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.

Monday, September 30, 2013

If I Ever Get Desperate, I Can Just Eat Kibble


Last night we were watching TV together and over an hour of time we saw a few dog food commercials. We were all teasing that we bet that the dog food would be safer for Abby then a lot of other "processed" foods. Abby said based on the commercials "If I ever get desperate and cannot find any safe foods, I can just eat Kibble, probably a lot safer then a lot of the people choices out there" At first we thought it was pretty funny, but then we started to think about it, and to our shock, she probably would be better off eating dogfood over what most humans are being fed.

Of course this started a google search for various foods online what the ingredients were. We found some surprises. We were pretty horrified in general that when we compared a number of human foods to dog foods, we could not pronoun most of the chemical ingredients in the "human" food, where with the dog food for the most part we found far fewer chemicals and corn.

Guess Abby is right- if she ever was desperate she would be better off with the kibble then a lot of other choices. The only thing wrong with the kibble for her is the fortified vitamins, those are corn derived and she reacts to those.

I copied 5 sets of ingredients below- which one would you eat if you had no other choice? Read through the ingredients and pick the one you think is safest. (answers at the bottom)


1)Textured vegetable protein (soy protein concentrate, soy protein isolate, wheat gluten, water for hydration), water, enriched wheat flour (flour, niacin, reduced iron, thiamin mononitrate, riboflavin, folic acid), bleached wheat flour, corn oil, cornstarch, contains 2 percent or less of wheat starch, salt, methylcellulose, modified corn starch, dextrose, autolyzed yeast extract, potassium chloride, natural and artificial flavors from non-meat sources, sugar, maltodextrin, disodium inosinate, soybean oil, hydrolyzed soy protein, onion, paprika, dried yeast, inulin from chicory root, caramel color, tapioca dextrin, xanthan gum, sodium alginate, spices, yellow corn flour, paprika extract for color, annatto extract for color, baking soda, garlic, tomato powder, celery extract, wheat fiber, lactic acid, safflower oil, barley extract, citric acid, niacinamide, egg whites, nonfat dry milk, succinc acid, disodium guanylate, iron, thiamin mononitrate, pyridoxine hydrochloridae, riboflavin, vitamin B12



2)Chicken stock, potatoes (with sodium acid pyrophosphate to protect color), carrots, peas, heavy cream, modified food starch, contains 2 percent or less of wheat flour, salt, chicken fat, dried dairy blend (whey, calcium caseinate), butter (cream, salt), natural chicken flavor with other natural flavors (salt, natural flavoring, maltodextrin, whey powder, nonfat dry milk, chicken fat, ascorbic acid, sesame oil, chicken broth powder), monosodium glutamate, liquid margarine (vegetable oil blend [liquid soybean, hydrogenated cottonseed, hydrogenated soybean], water, vegetable mono and diglycerides, beta carotene), roasted garlic juice flavor (garlic juice, salt, natural flavors), gelatin, chicken pot pie flavor (hydrolyzed corn, soy and wheat gluten protein, salt, vegetable stock [carrot, onion, celery], maltodextrin, flavors, dextrose, chicken broth), sugar, mono and diglycerides, spice, seasoning (soybean oil, oleoresin turmeric, spice extractives), parsley, citric acid, caramel color, yellow 5, enriched flour bleached (wheat flour, niacin, ferrous sulfate, thiamin mononitrate, riboflavin, folic acid), hydrogenated palm kernel oil, water, nonfat milk, maltodextrin, salt, dextrose, sugar, whey, natural flavor, butter, citric acid, dough conditioner, l-cysteine hydrochloride, potassium sorbate and sodium benzoate (preservatives), colored with yellow 5 & red 40. Fresh chicken marinated with: salt, sodium phosphate and monosodium glutamate. Breaded with: Wheat flour, salt, spices, monosodium glutamate, leavening (sodium bicarbonate), garlic powder, natural flavorings, citric acid, maltodextrin, sugar, corn syrup solids, with not more than 2 percent calcium silicate added as an anti caking agent OR Fresh chicken marinated with: Salt, sodium phosphate and monosodium glutamate. Breaded with: Wheat flour, salt, spices, monosodium glutamate, corn starch, leavening (sodium bicarbonate), garlic powder, modified corn starch, spice extractives, citric acid, and 2 percent calcium silicate added as anticaking agent OR Fresh chicken marinated with: Salt, sodium phosphate and monosodium glutamate. Breaded with: Wheat flour, sodium chloride and anticaking agent (tricalcium phosphate), nonfat milk, egg whites, Colonel's Secret Original Recipe Seasoning OR potato starch, sodium phosphate, salt, Breaded with: Wheat flour, sodium chloride and anti-caking agent (tricalcium phosphate), nonfat milk, egg whites, Colonel's Secret Original Recipe Seasoning OR potato starch, sodium phosphate, salt Breaded with: Wheat flour, salt, spices, monosodium glutamate, leavening (sodium bicarbonate), garlic powder, natural flavorings, citric acid, maltodextrin, sugar, corn syrup solids, with not more than 2 percent calcium silicate added as an anticaking agent OR potato starch, sodium phosphate, salt Breaded with: Wheat flour, salt, spices, monosodium glutamate, corn starch, leavening (sodium bicarbonate), garlic powder, modified corn starch, spice extractives, citric acid, and 2 percent calcium silicate added as anticaking agent OR seasoning (salt, monosodium glutamate, garlic powder, spice extractives, onion powder), soy protein concentrate, rice starch and sodium phosphates. Battered with: Water, wheat flour, leavening (sodium acid pyrophosphate, sodium bicarbonate, monocalcium phosphate), salt, dextrose, monosodium glutamate, spice and onion powder. Predusted with: Wheat flour, wheat gluten, salt, dried egg whites, leavening (sodium acid pyrophosphate, sodium bicarbonate), monosodium glutamate, spice and onion powder. Breaded with: Wheat flour, salt, soy flour, leavening (sodium acid pyrophosphate, sodium bicarbonate), monosodium glutamate, spice, nonfat dry milk, onion powder, dextrose, extractives of turmeric and extractives of annatto. Breading set in vegetable oil



3)Seasoned Cooked Chicken Meat (Cooked Chicken Dark and White Meat, Water, Sodium Lactate, Salt, Isolated Soy Protein, Sodium Tripolyphosphate, Mixed Tocopherols Added to Retain Freshness), Tomatoes (Water, Tomato Paste), High Fructose Corn Syrup, Water, Vinegar, Brown Sugar, Contains 2% or Less of Textured Soy Protein Concentrate, Molasses, Salt, Modified Cornstarch, Wheat Gluten, Natural Smoke Flavor, Spice and Coloring, Cultured Dextrose, Onion Powder, Sodium Diacetate, Partially Hydrogenated Soybean Oil, Garlic Powder, Maltodextrin, Hydrolyzed Soy Protein, Natural Flavor, Tamarind (Corn Syrup, Prune Juice Concentrate, Extractives of Tamarind, Water, Tartaric Acid, Caramel Color, Citric Acid, Molasses), Soy Lecithin, Yeast Extract, Preserved with Propionic Acid, Potassium Sorbate, Sodium Benzoate, Erythorbic Acid and Nisin Preparation.


4)Chicken Meal,Peas,Green Lentils,Chicken Fat (Preserved with Mixed Tocopherols, a Source of Vitamin E),Pea Fiber,Sunflower Oil,Natural Flavors,Salt,Minerals (Zinc Proteinate, Iron Proteinate, Copper Proteinate, Manganese Proteinate, Calcium Iodate),Vitamin E Supplement
Vitamins (Betaine Hydrochloride, Vitamin A Supplement, Niacin Supplement, Calcium Pantothenate, Beta Carotene, Vitamin B12 Supplement, Vitamin D3 Supplement, Riboflavin Supplement, Pyridoxine Hydrochloride, Thiamine Mononitrate, Biotin, Folic Acid)
Rosemary Extract




5)Corn Syrup Solids (52%), Refined Vegetable Oil (Palm Kernel and/or Coconut Oil (8%), Canola Oil (8%), High Oleic Safflower Oil (8%)), L-Arginine (2.4%), L-Glutamine (2.3%), L-Lysine L-Aspartate (2%), and less than 2% of each of the following: Tripotassium Citrate, Calcium Phosphate Dibasic, L-Leucine, L-Phenylalanine, L-Proline, Silicon Dioxide, L-Valine, Glycine, L-Isoleucine, N-Acetyl-L-Methionine, L-Threonine, Mono and Diglycerides, Sodium Chloride, L-Histidine, L-Serine, L-Alanine, Magnesium Acetate, Calcium Phosphate Tribasic, Choline Bitartrate, L-Tryptophan, L-Tyrosine, Diacetyl Tartaric Acid Esters of Mono and Diglycerides, M-Inositol, L-Ascorbic Acid, L-Cystine, Propylene Glycol Alginate, Taurine, Ferrous Sulfate, L-Carnitine, Zinc Sulfate, DL-Alpha Tocopheryl Acetate, Niacinamide, Calcium D-Pantothenate, Manganese Sulfate, Cupric Sulfate, Riboflavin, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Vitamin A Acetate, Folic Acid, Potassium Iodide, Chromium Chloride, Sodium Molybdate, Sodium Selenite, Phylloquinone, D-Biotin, Vitamin D3, Cyanocobalamin.

































