powder Institutional / 14.1-oz (400-g) Can / 6 ct

Corn Syrup Solids (54%), High Oleic Safflower Oil (9%), Medium-Chain Triglycerides (8%), Soy Oil (7%), L-Glutamine (2%). Less than 2% of the Following: L-Asparagine, L-Leucine, DATEM, L-Lysine Acetate, L-Valine, Calcium Phosphate, L-Isoleucine, Artificial Flavor, Potassium Phosphate, L-Arginine, L-Phenylalanine, L-Tyrosine, Potassium Citrate, Sodium Citrate, L-Threonine, L-Proline, L-Serine, L-Alanine, Magnesium Chloride, Glycine, L-Histidine, L-Methionine, Ascorbic Acid, Calcium Carbonate, L-Cystine Dihydrochloride, L-Tryptophan, Magnesium Phosphate, Choline Chloride, Aspartame, m-Inositol, Acesulfame K, Ferrous Sulfate, Taurine, Ascorbyl Palmitate, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Sucralose, L-Carnitine, Niacinamide, Salt, Calcium Pantothenate, Manganese Sulfate, Thiamine Chloride Hydrochloride, Cupric Sulfate, Vitamin A Palmitate, Riboflavin, Pyridoxine Hydrochloride, Folic Acid, Beta-Carotene, Biotin, Phylloquinone, Chromium Chloride, Potassium Iodide, Sodium Selenate, Sodium Molybdate, Vitamin D3, and Cyanocobalamin.
Phenylketonurics: Contains phenylalanine.

WOW WOW WOW did you read the FIRST INgredient?!??!?!? 54 percent CORN SYRUP SOLIDS

More sugar in that then most IV's. More sugar in that then baby formula. More sugar in that then Breast Milk-

So, I went looking for nutritional recommendations on various Mito Disese advocacy pages- I found this on the MitoAction website:

General Guidelines

4-6 small meals a day

include complex carbohydrate and protein at each meal

maintain a healthy weight

eliminate empty calories

avoid fasting (including avoiding liquids for many hours)

have a bedtime snack that includes both a complex carbohydrate and a protein

Did you catch that? It mentions COMPLEX CARBS but doesn't recommend simple carbs. It also recommends avoiding "empty calories." Aren't corn syrup solids "empty calories?" or labeled as such in our culture? What gives?

Hummmmm - since a huge part of the Mito Population either depends on supplemental formula's or supplements with both regular food and liquid nutrition, and they are up to 54 percent corn syrups(Simple carbs) this is puzzling.

Why 54 percent sugar for those dependent on supplementals for calories or digestion, but complex for general guidelines? In the general "healthy" population with no metabolic, mitochondrial or other GI interfering disease process this is very good advice, but how well does it apply to a population that often has very disabled digestive abilities? I am sure for some it is great advice, but for quite a few they are receiving very different ingredients in their supplements. Knowing your body, and why a Dr. prescribes certain types of nutrition is essential, and that includes the amount of simple carbs being recommended and why.

Now from the Franklin Institute:

Nourish - Carbohydrates Fuel Your Brain
Glucose is the form of sugar that travels in your bloodstream to fuel the mitochondrial furnaces responsible for your brain power. Glucose is the only fuel normally used by brain cells. Because neurons cannot store glucose, they depend on the bloodstream to deliver a constant supply of this precious fuel.

Okay, have you followed this? Sugar has been deemed evil. It isn't. As a matter of fact, our mitochondria need it, and sugar is the fuel for the brain. The clip above goes as far as describing Glucose(sugar)as a "Precious Fuel"

Granted, a healthy person with a healthy GI tract and a normal amount of energy can digest carbs and their body easily can convert calories to the necessary amount of simple carbs for body and brain health.

However, what happens when you don't have the energy to digest properly? Or what happens if your digestive tract is unable to process certain foods?

The GI Dr. that we loved said, "use it or lose it." He told Abby even if it hurts you must keep eating "real foods." Cook them, puree them, find the foods that hurt the least and keep eating.

When we found the depletion our major goal has been to protect Abby's brain. Her body clearly has been trying hard.

Abby when tired doesn't digest. It just passes through or just sits and ferments. I figured they prescribe supplemental formula's because they are easier to digest. I also then found that the Elecare Jr was 54 percent corn sugars. Of course then I knew already that the brain is dependent on simple carbs(aka sugar/glucose) to function. When Abby was a baby and it was an epic battle to keep her nursing, I remember the lactation consult explaining to me that the "fore milk" was higher in sugar, and that the longer Abby nursed the more fat and protein she would get.. that got me thinking, if our bodies produce sugar to begin with for babies delicate digestion, stands to reason there is a biological reason for it. Then after talking with so many Mito patients who described how terrific they felt after IV hydration and knowing it was full of sugar, I started thinking. In my family, the go to food when sick isn't soup, it is sugar. My Gram feed me liquid jello(when it was just real sugar not sugar-free) in a bottle. We crave sugar on white bread, or candy... My gram did, my Mom did, and I do. Why is it?

Because sugar is easier for our body to use. It gives us a quick pick me up.

We have found that when Abby is tuckered if we give her simple carbohydrates first, about 15-45 minutes before proteins she tends to digest much better. Just sugar and she crashes. Just complex carbs and proteins and she crashes because her body thinks it is more work then it is worth to digest it. If I give her a bit of quick "energy" in a zap of sugar, her gut seems to be more willing to make the effort to digest.

So for Abby sugar is far from evil. It has prevented her from gut shutdown. It has prevented her from major burnouts or crashes.

Is this why supplemental formula's are loaded up with sugar too?

High fiber foods and raw foods Abby avoids. Cooking,freezing, canning foods actually helps break them down, and for Abby's tired GI tract processing/cooking foods start the breakdown process for her. Last month the Food Network magazine published that canned or jared salsa actually provided more nutrition then fresh uncooked. For some foods even for healthy people,our bodies are more able to absorb nutrition when some of the processing is done before it hits our digestive tract.

Nutrition is incredibly complex. Each of us will have very individual needs. Some with health issues thrive on a grain-free diet. Some do best with a sugar-free diet. Some need a high protein diet. There are some patients who need very very individualized diets due to inabilities to process various enzymes.

But let us not demonize "sugar." When used appropriately, it has allowed Abby to continue eating and digesting normally without any medical intervention. Surely she isn't the only one,(54 percent corn syrup solids in one of the most popular prescribed supplemental formulas) and her brain and gut thank us daily for the sugar.

Our brain MUST have glucose to function.. if the body is too tired to convert what we eat into those simple carbs, what will happen?

Sugar is not evil. At least not for Abby. Once we integrated sugar at the right times for Abby, her nutritional balance improved remarkably. With sugar, she can digest efficiently with more ease.

Always talk with a Dr. before making diet changes. This is just our experience with Abby and what allows her to avoid medical interventions.

In my house, in moderation, sugar is essential. It is in medical foods, IV's, formula's, and breast milk. Not a "bad" food. Just a food you need to understand when and how it can serve a positive purpose.

Thursday, June 27, 2013

Mitochondrial Disease, is it even Real?

I am not arguing that the Mitochondria may not work right. Nor am I arguing that there isn't such a disease.

What I cannot help but wonder, who "really" has it? Out of all the patients suspected or with dysfunction of their mitochondria at the end of the day, where does it start and where does it finish?

Often we are reading articles that are connecting, cancer,heart disease, diabetes,autism,hearing loss, parkinson's, pretty much all diseases to the function or poor function of our Mitochondria.

Fair enough, cancer impacts us at a cellular level as do most progressive diseases, so not a reach at all that our Mitochondria are affected.

What came first though, the Chicken or the Egg? Is Mitochondria dysfunction what caused the disease, or the disease that caused the Mitochondria dysfunction??

What triggered it?

Couldn't it be since we know that for the most part all disease processes seem to trigger mitochondria dysfunction that Mitochondrial Disease as we know it for many may just be a symptom not the disease?

