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, August 31, 2013

Another quick one..and Ashley.

Each evening we note some improvement so very hopeful she can get back to baseline by the end of the week. Nothing new at this point which is reassuring. We thought her GI issues were settled, we were wrong, yesterday afternoon they were stirred up! Of course we took her to the Dr. so that always aggravates her system. This morning her gut is still fussy, but we have been through this before, with time and patience and careful food choices it should settle back down sooner then later.



There is a blog that I follow about a little girl named Ashley who lived in Longview TX. Ashley has been a fighter since she was born. I am not sure how I stumbled across their blog but I have followed for months now. Ashley faced serious health challenges daily, and her parents, and siblings were there every step of the way. Though Ashley touched my heart in many ways, it is her family that I hold in high esteem. They set the example on how to love, to care, to find balance, to hope, to comfort, to rejoice. They gave daily thanks to be so blessed to have Ashley in their lives. Without any doubt, it was clear from the first time I read their blog, their love for Ashley was a rare and pure thing, a type of love you don't see very often these days.

Ashley lost her battle this week. I cannot put into words how profound my feelings were, are about this sweet child. Through only knowing her through the blog her Mom kept posted, her Mom was able to write Ashley's story in such a way I felt a connection.



I cannot begin to fathom their loss.


Today, I had a recipe to post, but placing Ashley's name on this entry was what felt like the right thing to do. The world has lost a very special little person this week.


There have been many children and patients lost since I started following blogs about various patient journeys with various disease processes. They all touch me and I ache wanting to give comfort but having no idea what to say, or whether it is socially acceptable to offer sympathy via a blog comment..we are strangers who follow their blogs, their lives through a very small window called a blog. Even though it can feel as though we know them, do we really? I have opted not to post about the many who have touched my heart through their blogs because I am just a stranger looking in on their world.

Ashley is different, somehow more important, she left a bigger imprint on my heart.


She won't be forgotten.

Thursday, August 29, 2013

Quick update-

Some of the issues from the IVIg SubQ seem settled this morning. And others are worse. Her eyes are still itchy and crusty, which isn't part of her normal allergy response. Her ears are in terrible pain, and she said it feels exactly like when she got ear infections all the time when she was little. One is leaky, but I cannot tell if it is just hot so oozed wax, or burst. Either inflammation from an allergic reaction or turned into an infection from the reaction. She has an Appt tomorrow so we will know then.

One leg feels way better, the other is still tight and very tender- not hot or red, so we are not worrying yet.


The stomach is settling down nicely. We are being very cautious for now about what she eats.


We are still suspicious that the kidneys aren't quite done with their drama performance yet- by this weekend if they have settled I will feel better.


She is so so tired and hurts but definitely improved.


Yesterday I was so burdened with guilt. As Mom's we do everything to protect our children and that hasn't changed from the time she was born till now at 18. I "know" this was the right choice, and I know that just because she reacted so badly, it doesn't mean it won't work.. but that knee jerk reaction of blaming myself for taking the risk in the first place caught me off guard.


On a positive what we got out of this experiment? That patients with Mast disease are far more likely to have reactions like Abby then those patients with Mito.


Perhaps the proof we needed that much of what has slowed Abby down so badly this last 4 years is more about Mast Cells then Mitochondria.


Something to smile about, for sure. Well maybe not smile, but a worthy gain out of the misery at least.

Wednesday, August 28, 2013

SubQ IVIg

First treatment yesterday.

We were hopeful. She noted kidney pain in the first hour and I saw some eyelid swelling, but besides the normal redness and rash she did well. However, we all expected a reaction though with Abby it is usually delayed reaction, and she did exactly as expected.


Not so good last night. Full flare/crash. Feeling terrible. Really terrible. There is clearly lumps of the treatment serum under her skin still so not feeling like today is going to be any easier as her body continues to absorb. Some of the symptoms like the flu like symptoms and headache are noted as common. The other symptoms? faintness, dizzy, severe sinus and ear pain, bone pain, pancreas pain, mal absorbing, nausea, spins, blue toenails, feeling serious brain fog,racing heart, hard to focus her eyes, wobbly legs and kidney pain- well not so much the normal.. So Reaction? Mast? Allergy? Mito? Or just Abby Disease ticked off?