1) Vegan Chicken Nuggets 2)Famous Chain Chicken Pot Pie 3)LLoyd's Shredded Chicken with BBQ Sauce 4)California Natural grain-free Chicken Meal Formula 5)Neocate Jr Unflavored(flavored has a lot more ingredients)

Sunday, September 29, 2013

Food Fads- If it doesn't make you Sick- EAT IT!

Paleo

GAPS

Gluten-free

Raw

Vegan

Vegetarian

Real

Elemental

Anti-inflammatory

Low Histamine

Low Allergen

Low Oxalate

Grain-free

Low Fat

Low Cholesterol

Low Sugar

Low Calorie

Vitamins

Supplements

I could probably add another 10-15 if I a took a minute..


In the past few months I am pleased and distraught to see so many people making a huge effort to improve their diet.

Often we can get carried away.

When Drs. cannot or won't help, when the medications cause more issues then then the disease, as patients we are left with our diet and lifestyle to work with to improve our quality of health.

Clearly if you are allergic to something- Don't eat it! If your Dr. says don't eat it? Then Don't eat it!


On both a Mastocytosis support group and corn allergy support group, that new book "Grain Brain" is being hotly discussed, and pushed.

We all remember the 80's when eggs and red meat were sending us all to early graves.(Eggs are now perfect nutrition, go figure)

Or the hatred of all sugar.(maple syrup though is fine? As is honey? How about that super processed Stevia liquid and agave? )

So, in hopes of better health, we start cutting foods.

We cut all the allergens and still feel bad, so someone suggests we cut gluten. We do that too. Still feel bad? Must be all those inflammatory foods you eat- say goodbye to the potato..did you try removing Oxalates yet? Still sick? Cut grains.. Still sick? Remove histamine and histamine triggers..

Pretty soon you are down to 3 foods- and guess what? You are still SICK and now you are sick and malnourished.. You might not even feel better. Despite the fist full of vitamins and supplements you take, you are still SICK.. What else to cut?


Don't get me wrong, we used an elimination diet with Abby. Some foods make her sick. Very Sick. We know that many of the preservatives and colors in foods can be neurotoxins or poisons and often make those who are already sick, sicker. (MSG?)

But, she LOVES potatoes, and they LOVE her. She has no markers in her blood work that show an issue with inflammation. We tried without potatoes, and no better, so guess what? She eats potatoes.(which are packed with necessary nutrition)

How about lemons? Say lemon on a Mast disease support group and they will hiss at you like you are trying to poison them! Fact is, yes, some will not do well with lemon, but many do just fine. Lemons provide a great source of nutrition and flavor. If doesn't make you sick, eat it.


I fully support diet changes for better health.


I don't support removing foods unless they make you sick, or your Dr recommends it.

Neither Derek nor Abby tolerate gluten, so they don't eat it because it makes them sick. Sara and I eat it with gusto! Wheat has terrific nutrition, why get rid of it? My great-grandparents ate it and lived full lives. I bet if I did 23andMe there would probably be some mutation in there somewhere that suggests celiac "could" be an issue- should I cut wheat when it fuels my body well? No.

Taking vitamins and supplements are a very poor substitution for the real thing. Study after Study PROVE that synthetic vitamins are not absorbed as well as the real deal. Latest reports indicate that the majority of companies making vitamins for American's are not necessarily honest and forthright about what they add or don't add to the pills. Synthetic vitamins don't come with cofactors. You can overdose on vitamin pills, but not on vitamins that occur naturally in the food you eat.

I know folks paying hundreds of dollars on supplements, and they are still sick. Still have bad nutritional scores and feel no better.


If you take a vitamin and you feel better? If your Dr. recommends it? Take it. But don't pop vitamin pills because someone on some group says you "should."


Feel better eating like a caveman? More power to ya! Still feel just as bad eating Paleo as you did before? Try something else.


1 diet change can takes months to show improvement. 1 diet change can take months to show unintentional damage.

I am watching a multitude of eating disorders emerge in a number of populations. Food Fads can be dangerous and can cause more health issues then reduce health issues. Remember how our parents always asked us, "Just because everyone else is jumping off the bridge, should you?" We are a fat phobic nation now. Obesity is a huge issue, and so is malnourishment in both thin and obese patients. Start cutting fats, sugar's, grain's and presto, you are thin, but are you healthy? Are all these food fads based on real health or on fat phobia?


Corn is a huge issue for Abby. At first she was the only one that went without corn, but slowly we are all eating less corn. The few times I have tried to eat corn now? It makes me sick. So, I don't intentionally add it to my diet, but that doesn't make it wrong for you. You love corn? Your bodies likes it? Eat it.


Elemental formula's? The Drs. and Sales Representatives will tell you it is IMPOSSIBLE to be allergic. They are wrong. I cannot tell you how many patients I have talked to now that cannot tolerate them. These poor folks are left to puree foods to eat, mix their own homemade formula's. I also have talked to families where elemental formula's have made their lives better, their child healthier.

At the end of the day, DO NOT stop eating something because of a food fad. You need to think about the nutrition you are losing by cutting out a huge food group.


If it doesn't make you sick- EAT IT.

Remember, children need carbs,fats,proteins and vitamins to grow properly. Adults need fuel but tend to be a little more flexible based on health conditions and preferences, but you can be 300 pounds and be malnourished, you can be 95 pds and be even more malnourished.


Say NO to food fads, eat to be healthy.

Making healthy changes to your diet and lifestyle can help you,probably not cure you. If you are celiac even if you eat gluten -free, you will always be celiac. Have mast cell issues? Some seem to do great with a few environmental and diet changes, for just as many, it doesn't help and they are still sick and no amount of food and lifestyle changes is going to make them better. So far, no one has cured Mito.

Use your common sense. Find a Dr. you trust. Quit jumping off the bridge just because everyone else does! The more complex your health issues are, the more individual and complex your dietary needs become.



Friday, September 27, 2013

Some New Vocab

Newest part of Abby's journey has brought some new vocabulary-


Holistic
:(Webster dictionary):Full Definition of HOLISTIC

1
: of or relating to holism
2
: relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts

IgG:(Wikipedia):Immunoglobulin G (IgG) is an antibody isotype. It is a protein complex composed of four peptide chains — two identical heavy chains and two identical light chains arranged in a Y-shape typical of antibody monomers. Each IgG has two antigen binding sites. Representing approximately 75% of serum immunoglobulins in humans, IgG is the most abundant antibody isotype found in the circulation.[1] IgG molecules are synthesized and secreted by plasma B cells.

MCAS: Mast Cell Activation Syndrome


Mast Cells:(Encyclopedia Britannica) mast cell, tissue cell of the immune system of vertebrate animals. Mast cells mediate inflammatory responses such as hypersensitivity and allergic reactions. They are scattered throughout the connective tissues of the body, especially beneath the surface of the skin, near blood vessels and lymphatic vessels, within nerves, throughout the respiratory system, and in the digestive and urinary tracts. Mast cells store a number of different chemical mediators—including histamine, interleukins, proteoglycans (e.g., heparin), and various enzymes—in coarse granules found throughout the cytoplasm of the cell. Upon stimulation by an allergen, the mast cells release the contents of their granules (a process called degranulation) into the surrounding tissues. The chemical mediators produce local responses characteristic of an allergic reaction, such as increased permeability of blood vessels (i.e., inflammation and swelling), contraction of smooth muscles (e.g., bronchial muscles), and increased mucus production.

Degranulation:(Wikipedia):Degranulation is a cellular process that releases antimicrobial cytotoxic molecules from secretory vesicles called granules found inside some cells. It is used by several different cells involved in the immune system, including granulocytes (neutrophils, basophils and eosinophils) and mast cells. It is also used by certain lymphocytes such as natural killer (NK) cells and cytotoxic T cells, whose main purpose is to destroy invading microorganisms.


