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, September 27, 2014

Better in September


This month still hasn't been easy, but definitely seeing some signs that we are on the up and up finally.

Food is still a struggle. Very limited diet, and very limited absorption.. she is pretty much holding her weight minus a few but I am much more worried about the nutrition or lack of she is eating or her body absorbing. Seeing a few signs of rebound makes me much relieved.


The climb back up the hill is slow, so slow it is almost as frustrating as the very fast trip down the hill.


I think it is the waiting, the waiting each morning to see if I can see any even tiny bit of improvement in her face. The inability to do a thing to change the course. The improvements are so slow and so tiny it can take a week to confirm that she actually has bounced back a bit.


We have skipped a few months of dental care, and that seem's to have given her the extra wiggle room to get back on track.


Derek and I both caught the virus going around- goodness! Took me two weeks. I am totally blaming those dangerous live virus flu sprays they give to children. Walgreens and the Pediatric offices have been spraying that virus up little noses like mad, which means all the little ones are running around shedding(spreading) live virus everywhere they go for weeks. Sigh, flu shots and sprays should be banned- nasty and ineffective at prevention, though spreading they are doing a fine job. Based on the fever, green snot and major ear and head pain I suspect I had an ear infection/sinus infection. I managed without antibiotics. Though I admit there were a number of days I was sick enough and miserable enough I really thought about going in and shortening my misery, but knowing that Abby cannot have antibiotics and knowing that any time we do use antibiotics we are risking a big trade off on overall health and scary side effects(killing your Mitochondria is high on the list of danger) I am proud of myself that I "sucked it up'. I at least had motrin to get me through the worst of it where Abby gets zip,zero nothing to help her. I am so incredibly grateful that Abby did not catch this one! I have no idea how badly it would have wrecked her. She seems to catch so many colds but they always come and go quickly. For the most part she just doesn't catch these big bad ones. Of course I probably just cursed ourselves by writing that!


If the ragweed would just go away I am confident we would get Abby zipping back along a little more quickly. The temperatures sure have been more conductive to better health for her so soon enough the ragweed will be gone.

I am a bit worried with all the bladder bleeding that seems to not want to go away with her. It seems to flare when she is in a major flare(last couple months) so hopefully it will settle down and heal up now that she is feeling a touch better.

The weird hickey rashes that happen when anything touches her seem to be determined to continue. She will go a week or so and hardly get any and then boom! Suddenly she is covered with them. They are clearly caused by her clothes, pillows, etc where it is pressed against her sleeping or even sitting. They seem to heal up quick enough. She has bloodwork again next month so if it is anything concerning I would think that would catch it.

Toenails are nearly "normal" though we are kind of holding our breath, based on how upset her bladder is she might have had enough stress that we might see another stop and go on those toenails. Hope not.

Her feet look pretty normal. Too much walking or too little and they cramp up but I think she has found a good balance. The calluses are still in crazy spots but seemed to have slowed.

With Abby it seems her body is in a constant stage of transformation. So many odd little issues that come and then go, making room for another crop of oddball symptoms to crop up. I am never sure what to expect next, but holding my breath seems to be working because despite the slew of oddball things, nothing yet that we cannot handle at home.

Speaking of transformations, Derek's hair has undergone a transformation. It started with shedding, and we guessed midlife was finally striking and we have both been preparing for the "bald spot".. :-) I have always loved his great thick hair. To our great surprise, his hair was falling out to make room not for gray hair, but for "curly" hair. I mean truly curly hair. His hair has always been very straight so this has been quite the novelty. Why we are surprised is beyond me,after all we have Abby who's body has yet to quit surprising us.


I usually mourn the end of summer, but with Abby struggling most of it this year I cannot wait to see it go. Winter has promise this year and we are going to appreciate it immensely if winter means the improvement of Abby's health.


Hopefully this week we can add a food(something green!) back into Abby's diet. Fingers crossed!




Thursday, September 25, 2014

Maple Cakes(gluten free, soy free, corn free, dairy free, nut free)


Thankfully, Abby does well with Maple. Sadly, the good and clean stuff is just expensive! For a treat and because her list of safe ingredients is rather short right now Maple cupcakes were just perfect to brighten things up. These are moist, yet not too dense. Using coconut oil works really well in this particular recipe plus using coconut oil instead of other fats is a better nutritional choice. You could reduce the granulated sugar and maybe even just leave it out, the maple syrup makes these quite sweet. I think without the sugar then skip the frosting and maybe add some dried fruit these might make a great breakfast muffin. Just as they are though works well for a dessert.