When you mention MTHFR mutations to many Drs/Specialists they will roll their eyes, or ignore, or claim there is "no science" that can possibly blame one mutation for the laundry list of diseases that are associated with MTHFR- but wait a minute, isn't that exactly what the mitochondrial disease researchers are doing with our Mitochondria?

Over the past year of all the Mitochondrial Disease patients I chat with or follow, by far the predominance of the patients who have undergone genetic testing- show NO KNOWN disease causing mutation.

Clearly, some of those likely have a mutation somewhere to blame- but do we call it Mito? We did not know about "Mito" until the 90's- isn't it possible that in another 40 years many of the patients who thought it was all Mitochondrial Disease will wake up to find it wasn't that at all? That the researchers will discover something new to blame instead? The older I get the more I realize how very few absolutes there are in life, and especially with our human bodies.

Please do not think I am saying patients with Mito are making it up- I am NOT. Abby is clearly very ill. So are the other patients I know who have been labeled with Mito. Drs as a general rule refuse to believe a patient needs help or is sick unless a laboratory somewhere can say there is something "not normal." Shoot, half the Drs. Abby has seen just refuse to believe Abby has Mito at all despite lab based proof- Why? I have met a lot of smart Drs. who don't believe in most of the Mitochondrial Disease profiles, Why don't they? Maybe they have good reason.

Isn't it at all concerning that Mito,autism, ADD, ADHD went from unknown to 1 in 5 American Children suffering from a chronic and disabling disease and many of those children have Mito,autism,ADHD and other "newer" diseases. How did these diseases that hardly existed in 1980,jump to 1 in 5????

Something is wrong with this picture.

If 1 in 5 children had cancer, our Government would be in a state of absolute frenzy- panic! Even though they now have ways to help children with cancer often go into full remission, where no such treatment exists for all the others.. We would have investigations, teams of CDC officials investigating, National Campaigns to save our children.. Yet, on Mito,Autism, our government is Silent.

Many children diagnosed with Mito or Autism(root cause known or not) won't pay taxes, they are disabled. Won't have careers, they are disabled. They will either have shortened lives like terminal forms of cancer, or be dependent on the government or families for the rest of their lives and our Government is SILENT.

Something stinks. We went from a small group of patients diagnosed with Mito to every disease I can name now being associated with sick Mitochondria..

Which is it?

Call me skeptical, but I don't think Mitochondrial Dysfunction is necessarily the cause for so many of the health issues we see today-I wonder if it just might be a symptom. How long will it take to differentiate between those patients with Mitochondrial dysfunction as a primary disease and those who have Mitochondrial dysfunction which is secondary to another disease process? If you are like Abby, the clock is running, I am not sure she has 40 years to wait around for another discovery to clarify or figure out that there may be something untreated that we could have treated and prevented so much suffering, or something that could be removed from environments that could prevent many more cases...Every day it seems I read another blog of a child dying,a baby dying, an adult.. Mitochondrial Disease is blamed. But what caused it?? What caused the Mitochondrial disease or dysfunction.

No cure until we know the cause.

Everyday we run into the same circular thinking. Why do half the Specialists feel they are done diagnosing Abby when the Depletion was discovered and the other half feel it is wrong- but neither school of thought promotes us to keep searching for the "real" problem. For the few Drs. that we hold Dear that do support our quest to really know and not just treat symptoms they don't know where to send us next.

Why so suddenly are our Mitochondria sick,missing, dysfunctional, deleted, depleted? These little critters have kept us living well since the beginning of time, so why this crash and failure now?

Like being born with only 2 or no wisdom teeth at all is considered an evolutionary marker, could it be that our Mitochondria pooping out is another sign, of some evolutionary change? Some new crazy virus? It seems like the world in general doesn't pay much mind,but to me it feels like a tidal wave, could be because I am watching my child suffer I have a more exaggerated opinion, but even if I had healthy children, I cannot help but wonder about my friend's children who are dropping like flies.

Do we have a self destruct button?

I don't know, and I really do NOT like not knowing.

What is different today that 1 in 5 children(let alone a frightening number of adults) are sick, really really sick. Yet, we have NO CLUE why so many are getting sick? The numbers are rising by the day..

As this epidemic spreads, when will we decide it has spread too far? When will our Government go into intervention mode? Probably when it is their child that becomes a statistic. When it becomes your child. That is what it took for me.

When the Hollywood crowd, the Politicians and the uber wealthy are told their child has Mitochondrial Disease and there is no cure, and no treatment, then it will be a epidemic but not until then.

I think we are screwed- we cannot just sit back and trust that Dr. know's best- they don't. We must push, and push hard.

I won't wait 40 years.

For the last couple years I have waited and waited to hit the point where I could accept there wasn't anything to be done for Abby. As each new symptom happens with Abby I wonder if it is the symptom that will confirm the Depletion is the issue, or the issue that helps us find the disease that caused the depletion. It hasn't happened yet. New symptoms and issues keep showing up in Abby,none make any sense. How I envy anyone who can just have faith, who can just accept this diagnosis and everything that comes with it.

For me I thought getting a diagnosis would answer all the questions. That we would understand Abby better. Unfortunately, it has only opened the door to more questions, harder questions.

What I am realizing, no matter how many patients I talk to, or how many articles I read, I cannot accept this "depletion" answers 18 years of medical questions- I cannot accept it, because it doesn't. There is something else wrecking havoc in her body, and I have to keep looking. Abby agrees. If the Depletion is the "symptom" what is the disease?

Wednesday, June 26, 2013

Get Out- No Way! Fountain of Youth.

This past year we hear " Get out, No freaking way!" more and more when we try to tell folks Abby's age.

I was looking at her pictures at age 10-11 and in some ways she actually looked older then she does now. Weird right?

Granted, she dresses "different". She has a unique sense of style that she has created out what she appreciates and what her body prefers. She is incredibly individual and could care less what anyone says about clothing choices.. since there is no need for conformity in her small world we encourage her to embrace it, why not? If it seeds more happiness, we support it. Plus, we did grow up in Seattle and Oregon, there is a much higher tolerance there for what is socially acceptable as far as clothing- I am sure that has influenced us as well.

Comfort, temperature and ease of dressing and a strong appreciation of the Lolita movement a couple years ago have transformed into a younger and very individual take on style.

Always with the tights- white tights, black tights, cream tights. These keep her more comfortable and reduce some aching and swelling in her legs and feet. They also help her regulate her body temperature. They also protect her from contact rashes on the skin of her legs. If she brushes against a chair that has been sat in by someone who has cats she rashes, or horses, or wool.. so I can see why she would want to avoid that! I am sure there are flesh colored tights out there, but what fun are those? If you gotta wear them, you might as well "say something" with a color..

Dresses or skirts almost always. Jean's have been a struggle for years, more work they are worth trying to get them on and off. Leggings are fine under dresses but the denim just fights back too much. With a little different take on clothes she doesn't often need our help and that is so important to her. Shorts don't keep her warm enough, though she will layer them on top of tights under her skirt or dress. Capri's the girls have deemed are too "old" for them! (my favorite so stands to reason they associate them with old ladies!).

Hair- long. She has trimmed her hair over the years, but never worn it short or even shoulder length. Trying to pull it back or braid it just takes a lot of energy. Even if we do it, it pulls on her head which she prefers to avoid, her neck and head are very tender and if we pile all that hair in the wrong direction it gives her neck too much of a workout. So long and loose and wild. Since makeup isn't an option I can see why having long girly hair has more importance to her.. Plus, I look hideous in long hair..I always have and my Mom would cut my hair in the bob style from the time I can remember- I really hated her for keeping my hair short, but finally admit in my old age I cannot have that beautiful, glorious long hair. Both my girls look amazing in long hair and it just makes me happy to see all that long hair on them, so I suspect my positive opinions of long hair on them has encouraged her not to cut it. Sure would be easier for someone with such low energy and who spends so much time in bed, but she gives up so much as it is... the hair stays. Since I took over washing it when she is up to it, it has been manageable.