Despite what looks like major trouble coming, we are still hoping that the risk we took giving Abby this therapy will pay off. If Abby doesn't experience a pay off from the treatment, I don't think we will be too successful in pushing to get her to suffer through this again.


We are still hoping that the gains were worth the risk and misery.


Bone broth, mashed potatoes or yuca on the menu for a couple days, and tons of ginger tea.


Maybe, it won't get worse, maybe she will benefit despite the misery. So hard to feel optimistic when she feels this horrid.


Some of the side effects are from the therapy, but the other miserable symptoms? Stress? corn contamination?( all of them have corn derived ingredients) or who knows..

Fingers crossed it gets no worse as it continues to absorb. Double fingers crossed it helps despite the major crash.


Tuesday, August 27, 2013

Mast plus Mito- Same Symptoms.

At this point we strongly suspect Mast Cell Activation with Abby. Diagnostics for Mast are as complex as for Mito, and it comes down to a process of elimination and what works to reduce symptoms. There are some laboratory findings(NOT TRYPTASE, that is outdated and not accurate)and via biopsy in various parts of the body there can be evidence as well.( When Abby is ready to deal with her IC and needs a bladder biopsy, they can test then, the bladder is a great place for an accurate biopsy).


What gets me is how SIMILAR many of the symptoms of Mast disease can be to Mito. Symptoms in common include:

Fatigue
GI involvement
constipation
malabsorption
gastroparesis
Kidney disease
flares/crashes
nutritional concerns
Bladder involvement
Seizures(not as common in Mast, but still a symptom)
Aches and pain.
Immunological issues
POTS
Dysautonomia



So, how the heck do you tease it apart? Very carefully.


It was a little easier for us. Two things have been constant in Abby's life, Myopathy/hypotonia and Allergies. A little more complex then that.. but still..

My Gut has said this could not all be related to the Mitochondrial Depletion she was sick, but not dying and after reading every blog I could google on others with onset from birth, they were far sicker then Abby. I am so glad I trusted my instincts.

There are treatments that are more effective in the treatment of Mast then compared to Mito. The quality of Abby's life might be improved considerably. No promises but far more hopeful then Mito. Like Mito, there is no cure, but there is more hope. Unfortunately, like Mito there are HUGE variables in Mast Cell disease, some are very very sick. Bedridden, so reactive they cannot leave the house without risking an anaphylactic reaction. Some have years of remission where they feel much better. Some have a more mild and steady process. Some are easily treated with meds, and others are not responsive to medications.

But, though I kept hoping we could erase the Mito from her record, we cannot. A depletion is a depletion is a depletion. Though I am closer to proving it a secondary then a primary, not there yet, but getting there. At the same time, I cannot explain the myopathy, poor fetal movement, hypotonia, etc. I kind of see Abby as just unique. Maybe a combo of different disorders.. but, to have one that can be treated potentially and allow her to feel better? Awesome.


After the lengthy and painful journey to find out what was wrong in the first place to find the Mito, we had really had it with Drs, Specialists, not sure how most Mito Patients aren't violently ill or dead just from the process! Those endless Dr. appointments took more from Abby's health then a bad bout of pneumonia, I swear those appointment caused more of a crash then anything else in her life. I am so grateful that there are practices like the Virtual Practice where you don't have to leave the house, it protects tired and sick Mitochondria and makes the appointment far more beneficial then damaging. I think ALL Drs. involved in Mito care should provide virtual care, easier for them and healthier for the patients, just saying! When we started Project Elimination I had found some support groups on Mast Cell disorders and I really thought WOW! These folks sound just like Abby! Yet, we hesitated to move forward to find out for sure if Mast was a part of Abby's complex health. I hesitated because all our hopes were tied up in the possibility it was Mast. We hesitated because Abby was exhausted and terribly sick from the insane amount of Drs. appointments it took to diagnosis the depletion. We hesitated because when a new dr see's a "Mito Depletion" on a patients record? They blame the depletion, instead of looking further. We ran into a lot of resistance with Drs- I think having a depletion on your medical record is like having leprosy- no one wants to touch you!

After a year of project elimination and finding it really resolved many of the symptoms we thought were dysautonomia, we were ready. When Abby's tooth enamel began to literally fall off, and I found out this happens to quite a few Mast patients? That really got me motivated.