DNA Methylation
:(Wikipedia)DNA methylation is a biochemical process involving the addition of a methyl group to the cytosine or adenine DNA nucleotides. DNA methylation stably alters the expression of genes in cells as cells divide and differentiate from embryonic stem cells into specific tissues. The resulting change is normally permanent and unidirectional, preventing one organism from reverting to a stem cell or converting into another type of tissue. DNA methylation is typically removed during zygote formation and re-established through successive cell divisions during development. However, the latest research shows that hydroxylation of methyl groups occurs rather than complete removal of methyl groups in zygote.[1][2] Some methylation modifications that regulate gene expression are inheritable and cause genomic imprinting.
In addition, DNA methylation suppresses the expression of endogenous retroviral genes and other harmful stretches of DNA that have been incorporated into the genome of the host over time. DNA methylation also forms the basis of chromatin structure, which enables a single cell to grow into multiple organs or perform multiple functions. DNA methylation also plays a crucial role in the development of nearly all types of cancer.[3]
DNA methylation at the 5 position of cytosine has the specific effect of reducing gene expression and has been found in every vertebrate examined. In adult somatic cells (cells in the body, not used for reproduction), DNA methylation typically occurs in a CpG dinucleotide context; non-CpG methylation is prevalent in embryonic stem cells,[4][5][6] and has also been indicated in neural development.[7]

MTHFR:(Genetics Home Reference)Reviewed July 2011
What is the official name of the MTHFR gene?
The official name of this gene is “methylenetetrahydrofolate reductase (NAD(P)H).”
MTHFR is the gene's official symbol. The MTHFR gene is also known by other names, listed below.
Read more about gene names and symbols on the About page.
What is the normal function of the MTHFR gene?
The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.
How are changes in the MTHFR gene related to health conditions?
homocystinuria - caused by mutations in the MTHFR gene
At least 40 mutations in the MTHFR gene have been identified in people with homocystinuria. Most of these mutations change single amino acids in methylenetetrahydrofolate reductase. These changes impair the function of the enzyme, and some cause the enzyme to be turned off (inactivated). Other mutations lead to the production of an abnormally small, nonfunctional version of the enzyme. Without functional methylenetetrahydrofolate reductase, homocysteine cannot be converted to methionine. As a result, homocysteine builds up in the bloodstream, and the amount of methionine is reduced. Some of the excess homocysteine is excreted in urine. Researchers have not determined how altered levels of homocysteine and methionine lead to the health problems associated with homocystinuria.
anencephaly - associated with the MTHFR gene
Several variations (polymorphisms) in the MTHFR gene have been associated with an increased risk of neural tube defects (NTDs), a group of birth defects that occur during the development of the brain and spinal cord. Anencephaly is one of the most common types of neural tube defect. Affected individuals are missing large parts of the brain and have missing or incompletely formed skull bones.
The most well-studied polymorphism related to the risk of neural tube defects changes a single DNA building block (nucleotide) in the MTHFR gene. Specifically, it replaces the nucleotide cytosine with the nucleotide thymine at position 677 (written as 677C>T). This variant, which is relatively common in many populations worldwide, produces a form of methylenetetrahydrofolate reductase that has reduced activity at higher temperatures (thermolabile). People with the thermolabile form of the enzyme have increased levels of homocysteine in their blood.
It is unclear how variations in the MTHFR gene increase the likelihood of neural tube defects. However, the increased risk may be related to differences in the ability of methylenetetrahydrofolate reductase to process folate. A shortage of this vitamin is an established risk factor for neural tube defects.
spina bifida - associated with the MTHFR gene
Polymorphisms in the MTHFR gene are also associated with an increased risk of spina bifida, another common type of neural tube defect. In people with this condition, the bones of the spinal column do not close completely around the developing nerves of the spinal cord. As a result, part of the spinal cord may stick out through an opening in the spine, leading to permanent nerve damage.
As described above, variations in the MTHFR gene may increase the risk of neural tube defects by changing the ability of methylenetetrahydrofolate reductase to process folate.
other disorders - increased risk from variations of the MTHFR gene
Polymorphisms in the MTHFR gene have also been studied as possible risk factors for a variety of common conditions. These include heart disease, stroke, high blood pressure (hypertension), high blood pressure during pregnancy (preeclampsia), an eye disorder called glaucoma, psychiatric disorders, and certain types of cancer. The 677C>T polymorphism in the MTHFR gene has also been suggested as a risk factor for cleft lip and palate, a birth defect in which there is a split in the upper lip and an opening in the roof of the mouth. Studies of MTHFR gene variations in people with these disorders have had mixed results, with associations found in some studies but not in others. Therefore, it remains unclear what role changes in the MTHFR gene play in determining the risk of these complex conditions.

Serum Sickness:(MedlinePlus):Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain injected proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.

SubQ(Wikipedia):A subcutaneous injection is administered as a bolus into the subcutis,[1] the layer of skin directly below the dermis and epidermis, collectively referred to as the cutis. Subcutaneous injections are highly effective in administering vaccines and medications such as insulin, morphine, diacetylmorphine and goserelin. Subcutaneous, as opposed to intravenous, injection of recreational drugs is referred to as "skin popping." Subcutaneous administration may be abbreviated as SC, SQ, sub-cu, sub-Q or subcut. Subcut is the preferred abbreviation for patient safety.[2]

Wednesday, September 25, 2013

Bread Pudding with Vanilla Caramel Sauce(gluten-free, dairy-free, corn-free, soy-free, nut and seed-free)

Sorry, no pic's- my poor old camera(10 years old!) finally died. Since bread pudding is not exactly a pretty dish probably just as well. This was wonderful served hot with the sauce and a scoop of coconut milk vanilla ice cream.

I have probably posted a zillion bread puddings at this point, but since I refuse to throw out stale gluten free baked goods, bread pudding either sweet or savory is something that I make probably a little too often.




Bread Pudding:
5 cups (1/2-inch) gluten free bread cubed
1 1/2 cup coconut yogurt
1/2 cup granulated sugar
1 tablespoon vanilla extract
1 teaspoon ground allspice
1/4 teaspoon salt
3 large eggs

Sauce:
3/4 cup packed light brown sugar(domino's)
1 tablespoon palm shortening(Spectrum)
8 tablespoons coconut yogurt(homemade)
1 teaspoon vanilla extract(homemade using potato vodka,store bought use "grain alcohol" which is corn based)
1/8 teaspoon salt(we have been using pink himalayan)
Cooking spray(I use grapeseed in a Mr. Mister) (Tj's grapeseed seems to be tolerated, we have used HEB brand as well)


1. Preheat oven to 350°.

2. To prepare bread pudding, arrange bread in a single layer on a baking sheet. Bake at 350° for 8 minutes or until lightly toasted.

3. Combine the rest of the bread pudding ingredients in a large bowl; mix until well combined. Add lightly toasted bread cubes. Let stand 20 minutes, occasionally pressing on bread to soak up the milk mix.

4. To prepare sauce, combine brown sugar,coconut yogurt and palm shortening in a small saucepan over medium-high heat; bring to a boil. Simmer 2 minutes or until sugar dissolves, stirring frequently. simmer 10 minutes or until reduced to about 1 cup(or don't reduce, a thin sauce is great as well.). Remove pan from heat. Stir in remaining 1 teaspoon vanilla, and 1/8 teaspoon salt. Keep warm.

5. Spoon half of bread mixture into a 9 x 5–inch loaf pan coated with grapeseed oil(or other grease of choice). Drizzle 3 tablespoons of the sauce over bread mixture. Spoon remaining half of bread mixture over sauce. Bake at 350° for 45 minutes or until a knife inserted in the center comes out clean. Serve warm sauce with bread pudding.

Sunday, September 22, 2013

Butterscotch Pudding-(gluten-free, dairy-free, corn-free, soy-free, nut free)





Abby is still recovering from the last dentist appointment and the IVIg.. She still has a bruise and a slight rash on her leg from the SubQ. I tell ya, she heals soooo slowly. It is a reminder to us of exactly how differently we need to do things for her. Believe it or not, Abby is considering trying it again, at the right dose this time, and when she is recovered a bit more. When she is struggling from flares like this, it is really important for her to have sugar. Many Mito folks get their sugar in their supplemental/elemental formula's(up to 50 percent sugars)or in their IV's or TPN, and Gatorade is recommended. Sugar is easy for for bodies to use quickly. A little bit of simple carb before each meal goes a long way with Abby, especially when she is flared.


Abby is a huge fan of pudding. She has developed a taste for it when it is steaming hot. In the last year her stomach has decided that anything cold is no friend. So, hot pudding it is around here. At first, I did not share her passion,but admittedly I too now will sneak a bowl of hot pudding and inhale it! The part I dislike about making pudding is tempering the eggs. Somehow no matter how careful I am I always get a tiny bit of scramble. I now automatically strain it since a 50/50 chance you might get a bit of chewy egg. Which means more dishes.. It really is amazing how many dishes I use to make pudding. Another thing that irks me is separating the eggs. I don't mind separating the eggs, but it just seems that too often I forget about the egg whites and they go to waste.


This is delicious. Who doesn't like butterscotch? Especially when you can no longer have chocolate? I can see using this for a filling in a cake, hot with a blondie brownie, scoop of coconut milk ice cream and some caramel for a sundae.. This has got to be our new favorite. IT is however very rich. The best part of this pudding though? No tempering the eggs. No separating the eggs. No wasted egg white.