We have been using C&H organic in everything at this point and it is working very well for Abby and no noted difference in the food. We have been trying to use psyllium husk powder rather then guar. Abby hasn't ever noticed an issue with guar gum but because so many seem to either distrust the gum's or have issues digesting I have continued to try other things. Psyllium Husk can be still difficult for some to digest but is seen as a "cleaner" food source. On a positive, it really does work as well as guar gum. I find with desserts usually a straight across substitution, but with breads I have been doubling when substituting psyllium for guar with success.

Ingredients
3/4 cup coconut oil, room temperature(Tropical Traditions)
2½ cups all purpose gluten free Flour
2 teaspoons baking powder(homemade)
1/2 teaspoon baking soda
1 teaspoon psyllium husk powder
1/2 teaspoon pink himalayan salt
3/4 cup pure maple syrup
1/2 cup granulated sugar(C&H organic sugar)
2 large eggs
1 teaspoon homemade vanilla extract
3/4 cup homemade plain coconut yogurt


Frosting Ingredients:

⅓ cup pure grade B maple syrup, plus more if needed
3 Tablespoons palm shortening(Tropical Traditions)
2 cups corn-free confectioners' sugar
1/4 teaspoon salt(if you like salted caramel add more salt, salted maple is delightful too!)


Preheat oven to 350


In a medium bowl, whisk together flour, baking powder, baking soda, and salt.
In second bowl, Beat coconut oil, maple syrup, and sugar with a mixer until fluffy. Add eggs and vanilla extract, mix well.

Add flour mix and coconut yogurt to coconut oil mix. Blend just until combined.

Fill cupcake papers 2/3 full.
Bake until a cake tester comes out clean about 16-18 minutes. Cool completely before frosting.


Frosting:
Combine maple syrup and shortening in a bowl.
Sift in confectioners' sugar and mix/blend until combined.
Adjust consistency with more syrup, if needed.

Tuesday, September 23, 2014

FDA TO STUDY SAFETY OF ADULT-ONLY LAXATIVES PRESCRIBED TO CHILDREN(Miralax)

FOR IMMEDIATE RELEASE



Contact:
September 22, 2014
Carol Chittenden, Empire State Consumer Project cachitter@aol.com 585-831-7124


FDA TO STUDY SAFETY OF ADULT-ONLY LAXATIVES PRESCRIBED TO CHILDREN



Rochester, NY – Due to serious safety concerns raised in an FDA Citizen Petition filed by consumer group, Empire State Consumer Project (ESCP), last week, the US Food and Drug Administration (FDA) agreed to study the effects of polyethylene glycol 3350 (PEG 3350) laxative use in children. The group submitted the petition in 2012 on behalf of parents who say their children have been harmed by polyethylene glycol 3350 drug products. There is special concern about the safety of PEG 3350 laxatives like Miralax, which are not approved for use in children, and are not approved for more than seven days use. Many children are prescribed multiple daily adult doses by doctors off-label, often for months or years at a time. The ESCP petition calls for an investigation into the effects of PEG 3350 on children and a boxed warning on PEG 3350 products. The boxed warning was not granted, but the FDA has decided to update the labeling of prescription PEG 3350 bowel preparations with more stringent warnings and precautions for patients with certain health conditions.

The safety concerns reported in the FDA Citizen Petition are symptoms similar to those of ethylene glycol toxicity. The petition grant includes an agreement by FDA to study the potential for PEG 3350 to degrade into ethylene glycol (EG) and diethylene glycol (DEG), and to study the long term effects of PEG 3350 products on pediatric patients. Ethylene glycol and diethylene glycol are chemicals used to make antifreeze. Both are toxic to the central nervous system, liver, and kidneys when ingested. In recent history, DEG contaminated cough and acetaminophen syrups killed hundreds of adults and children. In 2007, the FDA issued a warning for consumers not to buy toothpaste from China, as some brands were made with DEG.

The FDA Adverse Event Reporting System (FAERS) shows over 7,000 adult and child adverse event reports that include at least one PEG 3350 product, including a number of deaths.
The number of reports rose from 2,257 in 2012, when the FDA Citizen petition was filed. In 2009, the FDA Drug Safety Oversight Board acknowledged neuropsychiatric, metabolic, gastrointestinal, and kidney events in children who took PEG 3350 laxatives, but felt that “no action was required” at that time:

“The Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body's acid-base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings.” “It is unknown if prolonged duration in solution would change the chemical properties of PEG-3350, and what the actual content of ethylene glycol or diethylene glycol or other low molecular weight PEG would be under such conditions.”