Like Mito, trying to find a Dr. that has any training in Mast Cell disorders is nearly impossible, honestly, it is HARDER, there are fewer Mast Cell Specialists then Mito Specialists. Like Mito, there are many different types of Mast Cell disease.

We found an Allergist/Immunologist in Austin that other Mast Cell Patients use for their Dr. (Visit meandmymastcells.com for a listing of Mast Specialists in the Country.)

I gotta tell you, we were terrified, scared, hopeful that when Abby saw him, he would or would not see what we saw, what many in the Mast Cell Community saw in Abby. I am running out of stones to flip to find anything but Mito to blame.. if it wasn't Mast? That would force us to look deeper at that maybe it was just a Mito depletion, and we have fought so hard to not accept that diagnosis.

To our amazement,joy, and greatest hope, he SAW IT!!! He saw what has frustrated us. He listened. What we really felt was hopeful was that though he has a strong background in Mast Cell disorders, he is primarily an Allergist and Immunologist. We felt even if he did not see Mast he could help us navigate all of Abby's funky issues with food, that he could in a way help validate our Project Elimination.

We are still reeling from this part of her journey. We are so incredibly hopeful. Abby and I are trying so hard not to place too much hope on the shoulders of one Dr, but honestly, just that he had a clue, that he had seen what Abby was suffering from in other patients well that is enough. Even if he rules out Mast down the road, it doesn't matter, he agreed to help us flip stones, so we could finally rule out our suspicions that we were missing something.

Enough data has come back from labs and clinical assessment that it might be Mast, that there is some funky immunological findings, that we have hope.

Without the kind and supportive Mast community, without the kind and supportive EDS community(who often have mast and POTS involvement) we would not be here, full of hope, full of relief.

So, the oars are back in the water, and we are rowing for the shore with new energy and hope.

If your gut says you are missing something? You probably are. 18 years and we are still finding new data on Abby.

On one of my support groups there are many like Abby. Mast plus Mito. EDS plus Mito. Mito plus EDS plus Mast.(EoE,FPIES and other feeding issues complicated by Mast,or Mito or unknown) Allergies plus Mito, and more. These families are struggling like us and they like us support the move forward to not accept the "no cure" so just focus on quality of life crap- they are fighters! They want answers even if it makes life harder, if you have hope? You fight.

There is a geneticist in Canada who is possibly starting research on the population of patients with EDS plus Mast plus POTs, the Specialists are seeing what we are seeing as the families,caregivers and patients. There is hope- keep rowing!

Monday, August 26, 2013

Hurry Up and WAIT!

Within the diseases that affect our Mitochondria, one thing all patients have in common is; HURRY UP AND WAIT.


Diagnosis? Hurry up and Wait

Treatment? Hurry up and Wait

Prognosis? Hurry up and Wait.


From Parkinson's to Leigh's- the variables in diagnosis, treatment, onset, speed of degeneration, are incredibly diverse. As we discover new things about our Mitochondria the variables get more extensive instead of less so.


It can take years of carefully monitoring a patients clinical and laboratory findings to at least create a "suspected" picture of prognosis. We guess, we generalize, we try to find a path that will give some sense of what to expect, but again and again we find we must Hurry up and Wait.


Over the last couple years as I follow patient blogs I find the Hurry Up and Wait part to be Universal, and one of the most stressful components. Often when two patients could not be more different in how their disease presents, Hurry Up and Wait is the one thing guaranteed to be in common.

A patient who has a mild onset either as a child or an adult can go years with milder symptoms and suddenly crash and develop a very grim prognosis. A patient who is terribly sick and with a very bad prognosis can repeatedly pull out of it to the surprise of both the family and Drs.


The NOT KNOWING is what disturbs us as humans. We want to know what to expect. Not just our health but in our everyday lives.