All the accessories- lolita influence. I can see why, really with what works she can either go for a much older style or younger- and considering she is young, and looks even younger accessorizing leaning toward youth just works better. She would look hilarious if she tried to pull off something too teen or too old lady! :-)

Fun- she does have fun with her choices. When she isn't going anywhere she doesn't get dressed. She has more robes, nightgowns, jammies in general they we can jam in her drawers. We have all enjoyed keeping her in good supply- who doesn't love jammies? They are often really cute, fun, and even funky and above all else, comfy! So, when she has to get dressed(a huge effort for her, she showers or washes up if a shower is too much the day before, I wash her hair the day before, Sara is usually a good sport and helps her brush out her wild mane and the clothes are picked and laid out. The day of the appointment she does teeth, maybe a brushing of hair if she feels up to it and getting dressed by the end of the appt and the 2 days it took, she is tuckered out) she makes it count.

Clothes aside, she "looks young." She doesn't wear much makeup if any, her skin reacts badly to most types. So just not been worth it. Beyond that her mannerisms are "young," her voice is soft(always, takes energy to talk) but maybe because of the low tone in her face she just doesn't have a grown up face. Her features are soft and round still like she hasn't hit puberty. Her facial features at rest are "relaxed." For example, when I read my email my family chuckles watching the zillion expressions that run rampant on my face. From joy, to anger they always wonder what in the world I am reading to show so much emotion. Abby on the other hand, shows none. She does smile and can smile and when she allows she fills her face with expression, but she "makes" it happen instead of like the rest of us where it "just happens." I figure a relaxed face with little expression won't age as quickly as in one where the expressions change second to second..

Less sun exposure- even at her best she was never a huge play outdoor's in the sun kid. For a few years at her best she enjoyed playing in our pool but generally "hung out" and would not swim, and always hunted for shade. So we know that too much sun exposure can cause premature aging, since she doesn't get a lot of sun, she hasn't suffered the same amount of sun "aging" as her peers.

Healthier life style. No chemicals, no preservatives, for the last couple years.. that too might be helping.

Edema- she has it often enough. She spends a lot of time lying down so it settles in her face. That too contributes...

Plenty of reasons why she looks younger, but still especially with the "shrinking feet" and even her hands shrinking, it is unnerving.

We tease her endlessly about it and she takes it in good spirit.. she always said when she was little she NEVER wanted to grow up and we even teasingly never put more then 10 candles on her cake each year...

Just another something that makes her so incredibly unique and cherished by us.

Who would think that by having to deal with all of these health issues she has managed to conquer what no other man has, The Fountain of Youth?

Cup is always half full.

Tuesday, June 25, 2013

Gluten Free Raspberry Zinger Cake

dairy free, corn free, nut free, chemical free, color free...

We have had some success with raspberries with Abby and before we find it is a fluke, or her stomach says no more we HAD to make fake Hostess Zingers Abby Style.

I don't have a nifty twinkie pan(yet) so we opted to make 1 GIANT Zinger.

First: You need Raspberry filling. The night before; combine 2 cups of slightly mashed raspberries with 2 cups of granulated sugar. Heat on medium heat for about 4 minutes till foamy and hot. Allow to cool and throw it in the fridge overnight.

Second: Make the sponge cake(we have used this recipe before for the jackfruit jelly roll)

4 eggs
3/4 C. sugar(domino's)
1/4 C. water(filtered)
1 tsp. vanilla(homemade)
1 cup gluten free All Purpose flour
1 tsp baking powder(Hains)
1/4 tsp.salt(pink himalayan)

Preheat oven to 375 degrees and line a 10x15 Jelly Roll pan with parchment paper. Beat eggs until they are yellow and fluffy. Add sugar, then water and vanilla. And the rest of the dry ingredients and mix well. Pour onto a parchment lined 10" x 15" pan. Bake until the cake springs back, approximately 10-12 minutes.

While still hot, roll cake up ( short side ) and allow to cool for 10-15 minutes while rolled. Pick your filling (raspberry jam and marshmallow frosting this time). Gently unroll cake and spread with filling. Roll back up. Allow to cool or place in fridge. Sift corn-free powdered sugar across the jelly roll before serving.

4 egg whites
1 cup sugar(3/4 cup is not as sweet)
1 teaspoon of vanilla extract
dash of salt

Marshmallow Frosting-
4 egg whites plus 1 cup granulated sugar. In double boiler(or pyrex nestled in a pot of boiling water)heat and mix till all sugar is dissolved. Remove from heat and whip on high speed with hand mixer till it foamy add a splash of vanilla extract and a dash of salt. Keep mixing on high(aprox 5-7 minutes of mixing)till thick like marshmallow creme.

Unroll sponge cake and cover with marshmallow creme. Spoon a generous amount of your raspberry jam you made last night on top of creme and spread to cover the creme. Roll up- FYI- if you are heavy handed it will ooze out the sides- don't worry, just get it rollled. I placed in freezer to firm up on a cookie sheet while I made the glaze.

more raspberry jam
lemon juice
plain yogurt
1/2 cup shredded coconut.

Mix equal amounts of raspberry jam and plain yogurt(I use homemade coconut yogurt any works) 2 teaspoons of lemon juice(less or more but this cake is SWEET you want some ZING in your zinger right?) Mix well till smooth. This will be a glaze so pretty thin. Pull roll out of freezer and slather the roll everywhere you see cake. Sprinkle wet glaze with coconut shreds. Throw back in freezer till firm enough(about 20-30)to transfer to serving platter without as much mess or breaking.

Finish with a few fresh raspberries, we used a lot to offset the super sweet- if you can eat more then a slice without your sweet tooth fainting we bow to you! This is one super sweet cake! :-)

Monday, June 24, 2013

New Vocab

With my addiction to reading medical articles comes a TON of vocab I am not familiar with(please do not ask me to pronounce any of it! I have an LD that makes even endless repetition unable to help!)and found it nearly as soothing as a word puzzle to hunt down definitions-

Here are a few for you that I found in an article I read this morning. Not all new to me, and certainly not all of it is applicable,but in the articles I have been reading I find them frequently.

Akathisia: a feeling of inner, general restlessness that is reduced or relieved by moving about( Restlessness)

Ataxia: incoordination in the performance of a motor task(incoordination)

Athetosis: slow, writhing movements (probably a form of dystonia)(slow withering movements)

Ballism: large amplitude, irregular, purposeless, non-rhythmic rapid movements

Chorea: irregular, unpredictable, brief jerky movements that are usually of low amplitude

Dystonia: twisting movements that tend to be sustained at the peak of the movement, frequently resulting in abnormal postures

Myoclonus: brief, sudden, shock-like involuntary movements

Parkinsonism: a tetrad of bradykinesia, rigidity, tremor, and postural instability

Tremor: an oscillatory, rhythmical, and regular movement that affects one or more body parts

Sunday, June 23, 2013

Baked Beans(tomato- free, corn-free, soy-free, vegan)

(VEGAN- if you omit the honey)

Some foods just are going to be a challenge to replace, baked beans being one of them. No tomatoes, no prepared mustard, only Braggs Apple cider vinegar and no pork - somehow though these came together just delicious! I do miss a bit of bacon, but I have to say, using fresh ground mustard seeds and Abby's No-Tomato ketchup(roasted red pepper base) really elevated these and made them a little more grown up. Still plenty sweet though! :-) If you can have bacon throw some in, it will only make them even better!

1 pound dry navy beans
2 quarts water(Crystal Geyser's works for many)
1 large yellow onion, diced
1 green pepper diced
3 bay leaf
1/2 teaspoon ground black pepper
1/4 cup grade B(A is fine, b is just stronger) pure maple syrup(even 100 pure can be corn contaminated-investigate what they use for defoamers)
1/2 cup light brown sugar, lightly packed(domino's)
1/2 cup No-tomato ketchup(search my blog for the recipe)
2 Tablespoons Braggs Apple cider vinegar
1 Tablespoon lemon juice
1 tablespoon blackstrap molasses(Plantation brand has worked for us)
1 tablespoon of honey
1 tablespoon grated fresh ginger(or to taste)
1/2 Tablespoon fresh ground mustard seeds(bought whole seeds at the Indie/Paki Store- cheap and so far no reactions)
1 teaspoon salt
1/2 teaspoon of ground red pepper(more if you like it sweet and spicy)

Soak beans overnight(you could used canned if you have some you are safe with). Rinse.