In addition to the ethylene glycol and diethylene glycol children may be exposed to through the degradation of PEG 3350, the FDA has tested 8 lots of polyethylene glycol 3350 and found ethylene glycol and diethylene glycol contaminants in the product itself:

“To better understand the level of polyethylene glycol impurities in PEG, the FDA Chemistry and Manufacturing group evaluated PEG 3350. This analysis of eight lots of PEG 3350 confirmed the presence of small amounts of ethylene glycol and diethylene glycol in all lots tested. Based upon the recommended daily adult dose of 17 mg daily dose PEG 3350, the maximum daily exposure of ethylene glycol would be 0.005 mg/kg/day for a 60 kg patient, or 0.015 mg/kg/day for a 20 kg pediatric patient (approx 5 years of age). Other low molecular weight PEGs were not included in this analysis. However, it is not known if any of these LMW species are absorbed and if so to what extent. Understanding the human absorption profile of LMW species is the first step needed in trying to understand the possible contribution of PEG 3350 use to the development of adverse events in children using this product chronically.”

Empire State Consumer Project has since petitioned the FDA to issue a Drug Safety Communication regarding the finding of ethylene glycol and diethylene glycol in all lots of PEG 3350 it tested, so that parents of study participants and all parents can be made aware of the potential for PEG 3350 to contain ethylene glycol and diethylene glycol. This petition for a Drug Safety Communication was denied. The EPA recommends that children not be exposed to more than 20 mg/L or 20 parts per million (ppm) of ethylene glycol in drinking water per one day or 6 mg/L or 6 ppm per day over 10 days. The adult doses of PEG 3350 tested were found to contain 0.3 mg of ethylene glycol of daily exposure for a 44 lb. child. This exposure is in addition to any EG and DEG exposure that may be found to occur from PEG 3350 degradation of the laxative products. The health effects of long term exposure of children to PEG 3350 are not known, although risks from short term exposure to EG and DEG are well documented in humans.

Empire State Consumer Project is a 501c3 registered Not-for-Profit Organization dedicated to reducing the use of chemicals toxic to human and environmental health. We accomplish this by educating consumers and industry, conducting product testing and reporting, and by advocating for regulation where needed to protect the public interest.

Resources

Empire State Consumer Project FDA Citizen Petition and FDA Response
http://www.regulations.gov/#!searchResults;rpp=25;po=0;s=FDA-2012-P-0566;fp=true;ns=true

NIH Grant to Study PEG 3350 in Pediatric Patients and Test of 8 Lots
http://grants.nih.gov/grants/guide/rfa-files/RFA-FD-14-088.html

Empire State Consumer Project, Inc.
http://www.empirestateconsumerproject.blogspot.com


Sunday, September 21, 2014

Pickle Kraut


(CAUTION Kraut and ferments are not recommended for those with Histamine issues or Mast disorders)

Pickle Kraut:

Some brilliant fermenter figured out this simple and glorious take on kraut. You simply add dill pickle seasonings to your kraut and you end up with kraut that tastes just like delicious dill pickles.

Any where you would add pickles you can now add probiotic and nutrition packed kraut instead. (cabbage has different values then cucumbers and it is easier to ferment kraut then pickles) On a sandwich, on a burger, in a salad.. Kraut is one of those flavors that isn't always the easiest to get picky children or picky spouses to enjoy, but when it tastes like pickles? No problem. :-) (Abby cannot eat it, anything fermented causes a reaction for her) .

To 1 head of cabbage and brine(I use 2 to 2.5 percent brine with pink himalayan salt for mine) I place the following in the bottom of the vessel(I prefer Fido's for kraut you still have to keep your kraut under the brine though! ):

2 teaspoons mustard seed
3 cloves of garlic
2 Tablespoons Dill weed.

I have used fresh dill packed into the bottom and that works well. This batch I had no fresh dill on hand(forgot to grab some) but was able to use dried dill weed.

I have found that if I cut a small square of cotton muslin and tie my herbs into a bundle with some cotton kitchen twine I can place the herb "bundle" in the bottom of the fermenting vessel and not have to worry about bits of herbs floating in my brine to the surface. When I am ready to eat my kraut, I simply pull the bundles out and toss. All the flavor and none of the mess.

In the picture you will see a dark lump in the bottom of the jar, that is the dill. My kraut is not glamorous to look at, but when it is done, it sure tastes good!