Each day I wait for Abby to wake up, I don't know if she will have a good day, a bad day, an okay day or the dreaded major crash. Each day I wonder how many more bad days can she handle before the cumulative effects add up and potentially put her life in jeopardy. Each day I wonder if my efforts to remove neurotoxins,triggers,reactions is enough, our climate control, our environment.. will all of those efforts add up to cumulative gains? Based on her 18 years of lab and clinical evidence we can guess she will live a long long time, but it is just a guess, anything could happen that might trigger some mysterious response, we have seen it happen too many times in other patients with diseases that disrupt the mitochondria. Each day I wonder how many good days will it take to give her stability to push forward with less risk of a major crash. So far, she is a fader, she gets a tiny bit more frail and so slowly it is often hard for me to decide whether she is worse or stable or better. She is also a bouncer, she can have so many small symptoms that indicate a major issue,and her body does as it should and recovers, we can only Hurry up and Wait - no way I can determine the outcomes today- this gives us great hope, and great Stress.

I don't know. No one knows. Maybe she will have another period of relatively good health, as she did through her elementary age years, and maybe she won't. We hurry up and Wait.

Maybe we will find she has some disease that has a treatment,or the biopsy was wrong, or science finds a way to heal her, we don't know we must Hurry Up and Wait.

Is it a food? A toxin? GMO's? A medication? Vaccines? Could any of those things be the cause of the growing population of patients with sick Mitochondria? No idea, we have to Hurry Up and Wait.


As parents and caregivers our energy revolves around Hurry up and Wait. Whether our child or loved one is frightfully sick or mild. So many times I have read families preparing again and again to lose their child and miraculously the disease abates or the bodies survival instincts kick in and life continues. So grateful and joyful, but knowing we must Hurry up and Wait to know if they will be able to pull through the next crash.


Antibiotics, supplemental formulas, CPAP,supplemental oxygen,tubes,lines, vitamins, supplements, with many patients these often don't have clear benefits, we must Hurry Up and Wait to see if they will help..or hurt. Maybe a week? A month? A year? Yep, Hurry up and Wait to see if it will help or hinder.


Even getting your child into a Specialist is all about Hurry up and Wait. On most of the support groups there are frequent discussions about how to even get your child seen by the "right" Specialist. Many are often unable to accept new patients. Many have waiting lists... it can take months and even up to a year to get into the Specialist that is most experienced in your child's particular disease patterns. Hurry up and Wait.

Then when you finally get in? The tests, the genetics, Hurry Up and Wait.

Support groups online are incredibly helpful. The other families are able to answer some questions and eliminate the Hurry Up and Wait at least on a few topics. Even then though, if I have a question today, I may have to Hurry Up and Wait till next week or next month before the right parent or patient stumbles across my question and can answer it.


Hyper vigilance is beyond exhausting and stressful. For every decision that I make daily for Abby I must be hyper aware of the impact. Maybe if I wash her hair today, it will take too much and my actions will cause a bad day. Maybe if I scrub her room today it will help her have a good day, or maybe it will stir up dust and cause just enough of an allergic reaction that starts a chain reaction and throws her into a crash- I have to make a million decisions and try hard to foresee all of the potential negatives and positives. I can guess based on her track record what may or may not be a good idea, but it comes down to Hurry Up and Wait to find out if my decisions were good or bad.

Diseases that cause Mitochondrial dysfunction are Hurry up and Wait diseases.

If there was some part of Abby that I could predict, prepare for or know what is likely to come, it would reduce the need for hyper vigilance and the stress. I would no longer feel like when I give her 2 slices of gf bread instead 1 and 1/2 I am potentially causing a tidal wave of repercussions..

Hurry Up and Wait = the common denominator.

Though we must ALL Hurry Up and Wait, we have a choice. We can Hurry Up and Wait for good days, cures, treatments,prevention or we can Hurry Up and Wait for the bad days, the loss, the grief.

We are opting to continue to Hurry Up and Wait for a cure, a treatment, healing, prevention, and answers.

Sunday, August 25, 2013

Fake "Corn" Casserole, Corn- Free of Course! (dairy-free, soy-free, gluten-free, nut and seed free)


If you live in the South, and probably the midwest, you have experienced corn casserole. Until we moved to Florida years and years ago I had never heard of it. Over the years I have sampled some "good" and some "bad" versions. Either way I tend to enjoy them, they are forever a part of every potluck and bbq. We opted to make a "mexican" and corn free version. Well cooked chickpea's instead of corn worked great! I often use coarsely ground millet to replace corn meal and to our surprise we prefer the flavor. the millet is more delicate in texture and flavor plus has better value then corn anyway. We don't miss cornmeal at all! The flavor on this reminds us of a deconstructed tamale- we were very pleased. I topped it with some coconut sour cream and a bit of parsley. Cilantro would be nice and if Abby and Sara were not allergic, I would have used it. I was out of green pepper and fresh jalapeno's but if I have some next time I make this I will throw some of those in too!