Put the beans in large pot with 2 quarts water, the onion, bay leaf,green pepper and ground pepper. Bring to a boil, then lower the heat and simmer for about 1 1/2 hours, or until tender. Drain the beans,but reserve the cooking liquid. Remove bay leaves and toss them away.

Preheat the oven to 275 degree.

In a small saucepan, whisk together(everything else) the maple syrup, brown sugar,no- tomato ketchup, blackstrap,mustard seed,red pepper, ginger, salt, and 1 1/2 cups of the cooking liquid. Bring to a simmer and cook over medium heat for a few minutes to make sure sugar is blended well.

Transfer the beans to a medium casserole. Pour sauce over beans a give a quick stir.(they will be soupy!) Place the lid on top(or cover tightly with tinfoil) and bake for aprox. 3-4 hours. Check occasionally; if the beans are too dry, add 1/2 cup more of the cooking liquid(or water). If you like, you can remove the lid for the last 30 minutes to thicken the sauce. For the most part the longer and slower you cook these, the better. These reheat very well.

Saturday, June 22, 2013

She Ate Raspberries(and Artichokes TOO!)

She ate Raspberries and she also did well with fresh artichokes. Maybe to you this isn't big news but to us a Major positive.

When she first developed the major GI issues the food that was the straw that broke the camel's back was an artichoke, or it was perceived as contributing. Looking back anything could have been the catalyst but regardless the artichoke got blamed.

In a lot of ways like being able to add in a few previously not tolerated foods we have continued to see some positives. For the last month she has had the energy to request hair washing on a very frequent schedule. Since her hair is nearly down to her tush it is no easy task. I took on washing it with project elimination. Up until recently though, just the act of letting me wash her hair would wipe her out to the core, just washing her hair could set off a hibernation stage. I think it still costs her quite a bit(usually takes a nap after)but she feels well enough that a clean head is a priority. Lots of other positives of daily living around here. A greater interest in helping, in spending time with each of us. Despite increase in pain she is just tolerating life much better, she has enough extra energy to get through more days each week without losing ground,she still flares but bounces back much quicker, a good thing indeed. She has the energy to smile, laugh, tease- most days that is enough reassurance we are on the right track still.

In general, her sleep needs have balanced out. Of course Abby still needs a lot more sleep then most. For the last month or so she has averaged 12-14 hours of split sleep. That isn't bad at all. Especially because it is consistent. Fewer bouts of exhausted insomnia, almost no bouts of hibernations for days on end in a very long time. She struggles still with 2 asleep then 2 awake.. but I think most times she just accepts it as something her body needs. We lovingly call it Baby Abby sleep schedule- but if it works, leave it alone.

3 week's in a row she left the house 1 time each week for a Drs. appointment. She hasn't done that many outings in a month in nearly 2 years. The first visit she bounced well from.. the second a bit of a struggle and then this last one her body called mercy. Each trip sent her proteinuria through the roof, but until the third visit is settled in 48 hours. It is dropping again but not as fast.. Doesn't probably sound like a positive to most, but since in general it has take 2-3 weeks for Abby to feel better after 1 easy 1 hour or less appointment this is impressive to us.

The dental woe's continue. Any and I mean any trauma to Abby's body throws everything off. A trip for a blood draw means extra sleep, extra gastritis, extra pain and her kidney will complain for a few days after. So the very thought of dental work and the potential impact to her very sensitive and delicately balanced body is terrifying to us. We should have a better plan by next week. No way will the wisdom teeth come out unless infection sets in.. Derek's all grew in eventually, I think it would be easier to make room for the teeth then remove them- thanks to the new Japanese Princess crooked teeth are all the rage in many parts of the world, so if a wisdom tooth erupts and throws off all the great orthodontics- so what.

The saga of the shrinking feet- no idea. Dexa and x-ray's looked fine. Perhaps a combo of loss of muscle tone and resolving edema, but I still say going from an 8 1/2 to a 6 1/2 as an adult is a little too weird. However, she walks fine and beyond some pain in her toenails(like before when they died and she had granuloma tissue, though no sign yet, Abby is certain that is the issue again) her feet, knee's don't bother her. We do need to find a time to visit the Podiatrist but not urgent- we all kind of doubt anything will prevent her toenails from doing their weird thing, just a matter of fixing them when it becomes obvious. Abby and I talked about inserts or splints if on the off chance they could help with the "shrinking" feet, but she said she would not use them. She cannot wear shoes without the skin tearing on her feet so unless they make inserts for socks or ballet slippers-they aren't an option.

The improvements have been minute and if I did not pay such close attention I would have not taken note. The negatives are there as well but those as well are pretty tiny. It seems to us there is some loss of muscle tone in her shoulders and neck. A few times she has asked for help to get up off the floor because she is unable to pull herself up. Very much reminds me of her when she was just 10 months through age 5 years old and walking but when she fell she would be stuck.. However, I am wondering if it isn't new weakness at all. That she simply feels well enough to try to squat down to grab something and the weakness that has always been there is more apparent. Hard to say.

Of course the food continues to be the center of our world. It is the one thing that we have found impacts her for the positive or negative that we actually have a lot of control over. Some days it an hour by hour assessment of what she can tolerate. Other days food is easy, all her safe foods in whatever order seem to sit just fine. Over the past couple months she has had more good food days. Days where we don't have to wring our hands and plan out how to keep the food in her, or how to get it back out. :-) Abby has even had days where no sugar has been required and the food stays nicely. Definitely progress there.

I have been impatient and anxious lately. I think while we were seeing what we were doing was helping her improve that was enough. Now that she seems to have "peaked" I am feeling panic to figure this all out. If I see any sign at all of a new problem my heart races trying to figure it out before it becomes a problem. Is it or isn't it the depletion for the root cause? Is it or isn't it MCAS causing the extreme food and environmental reactions? Will we ever find a medicine that she doesn't develop a serious reaction to? Do we try to find an allergist/immunologist at this point? Is there one out there that will understand that a bag of meds may not be the answer, and if meds don't work for her, should we even bother taking her to yet another Specialist? Do we push to see other Specialists? I flip back and forth on this subject in a manic process.. in the back of my head I know odds are we may not find out. Or only time will tell- neither makes me particularly happy, but maybe it is time I accept that "It is, What it is." When a flare strikes that I can find no root cause for it sets me on edge..however, as each flare fades my optimism returns and we continue forward just enjoying how stable she is with our wacky intervention plan..

Some days I am nearly willing to give in and accept that maybe a "mitochondrial myopathy/depletion" is the root issue. That would mean that she is an original. Other days I don't buy it. My gut says that the myopathy is a given, but there is another primary issues(like MCAS) that screwed her up enough to cause a depletion. After all her depletion is pretty mild.

Then I have days where I am so happy that she is unique. By protecting her energy at all costs, at creating a safe environment, by 2 years of crazy dedication to diet, if she does have a depletion syndrome, then we have done a great job managing it without risking complications from medical interventions, she has proven herself to be better off when we embrace "Less is More". Our lifestyle choices to protect her work for us. I don't think many families make this choice. Most find the risks of interventions to chase more normal lives to be healthier for their emotional wellbeing- we are very lucky not to have the same social needs. It allows Abby to have a unique ability to not waste a drop of energy. Being an Introvert is nearly a disease in America, and thank god we caught it! LOL Sometimes not being normal works out for you.

Raspberries and Artichokes back in the diet says a lot. Abby and I are super pleased that they are back on the table. Actually ridiculously pleased! Watching her eat them, swells my heart with pride- all her hard work gave her something back. Funny, I cannot help but think it is a fluke that she is tolerating them, I worry constantly she will eat them and it will start a chain reaction,I need to let that go and relax and just enjoy winning for now. We plan to hang on to that feeling when new things come up like they always do with Abby. If we got the artichokes back we have won at least one tiny battle, which gives us hope against the war.