Thursday, September 18, 2014

Red Band Society- just say NO!

Drama, Glamour, Entertainment, warmth, friendship, God like Drs and Nurses...


If for half a second I thought a Soap Opera made about Chronic Illness and/or life threatening illness would make life easier for those who are sick, I would support it. This is NOT going to help.



You take a vulnerable population of patients and patient families and make them dependent on a hospital.


Sounds like a crisis for Hospitals and a crisis for Patients and Drs in the brewing. The bar will be set impossibly high. As it is, terminal is terminal in most cases and for patients forced to live in the hospital they are forced to face overwhelming loss and grief. The type of fantasy life being sold in this show is going to hurt the very population they have targeted. To set such a fantasy in the mind of an ill teenager, is disturbing.


1)If you are ill enough to live in a hospital odds are you don't have a whole lot of energy to wear full makeup and trendy clothes and jewelry- well unless you are wealthy enough to pay nurses who are willing to keep you glammed up, or family that is focused on your looks.


2) Family. The family should always be the focus of patient care. Not the Drs, Not the Hospital and not the Nurses. Patients first, then Families.


3) Hospitals are bad places. Not places that folks should idolize they can find life long friends, social satisfaction, or appropriate emotional and social development as teens.


4)The vast majority of Hospitals simply aren't going to or are unwilling to deliver such "special" care to their patients. The show setting is little more then a major fantasy and is only going to make patients very disappointed by what they are offered. Heck, most hospitals cannot even manage to provide allergy free food for their patients, let alone provide a fantasy world where dying teenagers can bond, be glamorous, and provide important moral lessons to viewers.


5) Hospitals are a place of LAST resort for humans. Germs, separation from family and friends, extremely expensive, if you don't want to run from a hospital the second you feel well enough to put on lipstick, something is wrong with you. How Drs. and Nurses manage to show up at a Hospital daily and not lose their minds is beyond me. Sorrow, illness, dredges of society, death, grief, loss, germs, depressing... has to weigh against the very few they can heal or simply "improve their quality of life".. No wonder Drs. get paid the big bucks, they work in hell.

6) Pressure on patients. After America see's how these "fantasy" chronically ill teen patients behave, new and likely unfair expectations will mould new stereo types that our Teen's will be forced to mimic- that is the last thing a healthy teen needs, let alone one struggling to live.

7) If Hospitals, Drs. and Nurses were getting complaints about care before? Standby- after America see's this show they are going to want and feel entitled to a whole different level of care.


Worst thing about this show? It will be a hit.


Tuesday, September 16, 2014

Mitochondrial Disease Awareness 2014

Each year that has gone by I have noticed that the population of Mito Patients as well as the information has changed.



This year brings a lot of mito awareness to cancer, heart disease, Huntington's,Autism ,EDS, Mast,and even Gulf War Syndrome.


Unhealthy Mitochondria are tied into a growing list of diseases and disorders.

For quite a few years, it was just the small children who's parents wrote blogs, just the sickest of the Mito population. Now lots of adults are blogging about how "Mito" impacts their lives.


Today, there are far fewer Mito blogs for children(because of the higher risk of CPS "not" understanding Mito, families are encouraged to remove their web presence.)but facebook has become the community. Hundreds of patient parents have "pages" on facebook now. I don't think I could possibly list them all. I am sure over the years that will change too.


Today you will find a lot more adult patients. A harder group in general to diagnosis but also a more hopeful group in general. The prognosis is less likely(though some will be terminal) to be life threatening.


This year brings a little more understanding to the Mito community. Everyone is starting to realize that their "mito" is likely very different then the next. Some go to College full time, some work, some only have to worry when they catch a virus or need other medical care. Some are very severe and need around the clock care. Some like Abby react to what seems like everything.

It is clear there is no "right way". Some children benefit from tubes, some don't. Some families don't mind a tube some do. Some go to public school and some don't. What works for one family doesn't for the next. I think most are realizing now that there is no one size fits all. What works for Abby could be dangerous for the next, and what works for someone else could kill Abby.

One thing that is absolutely clear, this is a disease or disorder that hits far and wide. No matter your income, heritage, values, diet, culture- you need healthy mitochondria.

ALL patients have done a good job spreading awareness- no patient should be made to feel they aren't doing enough, just dealing with the day to day is plenty. In past years there has been a lot peer pressure to donate money or time, and considering it is a disease of energy a lot of folks just cannot. This year is a little better. There is definitely less pressure and stress being distributed on the shoulders of patients- exactly how "support" should be.