Ingredients:
3 whole Eggs
2 cups coconut yogurt(homemade)
2 Tablespoons grapeseed Oil
2 cups soaked and well cooked chickpeas
1 diced red pepper
1 small onion, finely diced.
1/2 cup water or alternative milk
⅔ cup Gluten free All-purpose Flour
½ cup coarsly ground millet (coffee grinder or single serve on the Ninja)
1 Tablespoons Sugar(domino's)
1 Tablespoon Baking Powder(Hain's or Homemade)
1 1/2 teaspoons Salt(pink himalayan) (we liked it best with more salt)
1 teaspoon cayenne pepper(simply Organic) (feel free to add more if you like more heat)
1 teaspoon cumin
1 teaspoon turmeric(The turmeric and paprika give this the great yellow color)
1 teaspoon paprika(smoked tastes great if you have one you tolerate)
1/2 teaspoon garlic powder


Preparation Instructions
1. Mix the wet ingredients first and then mix in the dry ingredients(don't over mix, just till combined)
2. Pour into a greased baking dish.
3. Bake at 350 for 45-55 minutes, or until golden brown and set in the middle (give it a shake – it shouldn’t jiggle too much in the middle) Serve hot.

Friday, August 23, 2013

Chicken Parmesan(Dairy -free, tomato-free, soy-free, corn-free, gluten-free, nut and seed free,)


It can be done, and it actually turns out very well with our alternative approaches. So well in fact, that we all look forward to this dish, and all wish I had doubled the recipe so we could have leftovers. At this point, this is what I consider an "easy and fast" meal. I have tons of containers of my roasted red pepper sauce in the freezer. I have vacuum sealed butchered chicken breasts, and I always have nofu(chickpea tofu) and coconut yogurt in my fridge. The fake cheese I make by combining the nofu and yogurt I generally have on hand as well. For me, this is just a matter of assembly.



4 Chicken breasts

1 cup homemade gf shake and bake(3/4 cup gf flour 1/4 fine gf bread crumbs,salt,pepper, basil,oregano,)

1 egg well beaten with a teaspoon of water.(this could be subbed easily for egg allergy with just water,or safe milk)

Grapeseed oil in a Mister(love these, you put whatever oil you use and it is like a home made No-stick spray)

1 1/2 cups of my roasted red pepper Italian red sauce(just roasted red pepper,onion,garlic, seasoning cooked and pureed,I freeze a ton of it.)

1 cup Nofu/yogurt cheese(combine 2 parts coconut yogurt to 1 part nofu in blender. When smooth pour into yogurt cheese basket lined with muslin. Allow to drip for a few hours at room temp. Place in fridge overnight. In morning if it is still too soft, place on counter and allow to drip for a few more hours and place back in fridge. The next morning should have a firm almost, crumbly cheese.

1 teaspoon Italian seasoning(oregano, basil, parsley,fennel if you like,marjoram as well as option)

PreHeat to 375

Directions:

1) Pound out the chicken breasts

2) pour the homemade shake and bake into a large gallon ziplock. Dip the breasts into the beaten egg and then place in the ziplock with the shake n bake blend. Shake till breasts are covered.

3) Place chicken breasts into a well greased pan(9 x13 cake pan works well). Spritz the top of the chicken breasts with the grapeseed oil- this allows the flour/bread crumb to turn golden and crisp while being oven baked.

4) Bake for 30 minutes at 375

5) while baking I season the nofu/yogurt cheese. I mix the 1 teaspoon of italian spice into it. Mixing helps warm it up so it is more smooth instead of crumbly. If you over drained it and it is too crumbly, add a few drops of water or safe milk till it is smooth.

6) After 30 minutes remove chicken breasts from oven, pour the roasted red pepper italian sauce around and over the breasts. Spoon the nofu/yogurt cheese across the top of each breast. Place back in the oven for 10-12 minutes, or till sauce and cheese are well heated.

7) While waiting make noodles of choice.

8) Place each cooked breast and some sauce on a bed of noodles. Done.