Butterscotch Pudding


4 tablespoons palm shortening
1 cup packed dark brown sugar
3/4 teaspoon pink himalayan salt
3 tablespoons potato starch(or gluten free flour will work fine)
2½ cups fullfat coconut milk(we have cut this with rice milk for the sake of reducing fat that she struggles to digest and it works fine)
2 large eggs
1 teaspoon homemade vanilla extract


1. Melt the palm shortening in a medium-sized saucepan. Add the dark brown sugar and salt, then stir until the sugar is well-moistened. Remove from heat.

2. In another bowl, whisk together the potato starch with about 1/4 cup of the milk until smooth, then whisk in the eggs.

3. Slowly pour the remaining coconut milk into the melted brown sugar, whisking constantly, then whisk in the potato starch mixture as well.

4. Return the pan to the heat and bring the mixture to a boil, whisking frequently. Once it begins to bubble, reduce the heat to a low simmer and continue to cook for one minute, whisking the whole time, until the pudding thickens.

5. Remove from heat and stir in the vanilla. If not smooth looking, blend as indicated above.

Chill. You can give it a good whisk before serving.

Saturday, September 21, 2013

Mitochondrial Disease Awareness: It is your Mito

There is still so little known.

Almost impossible to make a prognosis

No two patients are alike

No staging like cancer

Few Drs.

Often invisible.

No one seems to know what it is..

little support




This journey takes a terrible toll on families. It strips dreams. It strips families. It limit's social activities.



Yet, it is your Mito, and you have many opportunities to fill your glass instead of empty it. It is not all bad. You have choices on every step of this journey. In some ways we have more choices when we are no longer are confined by the social restrictions of our past social circles,more choices in how we opt to live our lives. When the world see's you as a lost cause? That gives you freedom you had no idea existed.

Abby see's her glass as half full. She has taught the rest of us how much we were missing out on, how much of life we had grown to ignore.


It is our journey, her journey.

It isn't easy, it is very hard, but we are learning the best things in life are the things you work hardest to earn.


Abby has gifted us, taught us.


Our glass is half full- is yours?


Friday, September 20, 2013

Mitochondrial Disease Awareness Day 6- It is About the MONEY

Like every other disease, it is about the money.

No money, few specialists

No money, few medications

No money, little research

No money, little support from society

.....


vitamins and supplements

safe food

medically necessary equipment

co-pays and deductibles

time..



It is about the money.


The more medically complex, the greater the costs.


Or on the other hand you can be on the mild spectrum, and diagnostics to hunt an elusive diagnosis over the span of many years can be just as expensive.


Did I mention having to travel? We travel for a few Specialists. Airfare, hotels... yep, takes money too.


Realistically, as parents it is just expensive to have a child these days. Be it a talented gymnast or a child with a rare disease, raising kids in America is costly.

With a healthy kid you can forecast your budget. You can save based on generalities. We have an idea of the approximate costs with a healthy child. With a sick kid? Well, you have no idea. You have to manage to pay the medical bills and the regular bills and you must start saving. When you know your child will likely be sickly for the rest of their lives, you have to also consider putting money aside for when you are gone. For some this is impossible, for some this at best is very difficult. Very few in America have the resources to know when they are gone their child will be cared for.. the rest of us don't sleep worrying a dark,dirty, abusive adult care home paid for by the State is all that would be provided.

Money is the second biggest issue a Mito family deals with daily.

During Mito Awareness Week I usually grit my teeth. Part of the focus is hunting for the perfect package to sell the masses, to get the healthy ones to open their pocketbooks and write a check. Which family will portray the perfect portrait of the "story" that will break hearts and make folks dig deep in their pockets? Which patient has enough drama to catch the attention of the public? American's usually love the underdog, but these days it takes a lot more then a true need to get support. I don't like it, but I also understand it is simply how it is done now.. if you want donations you have to give them a reason to donate. So we search for those stories. We hunt to find that perfect patient wrapped in perfect wrapping to melt the hearts of American's and get them to crack open those checkbooks. Marketing, selling, putting lipstick on a pig- not my area of strength, I avoid it all usually. Though I admit, those abused, stray dog and cat commercials on Animal Planet where Sarah Maclachlan is singing? - well I will admit to muting the song, changing the channel, otherwise I am running for my wallet, wondering if I can run up to the SPCA and drop off food, or if I won the lottery, how much would I donate??? So I get it. I am a victim of great Marketing. It works. It is about the Money. It takes money to pay employees to run the UMDF. It takes money to entertain potential donors. It takes money to pay attorneys and accountants.. It takes money to make brochures and posters..all to make money to pay researchers.. then what about the patients who are unable to care for themselves? They need money too.

I hate that it is all about the money.. it reminds of when suddenly Thanksgiving hasn't even happened yet and every store is decked out in Christmas decor, hands out to donate for this cause or another... But I admit it is about the Money. I don't like the way the "system" is stacked ( Have I told you how I hate the Pink campaign??? I won't buy anything that is even the color of pink anymore), I don't like that we have to "sell" patients stories and spin them to manipulate the heartstrings- but grudgingly I admit we don't have much choice in these times.

So my thanks to those who understand this system, and are willing to dance to make it happen. Mito Awareness is about the Money.

Let us not forget though, money is only the second most important issue. At the end of the day, that money is for the patient.



Thursday, September 19, 2013

Mitochondrial Disease Awareness Day 5: Prognosis UNKNOWN


Abby doesn't have a prognosis.


Abby has a slew off oddball findings. We still don't know which is causing what and/or why. Unique.


Many with Mito really don't have a prognosis.


There are a few that are terminal. There are some where Mito will take their life. This happens most frequently when diagnosed in the first year of life. That doesn't mean all diagnosed before 1 year will have a terminal prognosis- Abby had poor fetal movement, and clearly issues though mild in the first year-


It is russian roulette. It depends on how, why, where. A bout of the flu. A family history of asthma. Lung involvement. Brain involvement. Acute. Or fader. Bladder. Liver. Muscle. kidney. Primary. secondary. Few know a prognosis, we can guess... but for many, prognosis is unknown.


I think the term "life threatening" fits best when applied to the general population. For many patients pneumonia, flu, or a zillion other diseases that healthy folks deal with fine can cause enough damage to "threaten" the life of a Mito patient.


Though there is no prognosis, that doesn't mean no problems. It means we don't have a clue if she will get better or worse. You can see that something has pinged various systems in Abby, but not enough to disable the various systems. Just enough to let us know something is wrong.

Abby got better before, and we stand by believing given time, care, gentle handling we can help her get better again.


There are tons of diseases that have no cure and an unknown prognosis and those patients live long full lives.

Mito is no different. Unknown- waiting for us to live. Not waiting for the other shoe to drop.


You can wait around for bad things to happen, or push forward and make life happen.

At best Drs. can guess. Really though, we don't know the prognosis.

Don't let Mito define you, you define Mito.

For Abby that means, she is unique, delicate. Strong.

Every person has 52 cards to play in their life. Right now Abby is stuck playing the low point cards, but she has the same amount of high point cards as anyone else. Someone else may play all their high point cards first, but we all only have 4 aces- we do our best to play through the bad hands and hold out for those full house's and 4 of kinds- you have to have faith that the cards are all there waiting to be played, but what is unknown is when and in what order they will be played. That is no different then anyone else. The healthiest person could walk out there door today and die in a car accident. The sickest Mito patient might respond well to a treatment and go on to live a full life. All depends on how the cards were shuffled-

Prognosis unknown, and waiting for that 4 of kind.



Wednesday, September 18, 2013

Mitochondrial Disease Awareness Day 4- It is About the Blogs

Each family who walks this journey has likely suffered at least a few things in common, and much more that is very different from one another.


Yet, each of us has suffered that moment where we all felt terribly alone.


Sure, you can read about Mitochondrial Disease at the UMDF, or MitoAction. You can ask a zillion questions of your Mito Specialist and drive their nurses nuts with incessant questions, but no matter who you reach out to, no matter how many questions you ask, there will be that moment(or many) where you feel more alone in your fear,confusion, anxiety,and your pain then from any other challenge you have faced in your life.


At that moment, the immensity of what lays before you with caring for a child with Mito, or being a Mito patient was so overwhelming I cannot possibly write well enough to describe it.. but if you have been there you know what I mean. It is different then depression. Different then anxiety. It is this incredibly perplexing feeling of everything and nothing, of losing control but being forced to have more control then ever. Where you are suddenly no longer the family you thought you were. Where suddenly your own extended family looked at you with either such pity it took your breath or as if you had grown two heads. You wake up confused, it doesn't even feel like the same universe, each moment you battle to get your footing to move forward like everything is normal, Where you dare not mention the word "Mito" to your friends one more time because you know they will stop answering your phone calls because they cannot stand hearing about it one more time. When you know each Dr. appt, each little cold, each dental appointment were about to become epic battles.. Where your dreams were stripped from you so quickly you barely blinked and they were gone.