Drs on the other hand, aren't all quick learners. If it isn't in their Medical Reference guide, or they weren't taught in medical school, you are still going to run into resistance at least for a few more years.

On one hand, that is good! American medicine has moved along as well as it has because the focus sticks to science, to facts. That type of training is what makes it so clear to me that for Abby and many others there are no absolutes, they haven't found any yet.

On the other hand, they can look at a patient in front of them that is clearly suffering and when the labs are normal they are still telling patients "you are fine.". Hardly.

Lucky for Abby we have found some great Drs. Some patients though won't ever get to see the right Drs. and that saddens me.


Drs are in awkward place right now. They are no long "authoritative". They give advice. Many are glad to work with their patients in a partnership others resent it.

We have seen story after story of Drs. taking control of a child's (a few adults too)life through their hospitals and the courts this past couple years. They feel they have the "right" to force a family to take their "advice". For the most part at the end of the day? Those Drs. have caused more harm then good.


The hero of this year for Mito Awareness is Justina and her family. They spread awareness, in a very big way.. Drs. were FORCED to listen and learn about Mito. CPS and State leaders(federal level too) have been forced to learn about Mito. The cost Justina paid was the loss of her ability to walk. Probably her trust of the medical world has been turned upside down. Her family was tortured. She was tortured.

Many in the Mito community rallied around Justina including MitoAction. Though, there were plenty of patients or families of patients who felt it wasn't their place to "get involved", which shows we have a lot of work to do yet. I feel strongly, that had MitoAction not stood up and vetted her status as a Mito Patient, Justina would still be locked up and being experimented on. MitoAction is the only one who actually supported the patient. Who did not put their reputation or fiscal goals before the suffering of a human being. Patient support should be number one from a Non-Profit Patient organization, right? MitoAction did as they promised, they provided support.


As I type this, there are other families(hundreds over the years across many different diseases) that are being targeted by Drs who don't believe in Mito, or work for Hospitals that seem determined to put their needs as For profit organizations before the needs of the patient.. the fight has just begun.


A long hard year for everyone.

I know my journey as Abby's Mom continues to evolve. No sooner do I think I am helping her on the right path, I find we need to change gears. I continue to struggle with trying to define "mito" in my brain. Like many of the Drs. I find the facts lacking. Unlike the Drs it is clear to me that patients are suffering and some dying and ignoring that, avoiding it won't make it go away. At the same time, treating something we don't understand isn't the best idea either.

What I have learned this year? A lot of focus on cure's and treatment, yet none on prevention.

It has been shocking the number of articles I have collected that show many medications cause mitochondrial dysfunction. That many toxins cause Mitochondrial Dysfunction. Would love to see a list of those slipped in with every Medical School diploma. There are now tests that can be easily tested on new (or old) medications to test for impact on the mitochondria, not required by the FDA(course not). I believe some companies on their own are testing but it isn't enough.

The overwhelming majority of Mito patients have no known gene mutation. Even more interesting is that they are finding perfectly healthy folks with the same disease causing mutations.. which means to me, we don't know squat yet.

A few people diagnosed with Mito(and given a bad prognosis) are now doing great. So hold on to the hope.


Awareness took a huge leap this year, and it continues to be the patients that pay the hefty price for it. Justina,her family and the hundreds of others that are literally being robbed of good health because Mito is still such a mystery, they are paying the hefty price. Each time a Mito Patient see's a Dr. and they they are treated like they are nuts, they are paying the price. Each time a Mito patient gets the wrong treatment, they are paying the price. Each time a mito patient is unable to participate in what they long to do, they are paying the price.


I had hoped by this year we would know "why" or "what" with Abby. Still don't. Still pissed. Still a little crazy. Still fighting.


Still hopeful.


May 2015 be easier on ALL of the Mito Community.








Sunday, September 14, 2014

Make it "Mini"

Mini French Toast or Giant Peaches?

Fact of the matter is, sometimes when you are avoiding corn and lots of other allergens as well, you are just plain limited.

Abby does love a basic Irish Soda Bread which came in handy when she no longer tolerated yeast. So we tend to have irish soda bread on the counter on a regular basis.

Right now she has been very reactive(fall allergies) so a very very limited diet and so I am always looking for a way to liven up her plate.

Size. If you serve tiny doll size pieces of toast, or tiny tiny little sandwiches, or in this case itty bitty french toast? For some reason it seems like a very different food. I at least get that satisfaction of serving something "different" even if we are talking size and not recipe.