Friday, June 21, 2013

Vanilla Pudding Cake(gluten free, dairy free, corn-free)

One of the first cakes that Abby learned to bake was a chocolate pudding cake. One of those that makes it's own pudding.. over the years they were a favorite. We also really loved the gingerbread pudding cake version.

These days since Abby seems to have developed an allergy to chocolate we of course want it..and cannot have it. We all remembered that that moist, gooey, pudding cake..

Abby found a vanilla pudding cake recipe the other day and thought if I could make an allergy free recipe for her she would love it, might not replace chocolate, but might just make her happy. It did! Not at all pretty is it? I threw some strawberries on mine(because I could) but it did not need them. For some reason, my pudding sauce was a little thick and did not sink to the bottom of the cake. It wasn't a problem, in fact I think it made it better. Throughout the cake you would cut into pockets of ooey gooey pudding.. The cake stayed incredibly moist and was just as wonderful on day 2.

1 1/2 cups coconut milk
1/2 cup granulated sugar(domino's)
1 Tablespoon Potato starch
1/2 tsp vanilla extract(homemade)
2 Tablespoons water
1 cup gluten free flour
2/3 cup granulated sugar(domino's)
1 1/2 tsp baking powder(Hains)
1/2 tsp salt(pink himalayan)
1 egg
3/4 cup coconut milk
3 tbsp grapeseed oil or melted coconut oil(a lot of the corn allergic do well the Trader Joe's grapeseed oil. )
2 tsp vanilla extract(homemade, store bought is corny from the grain alcohol they use)

Preheat oven to 350°F

Grease a 8-inch square glass baking dish.

Sauce: Transfer 1 tbsp of the milk to a small bowl. Heat remaining milk and sugar for 2 to 3 min or until steaming in a glass measuring cup in microwave on Medium (50%) power or in saucepan over medium heat on stove-top. Add potato starch and vanilla to reserved coconut milk; drizzle into hot milk mixture, stirring until sugar is dissolved. Set aside.(should be a thin pudding consistency like crepe batter)

Cake: In a large bowl, combine gf flour, sugar, baking powder and salt. In another bowl, whisk together egg, milk, grapeseed oil and vanilla. Pour over dry ingredients and stir just until moistened. Spread into prepared baking dish. Gently pour warm milk mixture over cake batter without stirring.

Bake for about 30 min or until tester inserted in cake layer comes out clean(remember the pudding is going to stick). Let cool for at least 15 min. Serve hot or warm.. Fresh berries were great with this cake, though Abby assured me it hit the spot for a comfort food dessert,no berries needed.

Thursday, June 20, 2013

Lemon Meringue Pie(gluten free, corn free, dairy free, soy free, nut free)

I was watching Master chef last night and it inspired me to try my hand at making a lemon meringue pie. A few of the pies on the TV were a redhot mess, so figured even my heavily substituted version stood a reasonable chance of turning out.

None of us are huge fans of Meringue but I cannot imagine making the pie without it, even though we don't always eat it, we sure love how it looks.

1 1/2 cups granulated sugar(Domino's is used by many with corn allergies safely)
3 Tablespoons potato starch
3 Tablespoons all-purpose gluten free flour
dash of pink himalayan salt
1 1/2 cups hot water
3 egg yolks, slightly beaten
2 Tablespoons coconut oil
1/3 cup fresh lemon juice(for the very corn allergic, lemons can be difficult, often coated in corn contaminated wax)
1 baked pie pastry(gluten free or gluten free graham cracker crumb), 9-inch
3 egg whites
1 teaspoon lemon juice,
6 Tablespoons granulated sugar(domino's)

In saucepan, combine 1 1/2 cups sugar, the potato starch, gf flour, and salt; whisk to blend well. Stir in hot water. Place over medium heat and bring to a boil, stirring constantly. Reduce heat to low; continue cooking, stirring, for 2-3 minutes(it will be thick!). Stir about 1/3 cup of the hot mixture into the slightly beaten egg yolks(beat it as you pour to prevent scrambled egg), then return to the hot mixture in pot(beating it in quickly as you return it as well). Bring to a boil, stirring constantly, and cook for 2-3 minutes longer. Add coconut oil. Slowly stir in 1/3 cup lemon juice. Pour into baked cooled pie shell.

Beat egg whites with 1 teaspoon lemon juice (if used or a bit of cream of tartar) to soft peaks. Gradually add the 6 tablespoons sugar, beating until stiff peaks are formed. Spread meringue over the hot filling, covering completely(make sure it touches the crust all the way around without covering the crust). Bake at 325° for 12 to 15 minutes, until golden brown. Serve well chilled.

Wednesday, June 19, 2013

Unique or Disease?

Do we call it a disease or simply a mutation?

A disease needs treatment, medications and Drs.

A mutation is just "different." to us it means we need to do things differently,this doesn't necessarily mean "sick."

Unique. Delicate. Different. An Orchid.

These thoughts bounce around in my head frequently for the last couple years. Admittedly I often wonder if it is our family that is is in denial(I have never denied we are eccentric!) or if perhaps doing things so differently has been part of why she has done so well.

Often I see the recommendations from other Drs. for Mito patients to do all the medical interventions to help the kids lead "normal" lives-tubes to make it easier to grow and be "normal." Immune therapy to be able to go to school and not get "as" sick.so they can be more normal. Medications to trick their bodies to do more..I have heard more then once that it is important for the family of the Mito patient to maintain "normal"- but I cannot grasp medical interventions as normal to us,to our family they imply sick. Abby is "unique" not sick. She gets sick often, but she isn't "sick."
My question is- they aren't normal genetically, we cannot change their genetics, so how in the world will treatments, tubes, interventions push them toward normal? Will thousands of Dr. trips, tubes,chairs, wheelchair vans, bi-pap,meds, liquid foods make life more normal for them or the rest of the family? No. Not for us, and this is okay I have decided.

At the end of the day, are they really better off then Abby with all the medical interventions? I think SOME(not all, some do seem to "outgrow" with interventions) will end up at the same place no matter what is done. Their bodies won't be tricked for long and no matter the interventions, their genetics will win.

Life saving I understand. "Medical Intervention" for the sake of trying to compensate to be "normal" I cannot grasp. Though we do provide "life interventions" for Abby so she can stay her optimal "unique".. each life intervention leads to another.. just like for others each medical intervention leads to another.. it doesn't matter which you do, it is all about what makes you and your's feel "normal/unique".

Abby and I think she is normal- normal for her. She has a very unique body that needs a unique way of life. When we eliminate all physical stress from her world, her body rewards us with great though unique function. When we eliminate exposure to chemicals, allergens, her body rewards us with it's "normal.". When I wash her hair, cut her nails, cook her meals, clean her room,to save her from doing it, her body says thank you and rewards us with her "normal." When we keep her safe against bacteria and virus's the outside world is crawling with, when we keep her away from hospitals and the exposures to germs they promise, she gets to be her kind of normal. Not sure many would agree our family is "normal" but normal for us is to be happy and healthy- and we strive for that type of "normal" above all else. For others, it is the medical interventions which allow them to feel more "normal"- that is good for them where it isn't good for us or Abby.

Yet,I admit we note the reduced muscle mass because her unique gene's don't like to move.. We note the ever growing list of "unique" new things occurring.. but, ya know, even with all the medical interventions in the world, many with Mito continue to show new symptoms.. it seems one intervention leads to the next whether you treat them as "unique" or diseased. Different methods, same outcome.

My husband's little sister is deaf. Right around the time she hit elementary school chochlear implants to give children their hearing back were introduced. I(17 years old at the time)thought it was a Miracle and was shocked when many in the deaf community thought they were awful.. For many in the deaf community, they are not broken or sick, they are normal, just a little different, they are unique. They have found acceptance and lives full of rich fulfillment. They were not broken or diseased and found the implants repugnant. They don't need "hearing" to lead healthy and happy lives. They are unique and fulfilled.

Of course being deaf is very different then Mitochondrial disease. Being deaf won't morph into the rest of your body failing like Mitochondrial disease does.. If there was a pill or medical treatment that guaranteed Abby would get no worse or she might be able to be more "normal" so she could be a Dr, or run marathon's, or a lawyer, or finish college,if she wanted to, I would would give my life for that pill or treatment- but there isn't. Right now "it is what it is" no matter which methods work for you and your Mito family.