It felt like the end of the world for me. My nerves were shot. I swear I could not remember how to put on my shoes. Where I could not look at anyone without a horrid feeling that I might sob(I don't cry, like ever, well maybe every 10 years or so, so the feeling of bursting into to tears is more horrifying to me then falling off a building)..

I was so alone
.


What was in our future? Would she finish college? Get married? Even date? Ever even drive? What type of friends could she have? Could she grow into a complete person when her body was broken? Who would love her the way I do? How would I feed her? Who would understand? How would we get her through the relentless appointments? What did it all mean? Would she get worse? Could she get better?

Then, when I thought for sure that I truly was alone,alone and lost, I found a blog.

I started searching and finding more and more Mito blogs. Each one I read offered me comfort. For the most part, no one else had the same journey as Abby as far as the Mito goes, but emotions, well those were written all over each entry. Those I could relate to... I finally knew I was not alone.

All with very different approaches to handling this disease. All with different cultures, different values, religions. Yet, we all were reaching out to not be alone.

Writing the blogs to share our stories, our children's stories.

Ashley
Jack
Will
Matt
Jacob
Reagan
Lucy
Lady A
Grayson
Wyatt

And many many more.

Each post they make, filled with the pain, the joy, the knowledge and especially the day to day basics is a gift.

Not only does it help other Mito patients, but Mito patients in the future.

Blogs are what keep Abby and I moving forward. Trying new things. Accepting new changes in her body with grace. Accepting ourselves and creating a new life around this new journey.


Though the large organizations do so much for all of us, the families that blog truly gift us, they keep us all sane, and make sure no one has to walk alone.




Tuesday, September 17, 2013

Mitochondrial Disease Awareness Day 3 : Tell Me WHY?

Do you remember reading those books in the library called the "Tell Me Why?" books? They had general ones and then they started making a series more topic specific.. Those were some of my favorite books as a child, they held the answers to everything! Why is the sky blue? Why is the grass green? If I asked my parents it would have been a "because they are".. rather then take the time to explain. Today we can ask "google" all those burning questions. If there was a gauge that tracked google searching I would be horrified by the amount of time I spend searching.


One of my earliest memories was of watching the news in the evening and listening to the constant talk about how close science was to a cure for cancer.

That was a good 40 years ago.


Have we "cured" cancer? Not all types but, we know a lot more.

We know some cancers are caused by chemicals.

We know some cancers are caused by viruses.

We know some are genetic.



We still don't know why for many types of cancer.



We still cannot prevent many cancers.

We still cannot cure many cancers.


I see a lot of parallels between Mito and cancer. Like cancer, I suspect there are multiple influences in the causes of Mito. We have found some with genetic mutations, but there are still far more without mutations(disease causing,identified)who are sick. If not genes, could something else be causing Mito? What is causing the Mitochondria to be sick? What is causing these new mutations?


We need to know WHY.


Why suddenly this massive tidal wave of neurodegenerative diseases in children and adults?

From just a few to epidemic levels? Why?




Why,why, why?



You CANNOT cure something when you have no idea what caused it.


Think about this; your car quits working. You have no idea how to fix it because you do not know what is broken. You take it to the mechanic who has to figure out why it isn't working, WHY it is broken, then the mechanic can fix your car.

From a parent standpoint, I want a cure for Abby- more then anything I have ever "wanted" in my life. A very close second is to know WHY so many have Mitochondrial disease. If we know Why we can prevent it.


Do you really think an entire generation of children suddenly are so susceptible to faulty genes and sick mitochondria?

That suddenly adults who were healthy have self destructing mitochondria??

Out of the blue mankind is suddenly self destructing?

Nope.

There must be more to it, if not, mankind is pretty screwed right?


I am sure like a few types of cancer, some cases of mitochondrial disease are faulty genes- just bad luck,inherited, passed on from a bad mix from parents.

For the rest though? We have likely done it to ourselves.

As the field of Epigenetics expands and gains respect we are finding that something so simple as a famine that occurred 2 generations back leaves permanent fingerprints(mutations) on our DNA.

Humans are biologically built to withstand famines and yet still that type of trauma leaves dings of damage on our dna that we pass down through the generations.


Another thought, are there new viruses that are taking root and causing mitochondrial damage? Possible. They are finding that a few cancers are linked to certain viruses.. So, are the viruses new? How do we figure out if there are micro viruses,or unknown viruses causing mitochondrial damage?

We do know that certain medications can cause Mitochondria to dysfunction in certain individuals, Why only a few who take the meds and not all?


So don't you wonder what all the chemicals, radiation, vaccines, plastics, medications are doing to your DNA? Those are not things we evolved to handle. In a very short 150 years we have exposed our genes to toxins that our dna has never encountered before. Talk about leaving some fingerprints on our dna.

How many of us will be damaged to the point of no return because we don't want to face the fact that at least some of the damage to our genes we have done and are doing to ourselves?

Does that mean we all go natural and live in straw huts and hunt with spears? Of course not. What it means though is we need to get real and start thinking further then our own lifespan, what we do today, what we learn today could protect our dna from further dings.

If I cannot cure Abby, second best would be saving the generations that come after her. To do that we need focus on the CAUSE not the Cure. Prevention should be the focus.

We need to know WHY our Mitochondria are getting sick before we can cure it.

Though we are far from a Cure, we are getting closer to knowing WHY our Mitochondria are failing. Once we figure that out, we can work for a cure- until then?

We need to ask the question, Why?



Monday, September 16, 2013

Mitochondrial Disease Awareness Day 2: Snowflakes

Like snowflakes, no 2 patients are a like.


Where one child may have tubes,wheelchair,and other "visual" disabilities, the next may look very normal but be twice as sick.


Where one child might have acute illness that needs prompt medical treatment, that child might be back on the playground playing hard the day after getting out of the hospital. Yet, the next might be ill for months and take months to feel well enough to leave the house, but never life threatening.

Where one has the energy of a normal child except when sick, the next will struggle to lift their head at their healthiest.

Where one person with Mito has no seizures, the next may have constant and unrelenting seizures.

Where two patients have the same diagnosed type of Mito, one may have a great prognosis, the other a bad prognosis.

Where one patient can hold a job and have a career, the next patient may not.

Where one patient attends school the next may need to be home even if the home bound one looks "healthier".


Where one has some sort of Dr appt weekly, the next may need none.


Where one patient responds well to hydration, the next may have little benefit.


Where one does best avoiding chemicals and preservatives the next can eat McD's, packaged grocery store foods(cambells,tyson etc) and thrive on that stuff..


Where one needs a ton of sleep, the next does better with cat naps.


Where one suffers in daily pain, the next has no pain.

Where one patient has feeding issues, the next has none..

And so forth and so on.


Even when 2 patients have the same genetic mutation, they may present as very different diseases.

It is no wonder that some family Drs, and many Specialists want nothing to do with these patients or don't understand,because of the variables in disease presentation it makes caring for a Mito Patient very time consuming and complicated. Each patient may need very different treatment and interventions. Some will be mild, some severe. Some need a lot of care, some very little. To be honest more often then I would like to admit, I share the Drs. confusion. How can you diagnose,treat or cure a disease that looks and acts like every disease? That looks like nothing and everything?

Like snowflakes, no 2 are a like.






Sunday, September 15, 2013

Day 1 Mito Awareness, It Can Take YEARS for a Diagnosis

Mito Symptoms are so diverse that the Mito Specialists can miss the symptoms.



If you talk to the families of Mito Patients or the Mito Patients themselves, many will reports YEARS of symptoms ignored, missed or dismissed as depression or anxiety or other diseases. The only thing worse then being dismissed by a Dr. that isn't a Mito Specialist, is being dismissed by the one with the training to make the diagnosis. Getting a second opinion is VITAL either to confirm the Mito or to make sure there is No Mitochondrial disease. No one is perfect. The various disease Associations all recommend seeking a second(or third or fourth..) opinion with any disease, Mito is no different.



Listen to your gut. Keep looking for answers. Easier said then done. For a disease of energy, it takes a lot of energy to just find the right Dr. to recognize it.

There is a reason shows like "Medical Mysteries" exist, some diseases are just very difficult to diagnose.


Though our Mito Specialists work very hard to care for a population of patients that seems to be growing at epidemic speed, there are simply not enough of them to provide for all.


Keep Advocating.


Over Abby's first 16 years her list of diagnosis's included:

"Spoiled Baby" Apparently, her Ped thought letting her cry without comfort would encourage better development. Yes, babies do need time to explore, to stretch and roll.. but, when a baby cannot move and is hysterical probably not going to do any good to just let them lay there terrified and alone.. just saying.

"IFSH" Despite the Ped thinking her delays were from being held too much, the first couple Neurologists were grim, to them her symptoms were progressive neuro muscular NOT spoiled baby. I had to find a Neurologist to take Abby to because the Ped would not refer,remember the Ped thought Abby was delayed because I held her too much.