Thursday, August 22, 2013

Spicy Pickled Eggs-




A few weeks ago we were picking food to make for an Asian inspired dinner. We decided we had to find just one food that was going to be almost too weird to eat.

If you have ever been in an Asian grocery you will have seen the fermented eggs. Duck, quail, chicken- and preserved in all sorts of ways, usually so different then anything American they might even make you gag a little if you think about it too long.

In every bar in America there is always that mystery large jar of floating eggs in brine.. Sometimes pink or straight, but rarely does anyone ever eat one.. come to think of it, I don't remember ever seeing anyone eat pickled eggs.


The Asian markets are a great place to find quail eggs(1 to 2 dollars a dozen). They are cute, tiny, adorable and taste just like chicken eggs. The only downfall is I am sure they are not free range and what do you want to bet they are fed corn?

Once we decided pickled eggs would have a great gross out impact, I started looking at recipes. We could have just done a straight pickled but I noticed a few spicy versions- and living in the South, I always take the spicy option.


To our surprise when everyone was chuckling and daring each other(and refusing) to sample one, Abby volunteered. Which of course guilted me into trying one too! And wouldn't you know, they were absolutely delicious? We think they would be fab added to potato salad, or an egg salad sandwich.. even a twist on deviled eggs. We will probably stick to chicken eggs that I can find that are not fed corn, but will miss the cuteness factor of the quail eggs!

Though I will warn you, peeling hard boiled quail eggs? Prepare to be patient. Oh and cracking and making a tiny,tiny fried egg? make sure you have a few extra's to practice with.. you will need it!

Ingredients:

1 dozen quail eggs
1 cups bragg apple cider vinegar(one of the few that is corn-free.Any packaged product with "vinegar" is likely corn contaminated.)
1 teaspoon pink himalayan salt
1 teaspoons cayenne pepper(TIP: Simply Organic and Penzy's seem to work well for many with corn allergies.)
2 garlic cloves
4-5 peppercorns(Tip: We buy whole spices as often as possible. When herbs and spice are ground a higher risk for allergen contamination)
1 whole allspice
1 teaspoon yellow mustard seeds(TIP: both Indie/Paki markets and Asian Markets sell tons of whole spices at terrific prices)
1 whole clove
2 bay leaves
4-5 fresh thai hot peppers(I used them because they were colorful and tiny, but any spicy chili pepper is good)


Directions:

Place eggs in a saucepan and add enough water just to cover. Bring to a boil and cook for 3 minutes. Drain and place in cold water. When eggs are cool enough, peel them and place in jar or other container that can be sealed tightly.

Meanwhile, in a saucepan bring remaining ingredients to a boil and remove from heat and allow to steep for at least 2 hours. Pour over quail eggs in jar and screw on lid. Place in fridge. I find the eggs are best after 2 days, seems to have absorbed the flavors just right for us. Eat within 1 week.

Tuesday, August 20, 2013

Munchausen Syndrome by proxy and your Mito Specialist.

In general, I think I have said what I need to say about what seems to be a higher incidence of CPS reporting in the Mito populations-as far as I am concerned in my opinion, it exists.

Yesterday I spotted an article that had the names of most of the Mito Specialists in this Country listed on it. The title(and link) is;

Practice patterns of mitochondrial disease physicians in North America. Part 1: Diagnostic and clinical challenges



Great article. I will try to recap what I got out of the article.

As patients we are all very aware that depending on which Mito Specialist you use, you may get different treatment from clinical findings to laboratory interpretations. I strongly recommend folks pay for and read this one for themselves to come to their own conclusions. It certainly made me feel that my thoughts on variabilities between Specialists were fair assumptions on my part. There were all sorts of little gems of information that helped me understand why so many patients like Abby are not diagnosed or it takes years to diagnose. In a nutshell, if you have no irregular laboratory findings in urine/bloodwork, your care may stop there. Also, I was a bit surprised to see that not all biopsies are tested for depletions. According to the article/survey cited and linked above, "Less than half of clinicians measured muscle CoQ10 levels or assessed the muscle for mtDNA depletion" via biopsy. Also, without metabolic labs being abnormal a Mito Specialist is not as likely to order a muscle biopsy, which for patients like Abby(no laboratory abnormalities in urine/blood labs) can lead to being undiagnosed.