Maybe because of that experience or maybe because we are just different, I don't see Abby's issue as a disease. She is different. She is unique. That is perfectly okay with us.

When she doesn't feel well it isn't the Mito, it is the same thing in my mind as aches and pain to the elderly or having a cold, or a flu- it is normal for Abby. Her normal is just different then the majority. Just like her IQ score put's her in the top 1 percent, her body is in the 1 percent of "different." Not sick.

There may come a time(we have had a few already) when our problem solving won't do enough to keep Abby at her normal level of unique, where she might need medical interventions to stay alive..or stay her special baseline of "unique." I love that she likes who she is and she accepts her body is special, unique.. she could do without the pain and the flares.. but she has found a way to work with her body rather then fight it. I love her just the way she is.. As a family we are full of compromise, the needs of her body have made how we live very different then what the mainstream stream accepts as "normal" but who wants to be normal?

For the last couple years I have really felt so different then many parents in the Mito World.. It was like looking at a completely different world. It was like waking up in a village in China one day and not knowing the language,food, culture..

I keep fighting thinking that there is something so very wrong with me that I find all the medical interventions repugnant. I keep fighting hoping it isn't her "unique" body making her have to fight all these new issues-but some unknown disease that is curable-

Maybe it is time for me to accept that after 18 years that it is okay for us to accept we might never know. That there is nothing wrong with me for feeling bewildered about choosing our way of life over the medical intervention path. To accept this is just Abby. Incredibly unique, delicate. She is our orchid and that may never change. No medical intervention or lack of medical intervention is going to change the outcome, it will only change the scenery. There is nothing wrong with the other families or mine. We just feel happier and healthier on very different routes.

Fact is, we like our route. It is okay for us to take a different route even if it isn't the popular route.

I don't deny the "unique" part of Abby. 18 years of inventing a new way of living and bucking what's normal makes that painfully clear. What I may need to finally accept is there isn't a disease other then the mito that is curable.. or if there is another unknown disease making her "uniqueness" harder on her less then normal body, there isn't a Dr. in the World capable or willing to find it right now.

It is okay for me to breath. It is okay for us to put another chapter to bed. Who know's as her body continues to throw new unique issues at her, maybe it will show up eventually there is something a Dr. can fix. Today though, she is simply unique and it is okay to accept and rejoice in what a wonderfully unique and special life we have with Abby.

Monday, June 17, 2013

Chickpea's and Coconut BreadCrumb Cake

Today I was checking my pantry to see what I was running low on and realized I had managed to dry and save a ton of gluten free breadcrumbs. I figured there had to be something interesting I could cook with bread crumbs. After browsing a number of recipes I found a few vintage recipes for breadcrumb cakes. I believe a few were dating around 1920. Up until recently(last 20-30 years) most people could not afford to waste food and I thought trying to make a cake using breadcrumbs would be interesting..

I have been wanting to make a frosting that did not involve powdered sugar for awhile and figured while I was in a creative mode this would be a great time to give it a try.

The cake turned out tasty, different but good. It clearly is very textured and dense. It was also sweet, and moist. I think if I make this one again, I might opt to add some fruit or sweet potato to the mix and spice it up a bit.. The fact that it is basically egg, bread crumb and and sugar- well it turned out great.

Now, the icing that was great on all sorts of levels. The only unfortunate part was that I did not have as many roasted chickpea's as it should have had. I probably had 1/4 cup chickpea's but wish I had a full cup to add.

Overall a great experiment. The frosting especially will come handy for future cakes.


4 large eggs
1 tsp vanilla extract
1/3 tsp salt
1/4 c coconut milk
1 1/4 c sugar
2 1/4 c oven dried and toasted gluten free bread crumbs


1 Preheat oven to 300 degrees.

Grease a cake pan.
2 Briskly beat together the eggs, extract,coconut milk, and sugar. Stir in the bread crumbs.
3 Put batter evenly into cake pan. Bake for 1/2 hour.

Coconut and Chickpea Icing
1 cup coconut milk
1 cup white sugar
3 egg yolk, beaten with 1 teaspoon water
1/2 cup spectrum palm shortening
1 teaspoon vanilla extract(homemade)
1/2 cup chopped roasted chickpea's
1 cup flaked coconut


In a large saucepan combine coconut milk, sugar, egg yolks, coconut oil and vanilla. Cook over low heat, stirring constantly, until thick. Remove from heat and stir in chickpea's and coconut. Spread on cake while still warm.

Sunday, June 16, 2013

Gluten Free Pita's (No puff!)

(Not for Abby! She wanted just hummus in her pita, and that just doesn't make a pretty picture! So threw some fresh tomato's and basil from the yard into these)

I have made what seems like a zillion gf pita's- with a huge failure rate(really huge!). I am apparently cursed to never get consistent puffing of my pita's. So, instead of fighting failure I embraced it. Can't beat um, join them. I let these rise enough to be fluffy and then baked. Once cooled I cut in half and slice them open. The pita will be elastic and tolerates cutting well.(I used a small bread knife to cut them open). I like to throw them in the oven to warm before serving.

3 cups gf flour blend
1 teaspoon salt
1 teaspoon guar gum

1 packet yeast
1 Tablespoon sugar
1/2 cup warm water

1 egg
1 cup warm water.

Proof yeast with 1 Tablespoon sugar and 1/2 cup warm water.

In large bowl, combine flour, salt and guar gum. When yeast is proofed add egg to yeast and mix. Pour egg and yeast mix into flour. Mix, add 1 cup water. (you want it soft but firm enough to shape, so add more water if needed).

Allow to rest 15-20 minutes.

Form into aprox 8-10 balls. Roll out each into a round about 1 inch thick. Place on greased cookie sheet and cover with saran wrap. Allow to rise in warm place till fluffy.(aprox 1 hour)

Preheat oven to 500. Bake 8 minutes. Flip and bake another 3-4 minutes till golden. Allow to cool until you can handle them. Cut in half and then using serrated knife cut each half open into a pocket. Make sure you cut them while fresh and still warm. Gf breads tend to dry and crumble over time, and these will not cut into a pocket as easily the next day. Store in airtight container. Always best on the first day, but fine for a couple. We like to warm them in the toaster oven before serving.

Wednesday, June 12, 2013

Gluten-Free "Rye" Bread (dairy free, corn-free, nut-free)

(Fresh "fake" rye bread, fresh sprouted alfalfa sprouts(always have something sprouting here),fresh garden tomatoes. I dressed it with coconut yogurt ranch dressing we make. A couple homemade pickles to finish the plate. Abby used hummus and no tomato!)
Easy one.

I simply used my favorite gluten free sandwich bread for the bread machine recipe and made the following changes-

Substitute 1-2 cups of buckwheat for 1-2 cups of your normal gluten free flour.(this loaf was a 50/50 blend)

1 teaspoon fresh ground caraway seeds
1 teaspoon dill weed
1 teaspoon fresh ground yellow mustard seed

Substitute 1/4 cup pickle juice for an equal amount of water or milk in the recipe (I have recently posted a recipe for refrigerator pickle recipe- I used that juice)

I also used some maple syrup for some of the sugar(thought it would offer a richness since we use grade B Maple syrup)

Follow your recipe.

I am a HUGE fan of all things rye, unfortunately with 2 gluten free in the family it isn't something we get to make. I have always loved the caraway seeds throughout the bread, but the family isn't fond of biting into flavor packed seeds. I started grinding the caraway and found them more receptive.

Yesterday I was googling to see if there way anything else to add to our favorite fake Rye bread and a few of the Jewish Rye recipes called for pickle juice! Figured why not?

It turned out excellent. Packed full of flavor, and no seeds to avoid. Using buckwheat flour lends a great amount of nutrition and flavor to any sandwich loaf. It contains all 8 amino acids and quercetin which is a very popular supplement for those with allergies or mast cell disorders to help stop reactions. Here is a great link to WHfoods that shows you why should add buckwheat to your diet. For us, it makes a great substitute for the rye breads we have been missing.