Hobby Lobby, Michaels, even Walmart and Target do a good job of keeping mini size pans on the shelves. (these I found at Michaels and I have an even smaller set as well) These tiny loaf pans were all of a couple bucks and from miniature loaves of bread to chicken meatloaf they have added well worth their cost in entertainment value to our meals.

So, if you hit a slump and feel limited or bored with what you can eat? Try making it a different size. Itty bitty just seems to taste different.


Wednesday, September 10, 2014

Drs HATE Mito like they HATE Pain. Mitochondrial Disease Awareness 2014

The big question is always- Why.



1) They cannot define it, label it, measure it.


2) They were not taught about it.


3) They have been taught Wrong.



If you go to a Dr. complaining about unrelenting fatigue and pain, or fatigue that comes and goes your Dr. will probably run the normal basic panels. If you are a female odds are they will check your thyroid(10,000 times) and if your basic bloodwork is normal give you a script for anti depressants because even though you don't feel depressed, you must be. If you have 10 pds to lose? That is to blame. If you have a husband and children? That is to blame.


If you go to the Dr as a teen girl complaining of fatigue and pain- you are just dramatic. Blood work looks pretty normal? IT is the parents fault for "indulging" the teen girl drama. I remember Abby fainting at school and no one calling and telling her to get over it. Throwing massive protein and blood, but she needed to get over it. Abby even had medical documentation since birth of muscular issues - even then, the advice repeatedly was to "push" her, and ignore it. That robbed her body of years.


Good luck getting a referral. At best you may get referred to the Rheumy, who will likely run a blood panel and assure you that nothing is wrong and to get more exercise, maybe more of those anti depressants, because fatigue and pain if not measured in labs MUST be depression.



You might even get a referral to a Mito Specialist(after you spend a year finding a specialist that will see you, get on a massive wait list..) and some may not be as helpful as you had hoped.


OF course after a few years of being told you CANNOT feel that bad because your labs are fine, you do start to wonder if you should take those depression pills. Some of those anti depressants can cause Mito dysfunction, so you might end up even worse.


Until an effort is made to teach Drs. in Med School, until the Medical Associations prioritize Mito Education your Dr. won't understand Mito, and what a Dr. doesn't understand and cannot quantify with that basic CBC, odds are the Dr. doesn't believe.


Remember in the 80's when Chronic Fatigue was first defined ? Drs and patients laughed! IT was ludicrous to think you could have an undefined disorder with no specific lab tests and call it a disease. I remember very clearly a Dr. calling it a guise for lazy. Today we know it is a REAL disease that needs specialized care that the patients are hardly lazy.


You might have a Dr. that knows a little about Mito, but usually it is about the profoundly disabled spectrum. Which means if you have a mild presentation you will be told it is "impossible" you have that, or your Mito Disease Specialist was wrong. (been there with Abby) I have heard patients with profoundly disabled children told by many Drs. that it isn't Mito. A local Dr. may refuse to even accept the findings of an out of State Dr, they won't even bother to look the Mito Specialist up to see if they are a licensed Specialist in good standing. It can be a real war zone out there to get any Dr. to believe you let alone "want" to help you.


So, you ask yourself, "Is Mito real?" My Drs don't seem to think so.

There are plenty of open minded Drs however. Abby has a number of them that admit this is their first Mito patient. Or admit they had no idea an adult could have Mito. Or that they had no idea Mito could be milder and not terminal in childhood. A lot of Abby's Drs do a good job not judging, or working in partnership with her and I.


Until Drs. are taught and believe that Mito is real, there will be no awareness.

Our Society in general feels that anything to do with healthcare is best advocated for by Medical Specialists. Medical Professionals will not advocate for a disease they either don't recognize or don't believe is real, I don't blame them. We have been taught by so many Drs. that if doesn't show up on that basic blood panel, it cannot be real. Like pain, it can be very difficult. Pain can cause a patient to be completely disabled. Pain is individual, there are few tests that can "prove" a patient isn't lying about their pain or if the pain is acknowledged, odds are it is assumed the patient is exaggerating.(all patients are assumed to be lying about pain FYI) The testing used for Mito is complex. Much comes down to how it is read by any given Specialist. Even a genetic mutation is questioned because you can have a genetic mutation for a disease and not develop the disease.

Drs. depend on tests. On proof. On absolute Science. If it isn't in that lab report, it isn't real.


I appreciate the need for scientific proof, after all if I don't have cancer I don't want to be treated for cancer.