Originally what caught my eye on this article was that this was a survey of many of the Mito Specialists in the states,and I was hoping it would help me understand better the forever changing trends in Mito care. Also, it mentioned survey results on Secondary Mitochondrial dysfunction and since I am still not sure if Abby's depletion is secondary to her congenital myopathy and mast/allergy issues or if it is a primary I was hopeful this article might help me clarify my stance. Unfortunately, it did not. Though it did confirm that I am not alone in my doubts. Within the Mito Specialists who responded to these surveys, it seems there are variables on defining and treatment of secondary dysfunction. For the most part most Specialist surveyed agree there is Secondary Mito dysfunction, but after that their thoughts and opinions are less unified on secondary onsets and on how or whether to provide care.

Near the end of the article there is a paragraph about child abuse, more specifically it mentions Munchausen Syndrome. I was a little surprised to see it, and somewhat reassured at the same time. It is a huge concern for many parents with difficult to diagnose and treat children, and to know it is recognized as worthy to survey as part of care profiles in the Mito world indicated to me it is as hot of a topic amongst the Specialists as it is between the parents.

In essence, the paragraph covered how Mito Specialists that were surveyed handled suspected child abuse. They used a few different methods.
83 percent sought the assistance of their hospitals child advocacy committee.
80 percent contacted the referring provider for further details.
60 percent planned an inpatient admission for the patient and 60 percent consulted with social work for more evaluation.
Another option was a sit down with the patients family and other Drs. to discuss the issues.


There were many words used in the original text that left this part of the survey very unclassified and open for a wide array of interpretation.

The word "Selectively" was used. That could be very different from Specialist to Specialist. Maybe 1 Specialist thinks that if I said "Abby is so sick we have seen gobs and gobs of Drs. over the years, and despite symptom A,B,C and D happening all the time,no one is helping." that I might be "over reporting" where another Mito Specialist would simply understand that after 14 years year of Specialist appointments I am frustrated and sick and terrified of not getting answers, which would be considered common sense? Would this scenario even be an issue? I don't know because the article did not provide any definition for "selectively". For years after leaving the good care in NY that Abby received there,we would have appointments with her family Dr. or Pediatricians over the years. As her primary care providers they often expressed concern over various symptoms and would refer Abby to Neurology. We would go to Neurology, get the blow off and no answers. Eventually, when they made the referral, we quit taking Abby. I was sick of Neurologists and other Specialists often not just dismissing our concerns but being disdainful that we had "wasted their time.". So, to defend myself as a parent, after years and years of watching your child be sick, be not normal, of pediatricians or family Drs encouraging us to seek specialized help for our child not because of our concerns but because of theirs, you do get to the point where you start to wonder, what will I have to say or do to get this jerks attention? Is there some magic word? I am not dramatic by nature, but by the time Abby was 14 and going down the tube quickly, I wondered if I was going to have pitch a tent and carry signs outside their doors demanding they help(and so help me and them, I was so close to doing just that!!) I did not care any longer if I looked like an idiot or a crazy woman. Abby needed help and she was not getting it. I cried, I yelled, I demanded, I complained and I behaved very out of character(and I am honest enough to admit, badly at times) for me. Looking back I am certain many of the specialists probably shuddered and thought about calling in sick when they saw we were bringing Abby back in for another appointment. The ones who were able to use their extensive education and understand we were scared for our child despite my attitude, well they get 5 stars. After 14 years of suffering disdain and arrogance that I was just a "mom" and an idiot, I had all I was going to deal with.. period. Hear me roar. To be honest, we often wonder if Abby had been 4 or 5 years old when I threw such a hissy fit, if we would have been one of the families that got referred to social services?




What really got the hair on the back of my neck was the "60 percent planned an inpatient admission for the patient and 60 percent consulted with social work for more evaluation." Kind of sits wrong with me as far as the approach on that.. it could be done in a much less damaging way I think. I have heard of this happening here in Houston and in other parts of the Country. 60 percent is a majority. If I had an underage child these days trying to get care for my child, I would be very very cautious.
These survey results on this topic are really too incomplete to come to any conclusive thoughts on the topic,just enough for me to ramble about my personal speculations on the topic. What I got from it was that as parents we should be concerned, likely very concerned about how we present ourselves and our children to Specialists in the Mito World and honestly how we interact with Drs period. The trust is no longer there, it must be earned. For us, and for them.