I have made a few varieties of this with various bread recipes to achieve different textures and works great as well. We really like a sandwich bread with the fake rye flavoring though..

Caramel Chickpea Mudslide Sundae

As we move along learning to cook without Gluten,corn,dairy,soy, nuts, seeds, shellfish and the other zillion intolerances/allergies it is getting easier. I have learned to make enough staples that on any given day I don't have to always cook in order for Abby to eat.

This was a great example. We learned to make coconut milk vanilla ice cream and caramel early on(staples for every home, right?). Then we learned to make roasted,salted chickpeas. We now keep roasted chickpeas, roasted chickpea butter, usually some roasted chickpea butter frozen cookie dough in the freezer.

It has felt great to know that we have managed to sub, recreate our way to not missing any of the packaged foods. It gets easier.

Coconut milk vanilla ice cream
microwave caramel(I used my caramel recipe from the Samoa recipe posted a few weeks ago, I just did not add the coconut)
2 diced raw cookie dough cookies.(I freeze the cookies in balls)
1-2 baked cookies

We mixed the raw dough into the ice cream(reminded us of cookie dough ice cream minus the chocolate!). Then layered it. Easy.

TIP- cool the caramel a bit before putting ice cream on it! My ice cream was melting quicker then I could take a picture.

Monday, June 10, 2013

Yuca Dough (Gluten-free, Egg-free, Dairy-free, Soy-free, Corn-free)

I have run across recipes for yuca fritters a few times now. Popular in many South American Countries.

For the most part I have really enjoyed learning to cook with gluten free flours, except when it comes to rolled doughs. Wheat is just better for that... At this point when I see anything to do with pastry with a unique twist I usually have to give it a try. This one I wondered about. From cooking with yuca I have noticed it can be elastic, gluey and I have often wondered if it would help add elasticity to doughs.

This was great and easy dough. Messy, but good.

Out of curiosity I cooked the dough 3 ways. 1) Fried- the best. I am no fan of fried foods, but this method made them crisp, with some sourdough like elasticity - really remarkable.
2) Baked- they cooked fine(375 for 20minutes) but lost the great crisp and chewy I got through frying. They got very "crunchy".. I am tempted to play with this method a bit more to see if I can find a way to achieve a better texture.
3)boiled- just to see what would happen, I patted a thin piece of dough and pitched it into the boiling water. It held together well. The texture was different.. kind of like a boiled dumpling, but the tapioca starch when boiled left a "slimy" layer on top of the dough.. not sure about this method. It held very well in the boil so I may be tempted to re visit this to see if I can reduce the "sliminess" factor.

OF course now I am wondering if I can combine this yuca dough with other gluten free doughs to make a more elastic product.

I opted to pat these into thin pieces by hand. Next time, I will use a rolling pin to see if I can make a prettier finished product, or maybe not.. this dough was so good, no one in my family will need it to be pretty to enjoy it.

Yuca Dough
Mashed yuca(smooth dry and chilled for at least 4 hours.)
Tapioca starch.

Pour a bunch of tapioca starch on a board or your counter. Scoop about 1 cup at a time of the mashed yuca onto the starch. Then start kneading it. It will be outrageously sticky at first, and you will think for at least the first couple minutes that there is simply no way this will work, but it does- just keep kneading and kneading in the tapioca starch till you get a nice pliable ball of dough.

I simply grabbed about a golf ball sized piece and flattened it into a thin round with my hand. I filled it with feta and olives, I filled a few with "pizza like" fillings,(like dumplings, don't overfill and put the items that are more angular on the bottom and the softer stuff on top). I filled it,folded it in half and sealed with my fork(if yours won't stay sealed you can brush the edge with water to get a better seal).

I then fried these for a few minutes on each side in grapeseed oil(just a couple inches in a saucepan). They don't brown as much as wheat they will get crisp with a bit of golden brown.

Friday, June 7, 2013

Cannot Fall for the Snake Oil from Traditional Medicine or Alternative

Where previously our efforts to move forward with Abby felt like digging a hole through a Mountain with a teaspoon, now I feel we have hit a split in the road.

After a terrific visit with the family Dr. I am still left with the constant question- Primary or Secondary? I "know" it is secondary, and I have finally admitted to myself I won't rest till I find the Primary. It haunts every moment of my days and nights. It is bordering on obsessive. I want to make sure when we hit the medical road again I don't make the same mistakes again. That I pick the right Drs for Abby and honestly, the ones who will not immediately hate me for questioning EVERYTHING. I feel like I am preparing to walk into a battle, but not able to see my own failings well enough to make a great battle plan.

In many ways traditional medicine has failed Abby. It is possible she was blown off for years because I refuse to be dramatic,or maybe because she is tough. Maybe that form of medicine has failed because I have ALWAYs parented my children in a gentle way(I have no problem being the black sheep if it makes healthier happier children). When Abby had that tired body and face then no school, no social events, no dragging Abby around..Or maybe traditional medicine failed Abby because in my opinion, all Drs. should be much smarter then us and know everything! Of course that is so not fair of me to expect they know everything, but many could have done more. I grew up in a family with weird symptoms that held a few people in my family hostage but many of the odd symptoms we all learned to compensate for, so when the drs. repeatedly blew Abby off, we sucked it up and did the best we could. I have gotten over my anger and disappointment,though I admit I still have a smoldering anger that is hard to hide. I have learned to hold it in check. The general belief that modern medicine can fix everything and Drs. all know more then their patients-has been proven false too many times for me not to be upset at some level. I am upset with myself for falling for the stereo type and I am mad at them for not trying harder to be as big and smart as we need them to be.

Alternative medicine is hands down a kinder form of science. In many ways they see every issue as a whole body issue and many find it very important to find out all of the issues..Most understand that if a patient is spending the money to come see them, odds are they do not feel well and odds are they have found no answers through traditional Medicine. They believe nutrition is key. Of course they use lots of folk remedies that I actually already believe,and I appreciate that they have studied how each body system impacts the next, that you MUST find the primary, and not simply drug and cover the symptoms.. Unfortunately there are as many bad alternative Drs as there are traditional medicine Drs. The only thing that matters to some is lining their pocket.

I get it, we all need to make a living.. but you know what I am talking about.

Frankly a lot of patients who end up turning to Alternative Medicine are the many many patients who are sick and no Dr. is willing or able to help. The good alternative medicine Drs. understand often they are the last resort. Honestly, I talk to families daily who have found far more success with alternative medicine, but I am scared. In today's culture we are taught to trust the Traditional Drs and to distrust the Alternative Drs. I already don't trust Traditional Medicine, is it even possible for me to trust a different type of Dr.?

I am suspicious of ALL new Drs. 18 years of less then adequate medicine has made that a new part of my personality. Do I continue down just one path, or the other, or is it going to work if I blend both?

My biggest fear is that I am too anxious at this point to take the next step,to find a new team that knows how to help folks like us. We have turned our home upside down, I have learned to make everything(from bread to our own sausage,to coconut cheese!) and I do make everything down to her pit stick- I can keep reading,we have seen traditional Med Drs from the west coast to the east coast and many in between, but I really need a leader, I am not qualified to push for the next steps in her journey, but after 18 years I have learned that despite my lack of qualifications, I may be the only one who has the time and passion to take the job.

We are suspicious and vulnerable right now- not a great spot !

Yesterday, Abby's family Dr. was exactly what he needed to be. We asked for his leadership(of course within our rule book! LOL) and he did it! He is one of the few that has taken a deep breath and decided that though we are a red hot mess, and he cannot help the way he normally would(prescriptions)he can help us, and he does. He listens! He doesn't minimize. He tries so very hard to understand that we aren't dealing with a garden variety issue, that we as her parents know more about Abby, and he has to trust and double check our findings at the same time. Certainly no easy role to play in a patients life, I find it incredibly remarkable.

The journey isn't over. It is time to get moving again.. "find the primary, find the primary..."

I need to know. I need to know how to fight this, to keep control. I need to know what parts of this illness I cannot fix. I need to know how to help Abby understand what to expect from her funky body.