"Undefined Congenital Myopathy".. Between all that spoiling I ruined her with and PT,OT,Speech she got better,slowly but better. Muscle biopsy removed the IFSH and replaced with an undefined congenital myopathy.

"Allergies" Despite being a nice chunky baby, she had horrid food allergies. Again the Ped was wrong. Pediatrician felt she could not have food allergies because she was plump. Also, the same Ped felt food allergies are almost impossible before the age of 1- Of course she was wrong. I listened to my "gut" and took her to an Allergist who found serious allergies to soy,dairy,corn,tomato to list a few.

"Apathetic Youth." We use this term to include all the times we tried to get help for Abby but we were blamed for spoiling her, indulging her, not pushing her, that she was dramatic, depressed, unhappy, anxious, our "bad" parenting.. Well of course she was miserable she was sick, but it was easier to blame being a teen girl for everything including her scoliosis.. really, we were told she would not have scoliosis if we pushed her harder then she would not have weak muscles and thus no scoliosis. Really.

"Bad Parents"- Oops, did I mention this one already? Somehow more often then I care to remember we were blamed for her health issues. We lived in the wrong house, we made her sick by owning a cat, we made her sick by not forcing her to play in the heat more,we made her sick by letting her grade accelerate,I made her sick because my house was too clean, we made her sick by homeschooling when she was sick, we made her weak by not signing her up for gymnastics(Oh we so tried all those things, they dismissed our efforts as we did not try hard enough, there thoughts were, we needed to push her harder)


"Depressed" I cannot tell you how many Drs. either said or implied(sadly some still do) that all that is wrong with Abby is all in her head. Depression is what her problem is.. yep, somehow depression caused the allergies, the fainting, the kyphosis/scoliosis, the fatigue, the frequent illnesses, the kidney damage, the gut shutdown.. Even if they recognize the diagnostics they seem to think a pill for depression will make her not care about being sick, thus make her better. What type of logic is that?


This sounds insane right? But some family will see a Dr tomorrow and get a similar BS lecture. This was 16 years of bad Drs.and good Drs. Don't get me wrong, we did see some great Drs over the years and the great ones are great because they admit even they don't know everything. When you have less then textbook symptoms and a hard to diagnosis disease, sometimes the journey to a diagnosis makes you as sick as the disease itself. You need a Dr. who wants to help you find the right diagnosis and treatment even if they cannot do it themselves.

Keep fighting- no one will fight for you or your child the way that you can.


Friday, September 13, 2013

Rose Hips, One of the Best Sources for Vitamin C





Percent of Daily Value in 1 Cup of Rose Hips:

Protein 2 g 4%

Vitamin A 110%

Vitamin C 901%

Calcium 21%

Iron 7%

Vitamin B-6 5%

Magnesium 22%

ROSEHIPS (From Mail Online )

Rose hips
Orangey-red, oval berries, sometimes as much as an inch long. They're the fruit of the dog rose and found in hedgerows from August until November. Seeds should not be eaten because they can irritate the mouth and stomach.

Contain: One of the richest sources of vitamin C, but also A, D and E, iron, calcium, antioxidants and fatty acids. Rosehip syrup was given to children during World War II for its vitamin C content. One cup of 30 berries contains as much as 40 oranges.

What's new: Powdered rosehip is three times better at reducing the pain of osteoarthritis than paracetamol, according to research at the University of Copenhagen, though just why is unclear. There were also none of the sideeffects associated with conventional painkillers such as constipation, diarrhoea or drowsiness.

'There is now good evidence for rosehips for osteoarthritis from a series of studies,' says Professor Edzard Ernst, professor of complementary medicine at the Peninsula School of Medicine in Exeter and Plymouth.

At home: Make rosehip tea for a cold. Boil one tablespoon of fresh, ripe rosehips in two cups of water for ten to 15 minutes, and then strain, getting rid of any seeds. Traditionally sweetened with cinnamon. Rosehip can also be used to make jellies and syrup.

Tip: Remove hairs from rosehips before use because they can cause irritation - they were used in joke itching powders.






We have found that finding vitamin C safely in food for Abby can be a challenge leading a low histamine diet and with all the other restrictions. Considering she cannot have any vitamins or supplements safely, and we have learned that really, the healthiest and safest way to get your vitamins is through quality food, we had very limited choices.


I finally ordered some dried rose hips to see what we could do with them. I am of the opinion that just about anything can be made to taste delicious, I mean we have figured out how to not only make chickpea tofu, but how to use it and we love the stuff!


To our surprise, rose hips are DELICIOUS!!! Tart and tangy. If you like lemons, rhubarb, tamarind, cranberries- you are going to love rose hips.


I had planned to make jelly, or fruit leather I was expecting to have to blend these with a number of other ingredients to make them appealing, but after steeping them and adding a bit of sugar? Amazing juice. Like a cranberry/raspberry juice.. a touch of blueberry flavor.. a touch of rhubarb.. Just outstanding.


Of course I have looked trying to find out if rose hips are a "high" histamine or "low" histamine and really not finding anything to give me an idea either way.

We do know that vitamin C reduces histamine. There have been studies that indicate rose hips have a terrific anti- inflammatory benefit. Abby is actually NOT allergic or reactive to roses, so when weighing the risks? This sounds like a winner.

She has tried a bit and no obvious reaction, but we haven't tried a good size dose yet. It isn't going to be hard to convince her though!


1/2 gallon of water
1 lb of dried rose hips(I used Frontier brand.)
sugar to taste.

Steep the rose hips for an hour or two till they are soft and start falling apart when you stir.

Strain them( I lined a plastic strainer with a piece of muslin and let them drip for a couple hours.)

This is a very concentrated juice. You could dilute for drinking. Thought adding unflavored gelatin to this would make an amazing homemade jello packed with goodness. Part of this batch became a "syrup" I added more sugar and cooked it down till it started to thicken, it will be delicious on pancakes,on homemade coconut milk ice cream and in tea.

I have seen the syrup combined with elderberries,raw local honey and with nettles etc to drink during cold and flu season.


Thursday, September 12, 2013

Mitochondrial Disease Awareness Week September 15-21





Next week is the annual awareness week.


If you would tell just 1 person about Mito, you will have contributed more then you will ever know.


Everyday, Mito Patients are booking appointments with new Drs, who have either never heard of Mito, or have a very very limited understanding of Mito.


More then once, we have had Drs. question Abby's diagnosis. She is simply too healthy to have such a terrible diagnosis as a depletion. They seem so puzzled,I understand, because I have really doubted the the diagnosis myself. Whether primary or secondary, it was found, it is there, and it is causing problems. I am sure I am not alone in wanting to scratch the eye's out of the next Dr. or Nurse who suggests Abby needs to simply push herself harder and she would fine.. To me, that means the Drs, the ones who are supposed to know this stuff, are ignorant about this disease. Some don't wanna know, I get it they are busy. Some don't believe it. Some feel that the 2 hours they spent on it in medical school 20 years ago means they know more then I do.



How do we get Drs to understand the growing diversity in Mitochondrial Disease presentation?

I will always remember Abby seeing a student at the Nephrologists office in the Med Center in Houston. This was the one system that is known for their Mito Specialist by the way... He lectured us on that we are caring for Abby wrong. He said, if it was Mito she would really be sick, and disabled, so no way could it be Mito. We needed to push her. He told us he was sickly as a child and his family pushed him, and look at him, he was going to be a Dr. .. No joke. Mito patients face these type of Drs. weekly, monthly, yearly. They are told that somehow it is mind over matter- if they WANTED to be better, they could be. In the year 2011 that is what the Medical Students were still learning and how they are still allowed to treat patients.. I always hoped that particular student went into research and far far away from patients.. But, based on the horror stories I hear about Mito Patients being treated badly, he is out there somewhere telling patients that Mito is all in their head and to just get over it.


Each day they are finding how many diseases are impacted by our Mitochondria. Cancer,diabetes, heart disease, Parkinson's,and Mast to name a few.

So wouldn't those specialists in those fields want to know everything about the disease they specialize in? If understanding the mitochondria and the impact on their focus lead to gains by their patients?

So it takes time, I get it.

I don't have time. Abby doesn't have time. We are not going to wait around until your Associations decide it is time for you to learn about Mitochondrial Disease. Ya'll need to get your act together. Enough.

Today, another child, adult will be diagnosed with Mito. They will be turned over to their local Drs. for care. They will be shocked and dismayed when their local Drs, don't know what Mito is, question the diagnosis, and ignore the warnings and orders of Mitochondrial Disease Specialist- even worse then all that? If the patient tries to advocate for themselves they will be ignored, minimized and often told they are wrong. After all they are just the patient. Heck, even with Mitochondrial Specialists, Mito Patients struggle to advocate for themselves. Not all Mito Specialists are good at what they do.