We know that patients with untreated pain suffer physical consequences.They can develop secondary health issues from the chronic pain. Same thing with Mito patients, ignoring their health complaints or covering them with anti depressants isn't going to make them go away. They will get sicker and sicker. Probably would have been easier to listen in the first place, right?


So as Mito Awareness week approaches, be gentle with other Mito Patients. Each patient advocates as best they can. Most struggle to get out of bed daily let alone organize a fundraiser. Most use every available spare dollar in their household budget to cover medical care,medications and safe food. Most struggle to feed themselves let alone show up for a lengthy walk. Most struggle to even find a Dr. that has heard of Mito let alone find the energy to sell Mito junk for fundraisers. Many are working hard to live their lives fully without spending any more of their precious energy on Mito.

We should however be looking to our Drs. to advocate for Mito. For Drs. to teach their peers. For Drs. to teach Mito in Medical Schools. For Drs. to accept that like pain, often Mito cannot be measured by that CBC blood panel. Sometimes even a science based field like medicine, needs to have a little faith and put the patient before the CBC.


Lastly, Thank your Mitochondrial Disease Specialist. If Drs. as a whole think patients are nuts for believing in Mito, just imagine what they think about the Specialists who work so hard to provide us a better quality of life. (Same goes for those Chronic Pain Drs- they go through HELL with Federal government daily to provide you with pain relief,at great personal expense.)



Sunday, September 7, 2014

Chicken and Rice in the Rice Pot


I love a quick meal, I love an all in one dish even more. Cooking in the rice pot makes this fast and easy. Feel free to add any veggies you like in addition to the peppers or swap out the peppers for peas or any other veggie you tolerate well. We are huge fans of any meal that contains turmeric and ginger. Both have terrific nutritional value and flavor.

The baby bok choy is the ONLY green leafy Abby tolerates right now. Needless to say, we work hard to work it into any meal we can. She reacts to the mature bok choy but for some reason the baby bok choy as long as it is cooked she tolerates.



Rice Pot Chicken and Rice:

2 cups rice(and the appropriate amount of water or chicken broth)
1 sauteed red pepper
1 Tablespoon finely grated fresh ginger
1 teaspoon turmeric(fresh is best but powdered works fine)
salt and pepper
1 finely sliced chicken breast


I saute the red pepper and ginger before adding it to the rice pot to make sure it is tender.


Add all the ingredients to your rice pot give it a stir and cook on the white rice function.


It is important to cut the chicken in thin slices to make sure it cooks completely during the white rice cycle.


The Baby Bok Choy-

A few handfuls of fresh baby bok choy(ends cut off and cleaned well, they tend to trap dirt like celery or leeks)
1-2 cloves of finely minced fresh garlic(I usually have some roasted in the fridge that I make and keep on hand to hurry it along)
coconut oil.


Saute the garlic in the coconut oil.

Add the baby bok choy- cook on the stove top for just a few minutes. I usually throw it in and put a lid on and shake the pot now and then to make sure all the bok choy is cooked. This only takes a few minutes. You know it is done when it wilts.


Fast, easy and full of goodness.

Friday, September 5, 2014

Mito Awareness

Thursday, September 4, 2014

Savory Chickpea Carrot Pancakes (gluten free, corn free, dairy free, soy free


These are easy and really tasty and you would never know it was chickpea flour. I saw a show that talked about "Chilla's" which when I searched had quite the variety of methods and ingredients. Usually they are seasoned with cumin,ginger or other stronger spices but we like these left very simple. When they are simple they go terrific with anything from bacon for breakfast to a side with stew for dinner. I have cut kimchi into these and they were great for a korean inspired side dish. Very flexible. Honestly with a little coconut yogurt(sour cream if you can have it) and green onion they are a very satisfying snack. In our house potato pancakes are the universal favorite food and these are a very close second.




3/4 cup chickpea flour ( safest to grind your own)
1/4 cup rice flour or all purpose gluten free flour (these will work with just chickpea flour,beans+rice though offer more value)
1/4 cup plain coconut yogurt (homemade)
Salt to taste (I always end up needing to salt once they are cooked so don't worry if you don't add enough)
1/2 to 1 cup water (looking for a pancake mix texture so start slow and add only what you need)



1 tablespoon grapeseed oil or coconut oil for frying(TJ's for grapeseed and Tropical Traditions for coconut)
2 eggs(many recipes for Chilla's call for no eggs the texture will be different but if you are egg free they would still work)
1/2 finely grated organic carrots(shredded beets, or squash of some sort would work well too)




DIRECTIONS:

1)Whisk the chickpea flour,rice flour, yogurt,and salt together. Whisk in water until the mixture is thick but pourable, like pancake batter.