I won't however, put her through months of weekly appts again, or biopsies that stole so much precious energy again.. She cannot afford to drag her too tired and sensitive body to one appointment then to the next appt- each appointment steals from her precious stash. A wasted appointment sucks a little bit of life from her, I won't let that happen again.

If I want a different outcome this time, I MUST make different choices. The question is; what do I need to change to get a different, and more informative and helpful outcome?

I am still hopeful. I still believe we will figure out how to give Abby a more normal life. I know we have made the right choices since she has been far more stable since we opted for the long road by digging that road through the mountain with a teaspoon to help her. We made a great choice to quit blindly following the pack for the sake of not feeling alone.

But, it is time to either pull out that teaspoon and start digging at the mountain again, or time to think out of the box and create a new solutions.. I need to think, not react or a combination of both. I need to trust, but not blindly follow. I need to "see" Abby and know when to push and when to not worry, I need to be strong.

Thinking one hand can hold the teaspoon and keep digging, while the other hand scrolls articles on the computer.

We are doing a bone density test, just to make sure that what is occurring to her teeth isn't occurring in her bones. We are taking a closer look at her shrinking feet(down 2+ sizes despite stable weight- weird huh?) we are doing a "full" nutritional panel.. We can do this again, and we can and will do it better this time.

Thursday, June 6, 2013

When I Fail... From Failed to Extraordinary

(Messy casserole or bread pudding is a-okay with us!)

If you have baked with Gluten Free flours you will know that there are a couple issues. 1) gluten free dough can be tough when you try to make shaped breads and pastries. 2)It goes stale so fast!

Last month in the Food Network Magazine they shared a multi purpose sweet yeast dough recipe. Then they shared a few different ways to use that dough. One recipe was a lemon poppy seed twist. Boy, did it look delicious! Plus, one seed Abby can handle is poppy seed. She also does well with Lemon.

This weekend I decided to tackle it to see if I convert the recipe to gluten free, corn free, dairy free etc. They were "okay". As predicted they were pretty good right out of the oven, but once cooled the dough was tough and they staled by the next morning. I admit they were just ugly sad little buns :-) Ugly doesn't bother me if they taste amazing, but this was definitely something I would call a big fail on my part.
(sad buns aren't they? Far from the beautiful twists in the magazine!)

After the work I put into them I could not bring myself to just toss them, after all, the lemon glaze and homemade poppy seed filling were really delicious, it was just that(very) tough bread and ugly presentation.

For years now I have seen "overnight french toast" recipes everywhere. Really, it is just bread pudding when you look at the ingredients.

I figured why not?

We are sooooooo glad we decided to try save those tough,stale rolls- because soaked overnight and baked this morning it created an AMAZING and EASY breakfast custard.

Best, no waste! Plus, what was what I considered a failure, with a little engineering became a huge success!

You could use any stale roll, bread, danish. Since these were already quite sweet when I mixed the "french toast batter" I skipped adding any additional sugar.

Stale Gluten Free Failure Bun Custard

1 1/2 cup coconut milk(rice milk etc)
3 eggs
1 teaspoon vanilla extract(homemade)
dash or so of salt.
(if using unsweeted rolls or bread, 1/2 cup granulated sugar to batter as well)

Preheat oven to 350

I cut the rolls in half to make sure they would absorb all the milky goodness. I layered them in a greased 8 x 8 pan. I beat together the coconut milk, eggs,vanilla and salt and poured over the rolls. Covered and left in the fridge overnight. This morning I pulled it out and left it on the counter for about an hour to allow to warm up to room temperature. Baked in the 350 oven for 30-35 minutes. Sprinkled with powdered sugar(wasn't necessary,but pretty!). A hit! Or shall we call it an extraordinary save?

Wednesday, June 5, 2013

Holy Basil Pepper Salsa(tomato free) and Corn-free Tortilla Chips(gluten free, egg free, corn-free, dairy free)

It is nearly summer and the garden has all sorts of fresh peppers, and herbs..

Chips and dip are such a standard here in Texas. Honestly, half the time you go to a Mexican restaurant, you are satisfied with the chips and salsa before your meal even hits the table!

No tomatoes or cilantro for Abby. Did not stop us from making salsa though! I had planted Holy Basil this spring and it is flourishing. Holy basil has a slight peppery taste to it which I thought would substitute beautifully for the cilantro. Holy Basil is a known anti-inflammatory and has a lot of other really impressive health benefits, and it loves to grow in Texas! We often use roasted red pepper sauce in place of tomato sauce, so we figured why not a pepper based salsa?

Tomato-free Salsa-

1 finely diced Green Pepper
1 finely diced Red Pepper
1 finely diced small Onion
2 finely diced cloves of fresh garlic
2-3 finely diced Jalapeno(we leave the seeds and membranes, but we like hot!)
1 teaspoon cayenne pepper
1/2 teaspoon cumin
2 dashes salt
2 dashes Pepper
1 Tablespoon Lime juice
1 Tablespoon Lemon juice
1/4 cup water.
1/4 cup fresh chopped holy basil
OPTIONAL: green onions. Abby doesn't like them so we skipped it today.

Place all ingredients in saucepan. Cook on medium/high heat until the veggies start to lose a bit of color, but are still crisp. When cooled place in fridge and serve cold with corn-free tortilla chips.(recipe below)

Corn-free Tortilla Chips-

1 cup gluten free flour blend
1 cup chickpea flour(no need to toast, it is going to be cooked twice, beany flavor is very mellow)
1 teaspoons granulated sugar
1 teaspoon guar gum(if you are just making tortillas you should use it, but if you want to make chips with tortillas you can skip)
1 teaspoon baking powder
1/2 teaspoon pink himalayan salt
3 tablespoons palm shortening
3/4 cup cold water, plus more as needed

(Oil,salt, and additional flour also needed)

Mix together in bowl, gf flour,chickpea flour,sugar,guar gum,baking powder, salt. Cut shortening into flour until you get pea sized dough. Add water till dough holds together, and is a bit sticky still. Allow dough to rest 20 minutes covered.

Form 8-10 sized balls. I sprinkled my hands liberally with gf flour to keep the dough from sticking. Cover balls.

Heat 10-inch cast iron skillet over high heat. On a piece of parchment paper sprinkle it with gf flour. Place ball on floured parchment and smash down. Sprinkle top of smashed dough with a bit more gf flour. Cover with another piece of parchment. Roll till thin(thin tortilla's make better baked chips.)

Peel parchment apart(my dough generally sticks to the top piece.). Flip parchment onto hand and place dough side down into hot skillet. Gently press down the edges of the tortilla through the paper(caution, it is hot, move fast!) Give it a second or two and carefully peel parchment off dough. It should release easily. Cook for aprox 1 minute(till you see the surface bubble)and flip. Cook on other side aprox 1 minute.

To Make Chips: Preheat oven to 350
I cut each tortilla into wedges. I place the wedges on a cookie sheet. I spritz each piece with grapeseed oil and some
fresh ground salt. Bake for 6-7 minutes on the first side. Remove from oven and flip pieces. Oil and salt and put back in oven for additional 6-7 minutes. (watch after 5 to make sure they are browning too much.)

Keep in airtight container.
NOTE: I find I am able to reuse just 2 pieces of parchment to make all of the tortilla's.

A Cookbook-Team Lissy Loo

A family that is on a few of my various support groups has taken the time to put together a cookbook. They collected recipes from many in the Mito Community.(I missed that part!)

I admit, I just cannot resist a cute kid- and when they asked if I would like to buy one? How could I not?

Team Lissy Loo- We all wish you the very best!

Kelly Curley
Each cookbook is $10.00 plus 5.60 shipping and handling.

I thought 10.00 for a cookbook full of recipes given in support and friendship was a very fair price.

Cannot wait to see the recipes of what other folks eat, though kind of betting I won't find yuca,nofu or tamarind! LOL This very much reminds of all the great church ladies cookbooks I have collected. Same idea, they would collect their best recipes and make a cookbook and sell the cookbooks for fundraising. I have a few vintage books that have provided some of my very favorite recipes.
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