Without spending a penny, without even donating any time you can bring awareness. Tell your family Dr about a story you read about Mito. Tell your dental hygienist while you wait for the Dentist to come in, tell your OB/Gyn while you are getting your annual Pap..Talking about Mitochondrial Disease and all of it's quirks,odd presentations and suffering, is the best way to bring Awareness.


We cannot find the CAUSE of Mito if no one knows what Mito is.. We cannot find cures for Mito if no one recognizes that Mito exists. We cannot PREVENT Mito if no one wants to learn.


"Talk is Cheap" Well, it is cheap both on energy and the pocketbook.


You don't have to spend money. You don't have to spend energy at a rally,walk or presentation. Most Mito patients are often short on cash and energy! It is a bit of a running joke in our house that the Mito Associations do a Walk to raise money and awareness, Abby is lucky some days to have the energy to brush her teeth, let alone get it together to show up, socialize and walk..Ironic right? We have found that as an alternative, Talk is Cheap.


My favorite method to spread awareness is to send an outrageous amount of emails out. I write to Drs. with Blogs, I write to patients with blogs, I write to Congressmen, Senators, Manufacturers, news stations, magazine editors if I notice an email on any website I stumble across I send an email.. I am CERTAIN I come across as a little whacky, and I don't care. I figure they see my email and likely hit delete before they read it, but I also figure that maybe 1 out of 100 of the emails that I send might actually be read by an intern, or a secretary before it is deleted-so I have won, one more person has heard about Mito. I am not waiting anymore until someone or some association or the power that be decides it is time to talk about Mito and address that it is rapidly becoming a common and not rare disease.

My awareness week will entail a lot of emails. What are you planning to do?













Wednesday, September 11, 2013

Smoker


On this journey of finding food for Abby,which lead to learning how to make food for Abby I have had to learn A LOT. From dehydrating chicken broth, to canning to even weird things(weird for us!)like chickpea nofu, I have certainly learned a lot.


As the months go by I have also cleaned up not just Abby's diet but everyone's diet in my home.


Derek loves preserved and cured meats. Bacon, corned beef, pastrami, sausage.. and if you ever read the label on most of those, you will find quickly that they are packed with all sorts of nasty chemicals we should NEVER feed our families.


So, next on the list was learning to make it.


Abby, cannot handle pork,beef, most ferments. Smoking is a huge question for us. If I use safe wood to smoke non-meat foods there is a chance she will tolerate it. She does pretty well with the smoked fake nofu pepperoni.. So I am thinking in moderation some smoked items may add some great flavor.. A smoked yellow pepper? Don't knock it, I found out they are delicious! They make amazing relishes and sauces and the flavor they pack can make the most boring salad into something special. We have tried homemade chicken sausage for Abby already, we think the hog casing caused a reaction.. she has gotten very sensitive to any pork these days.. If I can find some lamb casings I may try those with her before I rule out sausage completely. We tried some lamb a couple weeks ago, and though it was not a clear fail, it did not sit well either. On the other hand my effort to find sausage for her led us to realize we can make our own quite easily for the rest of us, and we all benefit once again from eating a cleaner real food diet.


But, in order to smoke food, you have to have a smoker.


I am beyond frugal, I have had to be with years of medical bills. At this point, even when I have a few extra dollars I hate to spend them, if I can do it cheaper even if it means more work, I usually do. Derek and I just love doing these type of projects together. We like to know how things work, and the best way to figure something out is to make it yourself.

Cold Smoker:

Free file cabinet

thrift store electric burner

High temp primer and paint

Assortment of steel hooks and bolts( we always seem to have an abundance of screws,hooks and bolts laying around from past projects)

First, pressure wash, prime and paint.

Second, remove top drawer. Careful pry the face off the drawer and hinge it back on to use as door. We ended up using a piece of wood to give the screws something to grab- just a scrap out of the garage from a previous project.

Then drill a hole in the back of the bottom drawer and through the back of the file cabinet, make it big enough to run the electric cord from the burner through the holes.

Lastly install your hooks- I added four somewhat centered. I have grill baskets I can hang, or you can hang the sausage directly, or tie what you want smoked with kitchen string and hang it directly from the hooks.

For drippy things I use throw away tin pans that I rest on the drawer runners left from removing the top drawer-

Done. Add a temp gauge if you want, but it was unnecessary, even in the Texas sun it never goes over 150-175.

We also added damper's to the back, admittedly the extra touches of stainless look "cool" but totally unnecessary since this is a cold smoker and has plenty of air circulation because of the way that the cabinet is built.

Smoke everything. Try fruit woods, pecan, mesquite, hickory.. it makes everything taste better! There are endless blogs and websites devoted to smoking and curing meats and I suggest reading a few. Especially with meat, there are concerns about food safety and most of the blogs provide some great food safety guidelines to live by.


Tuesday, September 10, 2013

Healing

Yesterday afternoon when we checked the rash it looks like it is finally breaking up .. more purple then red, and more diffuse, like it is breaking up.


She is still not herself yet. Though definitely much better. For as sick as she got, just 2 weeks to nearly bounce back really wasn't bad. Her kidneys are still aching but even they are finally settling down.


Of course the kicker is she has a dental appointment this morning, which is a promised crash, though a few times she hasn't crashed too badly so I am hoping today will be easy on her.


I don't know how she does it. Every time we feel like she has made progress she tumbles back. I find it incredibly frustrating, I can only imagine how impossible it must seem for her at times. Abby just has the ability to generate peace and patience, surely it will rub off on me eventually!


Last night as I was falling asleep in my head I visualized this process like trying to climb a sand cliff.


Where I grew up on Whidbey Island there were sandy cliffs along parts of the beaches we played on.. I cannot tell you how many times our parents warned us to steer clear, to NOT play on them, that they could erode and bury us quickly. Unfortunately for my parents we were adventurous children, if they told us not to do something it often triggered us to go out of our way to do it!


At the base of the cliff where the ocean would reach at high tide were piles of large rocks and boulders.. huge driftwood logs.. then a gentle slope of sand. Our beaches were covered in rocks with little sand so the soft, dry sand on the cliffs was a novelty. The first few steps to climb were easy! It was a gentle slope.. Right away though you experienced the sand sliding out from under your feet. As you got more confident, you pushed hard to climb higher.. the sand slipped under your feet like pouring water, and you nearly ran in place trying to climb vertically. Sometimes as the sand slipped it would dislodge a small sand slide.. this made your heart pound! All those warnings of being buried alive came back quickly! Rarely the sand movement would dislodge a rock that would jump and tumble down below you- that would scare me half to death! Often though, the sliding sand would expose a root or a rock that could be used as a foot hold or hand hold, and for a moment you would get to feel like you had a firm grasp and solid footing. You would pant for a minute and try to enjoy that you had made it half way..at the halfway point you should have turned around enough to look at the amazing view of the bay but as kids we wanted to make it to the top-not stop and enjoy a view. Halfway had no value to me as a 7 year old. So you would try to climb higher. Problem was that with our cliffs the tops reached out toward the ocean. The tree's hung on to the soil and when you looked up you had a ceiling of roots hanging down over you. I remember watching the older kids successfully scale those cliffs and defy gravity. To me they looked like amazing gymnasts in how just using their arms they could go from hanging from those roots to flipping and pulling themselves up to the top. They would look like super hero's to me standing at the top.. doing the universal victory dance of childhood.


Of course looking back, we were stupid children. If our parents had found us doing that, I know the punishment would have been severe and we would have deserved it..

What I remember most as one of the only girls and not a coordinated girl at that, was the feeling of defeat.. how every time I thought I had finally found the right hand hold I could not pull myself up any further, or the feeling of the foothold slipping away under my feet.At those times I was so envious and disappointed that I was just not as talented as the next kid. Over the years I did conquer the cliffs mostly. I never could flip up to the top, but I learned to make it better then halfway. I learned that the view was pretty awesome even from the halfway point. I learned how to stop myself from sliding, to avoid falling debris, at the halfway point I even learned to balance and stand without using my hands, I no longer needed to snuggle the cliff to my stomach in fear, I remember feeling quite accomplished, even if I could never reach the top.

Trying to get Abby healthier is a lot like climbing those cliffs. So far I have not succeeded. Or have I? Sometimes when we think we have made progress the "sand" slides out from under our feet. We have made it halfway though, high enough that we see the roots dangling so closely we might be able to grab them! So close.. Just like the little kid I used to be, I find I often forget to enjoy the halfway point, that halfway gives us an amazing view. That all the hard work it takes to scale that cliff has no less value if you only make it halfway.

If you have to climb sandy cliffs, halfway is a great place to be. I appreciate the magic of the very few nimble enough to flip and stand tall on the fragile cliff edge, I feel sadly for those too fearful of sand slides to even try to make it halfway.

Best, I have finally realized that climbing the cliff doesn't need to be about getting to the top, but success is about realizing that it is the hard work and lessons learned that give us a feeling of a job well done.