2) Set the mixture aside for a few hours or overnight at room temperature until it ferments (the batter will rise and there will be bubbles on top). (I make these after I get the dinner dishes done so they will be ready for lunch the next day).

3) When ready to cook, add finely shredded carrot and the 2 eggs. Mix well.


4)Heat a seasoned skillet over medium heat and add the oil. Pour about 1/4 cup of the batter into the skillet at a time per pancake. Cook until the edges are golden; flip the chilla gently and cook until the other side is browned. (when cooking with chickpea flour make sure it is completely cooked, raw bean flour is not tasty!)


Serve with stew, chili, curry. Really just a very easy side and we have eaten them for breakfast even. We like them topped with coconut yogurt and some green onion. Great snack!

Wednesday, September 3, 2014

Mitochondrial Disease: The Man Made Disease

Everyday I run across yet another article that lists medications, pesticides, herbicides, fungicides as causing Mitochondrial Dysfunction.


Antibiotics

acetaminophen

Metals

Round up (and many other herbicides,pesticides, and fungicides)

Statins(cholesterol drugs)

psychotropic drugs

seizure drugs

vaccines


So we eat food full of pesticides,fungicides, herbicides which leave us vulnerable. Then we take a bunch of medicines that disturb our Mitochondria.


I know I ate a lot of chemicals(western diet) while pregnant. Before I was pregnant. I took antibiotics. I took acetaminophen while pregnant. Thankfully, I did not have the flu vaccine or any other meds. I did not color my hair, or do my nails. But I still used a lot of chemical cleaners in my home. I had vaccines before getting pregnant. I took other medicines before getting pregnant.


As a matter of fact, I am sure my Mom was exposed to chemicals in her food and maybe meds while she was pregnant with me. She had some vaccines before having me. My Dad had severe asthma as a kid and spent a lot of time in the hospital- I am sure he had all sorts of medicines.



Did my Mom's and Dad's gene's take a hit from her/his chemical and medicine exposures? Then I inherited those mutations and created some more of my own as did my husband. Eventually all those epigenetic changes add up and we get sick.

I am not sure if depending on genetics we each have a different "threshold" for damage or if those that are sick have just had more exposure. Either way, each day more and more and more are getting sick. Maybe your kids are still "healthy" but how many more dings to their mito,to their genes and to their microbiome can they tolerate? How many before their children will be sick from the mutations they pass on?


Recently I have been reading about our "microbiome" some researchers suspect our microbiome will be as important to our health and survival as our nDNA or our mtDNA.. We know the term "gut health" or "probiotics" or "leaky gut".. all of those are based on the microbiome. We are big old collections of more bacteria then we can count, and apparently we need them. As we wipe them out with medicines and chemicals we are getting sicker.

We did not have this many sick kids when I was growing up. We did not have this many sick adults when I was growing up. We are going to continue to see the numbers of chronic illnesses skyrocket until we address the "why" instead of focusing on treating the damage we are causing.


We cannot remove everything, believe me I have tried. We can however reduce our risks. We can reduce the risks to the next generation and the generation after that.


I am confident some cases are not preventable even if we lived on an Island with no chemicals, but I suspect for many of us our mitochondria would be functioning much better without all the known toxins that cause dysfunction.


I think Abby's depletion is "man made". I did it, my parents did it, our poor stewardship of our bodies damaged her genetic structure.

I don't blame myself, we did not know. We should have though. Research has been coming out warning again and again about the longterm damage from all our short term solutions. We know now though. I still don't understand that if our Government and other "trusted" sources are reporting this damage why we are not warned?


All I can do at this point is to continue to try to weed out the risks and do what I can as her Mom to protect her Mitochondria.


Not easy, but worth it.

First the food and what goes in the body, then what goes on the body, and then the home.



How many cases of Mitochondrial Disease could have been prevented?


Why aren't we warned about these risks? Especially once a family member has been diagnosed? Wouldn't the rest of the family be at higher risk? If all of these toxins contribute to mitochondrial dysfunction wouldn't it be extremely important to be proactive in removing them from the rest of the family before they too take hits that might add up to permanent damage? Wouldn't it be absolutely key to remove them from Mito Patients to stop further Mitochondrial Dysfunction?


Man Made Mitochondrial Disease, more common then we want to know.

 
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