With the rash fading finally, the sand has stopped slipping away under our feet. Abby has found her foothold again and able to appreciate halfway. Despite the danger in trying to climb the "cliff" (trying IVIg) we haven't lost any ground, even if we have yet to gain any. If you have to climb cliffs, halfway can be a great place to be.



Friday, September 6, 2013

Mung Bean Dal ( Soy free, dairy free, gluten free, corn-free, nut and seed free.)


Hands down we consume large quantities of Mung Bean Sprouts, but I haven't done much with the mung beans themselves.


On one of my trips to the various Asian Markets in Houston I brought home a few bags of organic Mung Beans. I have been pleased to see an increase in available organic products being offered at the Asian Markets, and the best way to support a continued increase of organic products is to make sure to buy what they have on on the shelf.

Mung Beans are legumes. They are LOADED with great nutrition.

Protein-14 grams per cup

Potassium- 537 mg per cup

Also, calcium,B6, magnesium(24 percent of daily), vitamin C, iron.


Mung beans are popular and a staple in many Countries, sadly not a popular food here in the US, they should be though!


Abby does pretty well with the legumes with the exception of soy, and dark beans(dark red,black) . She does best when they have been soaked, rinsed and cooked until very soft.

You can find mung beans that have been hulled and split. Unfortunately when I went to buy some I kept finding that they had added yellow dye- we don't do chemical food dye's around here, they are just bad bad for us in general, and when you have sick Mitochondria? It adds insult to injury to use tainted fuels.


So, we could soak and rub these to remove the hulls, but instead we save these for the days when her GI system is in top working condition. I feel strongly that the advice, "Use it or lose it" applies to all our body systems. We encourage Abby's gut to digest as much as possible when not in a flare. Mung beans seem to provide just the right amount of "work out" for her gut.

The recipe below is a new favorite, partially because if we find a recipe to use Tamarind in we always love it, and partially for the heat. We do enjoy a spicy, and full of nutrition meal and this one will be a favorite this winter. These flavors blended so well you will have a hard time tasting the tamarind at all, it just heightens the flavors beautifully.

Mung Bean and Tamarind Dal

1 cup of whole mung beans
2 cups of water(we use cyrstal geyser for all Abby's cooking)
1 cup coconut milk(if you use canned arroy D seems to be safe for corn allergies)
a orange-sized piece of tamarind pulp(will make about 1/3 to 1/2 cup of smooth tamarind paste)
1 cup of hot water(for the tamarind)
green and red pepper( I used 1 of each diced you could use any pepper or mild chili)
1 finely diced or grated yellow onion(grating is a new favorite way of ours. Sometimes the picky ones in our family are fine with the flavor but not the texture, and I admit I am not the best at mincing finely.)
2 teaspoons of turmeric(or fresh root if you have access)
1 teaspoon of pink himalayan salt
fresh parsley(if you have access to fresh curry leaves or you can have cilantro both great options)

Toast the following in fry pan:

2 teaspoons of coconut oil(or other fat of choice) (Tropical Traditions)
1 teaspoon of brown or black mustard seeds
7-10 dried red chili's, broken into bits or left whole(I got a great deal on the whole dried chili's at the Indie/Paki store, 2-3 dollars for a bag that will last a year! )
1/2 teaspoon black cumin seed

Rinse the mung beans. Cover with water and soak overnight. Drain, transfer to a large pot and cover with coconut milk and the 2 cups of fresh water. Bring to a boil, reduce the heat to medium low, and simmer, stirring now and then until the beans are soft - About an hour. Set aside and do not drain.

Soak the tamarind in 1 cup of hot water for 20 minutes I stir it a bit and try to break it up well in the water. Strain in a fine metal strainer over another bowl. I use a spoon and stir vigorously, it helps the tamarind pulp separate into the catch bowl below it. throw away the pulp that is left in the strainer(usually bits of seed,pod and roughage that is not wanted)and put the strained tamarind paste aside to add later.

Heat 2 teaspoons of coconut oil in a heavy pan. When hot, add the mustard seeds, red chili and cumin seeds. When the mustard seeds turn grey and begin to pop, add the green and red peppers or chili peppers, the onion, tamarind paste, ground turmeric and salt. Simmer for 5 minutes or so. Add this mixture to the cooked mung beans, return the pot to the stove overlow heat and simmer for another 10-20 minutes to blend the flavors and if you want it thicker. If it is too thick, just add 1/4 cup water at a time to get to a thick gravy consistency.

Serve with or over some basmati rice(I used chicken bone broth instead of water to cook the rice). We like to add a bit of saffron to the rice while it cooks. We also opted to throw a few green cardamon pods into the rice as it cooked(remove before serving) the green cardamon adds a delicate flavor and fragrance to what is a rather heavy and rich dish.

The Mung Bean and Tamarind Dal freezes very well. It makes a great side for other Indian influenced dishes.

Picture below is a pic of the tamarind paste once it has been strained. Thick or thin but I find if you can get about this consistency it adds the right amount of flavor.


Wednesday, September 4, 2013

IVIg Saga Day 8 The RASH!

Yesterday we were pleased to see Abby clearly looking better. Abby's face is always a give away for how she is feeling. Granted the shiners are still trying to eat her whole face, and she has a lot of drooping but the eye's were much clearer. She was moving better and awake more. The smiles came naturally and not forced. It seemed like the worst was over.


Until I saw the RASH.

Yep, on day 7 around the injection sites she got a rash. Not when she was injected, not even the next day- took till day 7. Delayed? Who knows. A bruise in the center, a clear ring and then a crimson ring of pinprick rash spreading across in a circle around the injection. She also is in hive mode. Itchy- from her head to her toes she is itchy. Brushing her hair and the itches are soothed for a second but the act of brushing backfires and the relief is temporary and the itching gets worse.. Her whole body is itchy.. where her clothes touch no matter the fabric- Itchy! She actually flushed today, which I cannot remember happening.. Today, the rash is still there, about the same, but now the center is a hard knot?? I am not even trying to guess what that is about.

Kidneys ache, reduced urine.. and did I say ITCHY???


On one hand, it is a huge relief to see her feeling like one of the living again.. seeing her so run down and miserable for a week was causing us to really rethink our decision to move forward with the IVIg(long story, but turns out she was given the wrong dose). Plus, after seeing her get so sick and her body managed just fine to recover, well that felt like a victory, like "well, maybe she is tougher then we thought."


On the other hand, rashes have never been "mild" with Abby. She rashes when something is bad, really bad. It usually indicates her reactions have reached a new level of sensitivity- how she could get anymore sensitive is beyond me, but we have learned to expect the impossible when it comes to Abby.


So, despite clearly feeling better and pushing back toward pre IVIG Sub Q baseline, I am not ready to do our victory dance quite yet that she has bounced back.. I am suspicious and with good reason. Abby's body likes to keep us guessing.

Hoping this rash and itching is transient.. a "no big deal" and "means nothing." Or maybe it means something "good" for once? So I hope. I cannot remember one time yet that a rash meant nothing with Abby, but I can hope! We are ready to have a 1st around here. :-)

At this point though I am claiming victory on her gut. Our precautions of restricting her diet to only a very very safe diet after any stress, illness or trauma, is paying off. Preventative care works, at least with Abby's GI tract. Which means I can start whipping up some funky food this week.. in moderation of course, but it will feel more normal around here with me back in the kitchen doing what I enjoy most.


I am still holding my breath, but hoping the rash is a normal thing for once.. maybe a rash could be a good thing. At least she feels better and overall is headed in the right direction. No reason not to be optimistic.

Monday, September 2, 2013

Still not feeling well..and a DIY Air Cleaner

Well, almost a week since the IVIg, and still not feeling great. Some small improvements, but overall, still not back to baseline. Patience is not something I have much of, but I am sure trying to be patient as the reaction runs it's course. Hoping a couple more days and she will be back on track. On a positive, nothing is "broken" as in needing medical intervention, so this is good, right? These are the times when I am incredibly grateful that Abby is a "fader" and not one to have acute crashes that need a trip to the hospital.



Besides a quick update on Abby, I had to share a neat tip a friend on an allergy group shared with the group.


Make your own air cleaner- Yep, for under 20 bucks too!


Simply use a 20 inch box fan, turn it on and set the filter on the back where the air is drawn through. As long as it is on, the filter will stay vacuumed to the back so no need to tape or clip it on, unless you plan to turn it on and off.


Home Depot, Lowes, Walmart and grocery stores all carry good quality AC air filters.


We seem to never have enough air cleaners, I am always spending a small fortune buying another one, buying hepa filters, replacing.


Some claims online suggest this will work as well as a 200-300 dollar version, we will see. I can say, after it being on for 8 hours it clearly has collected some dust already, for 20 bucks? I am very pleased.


Search google for DIY Box fan air cleaner, or DIY air purifier.. Some have gone as far as to customize their set-ups to look far more attractive then a box fan with a filter stuck to the back! :-)


Here is hoping Abby bounces sooner then later.
 
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