I am so sick of the "them against us"..

Advocating for your child is a slippery slope- if your gut says something is off about a Dr? Run. Just my opinion. Once CPS is involved , it too often means your child will be removed from the home. Not just for a couple days, but potentially for MONTHS. Surely Mito Specialists and other medical specialists understand when they check a box and hand over a child's record to the CPS squad at their hospital, they are forever damaging the family. That the child will suffer even further. That the parents will likely lose everything they own to pay for legal fees- in essence even if proved that there was no abuse, irreparable harm has been done to the child and family. According to the most recent research I have been able to find googling, Muchausen's is rare, EXTREMELY rare. Rare enough that the seemingly higher numbers of reports in the Mito World seem off, way off to me at least.



I think the greatest fault is not the Dr. for worrying about their patient or the parents of the child for becoming neurotic caring for a sick kid- the issue is how our Court systems and family service systems are set up.

Research PROVES that a child removed from even a pretty dysfunction family(drug use, alcoholism, neglect) will do WORSE in foster care or a group home then if reunited with their family even dysfunctional family.(I was a foster child for a time so have first hand knowledge) Even if parents are failing to care for their child properly, odds are it is learned behavior, I would like to believe in general no matter the dysfunction in a home a parent has a deep attachment and love for their child. It is that bond that determines the child's future outcomes more so then the dysfunction. When removed from the family home, that child loses that bond. Without that bond their futures become even more stacked against them. Any hope they had are reduced even further. In essence they have been given more barriers to having a positive future then given any help to increase their odds of being healthy and successful. Foster children are at high risk to commit crimes. They are at higher risk for drop out from high school, drug abuse, teen pregnancy. Left in the dysfunctional home, yes they are still at higher risk, but lower risk then destroying the family bond. Separating a child from their parent even temporarily will cause unrepairable damage. To the family, to the siblings, to the child. CPS will always believe Drs. over parents- if a Dr. says they are concerned, CPS is more likely to remove the child from the home, then investigate. If I was a CPS Worker, I would trust a Dr. more then a parent myself, so I cannot blame them for any assumptions or judgements made, their job is to protect the child. Once removed, reuniting can and frequently takes months, it destroys the family bond, it destroys their finances. Even if the parents are proven innocent, the damage inflicted on the family unit is permanent. A family that was healthy before reporting ,has now become dysfunctional. Despite the often good intention to protect the child, if you are wrong when you report parents to your chain of command, you have caused permanent harm and damage to not just the patient but the entire family unit. Damage that doesn't heal that will make it much harder for the family to be successful and healthy. Probably not the outcome any of us want. Things need to change. Parents are not the enemy. Drs. are not the enemy, even CPS is not the enemy. The enemy is a system that too often does far more damage then good. It must be stopped.



What we have today is a system that despite all of our best intentions, is broken. A system causing more harm then good for a growing population.

I have been exceptionally grateful to both the UMDF and MitoAction for acknowledging this issue. I am grateful that the Mito Specialists have acknowledge the issue.

Now to find the bottle neck, and to fix it otherwise, we are all guilty of contributing to the failure of our current system. Guilty of inflicting more harm then good but with the best intentions.

“The price of greatness is responsibility.”
Sir Winston Churchill (1874-1965);

“It is not only for what we do that we are held responsible, but also for what we do not do.”
Jean Baptiste Poquelin Molière (1622-1673)

A man who has never gone to school may steal from a freight car; but if he has a university education, he may steal the whole railroad.
Theodore Roosevelt

We are shut up in schools and college recitation rooms for ten or fifteen years, and come out at last with a bellyful of words and do not know a thing.
Ralph Waldo Emerson (1803-82)

Monday, August 19, 2013

Millet, not just for Pet Birds


One of the foods I discovered through project elimination was Millet.

1) Abby is not allergic!

2) Gluten free

3) Surprisingly full of some key nutrition.

4) It actually tastes great! Compared to quinoa, chickpea and teff, a very mild flavor profile that blends well with everything. Though it doesn't have the protein value of quinoa, it has it's own unique nutritional values.


One of the first things we did was go gluten free. Which introduced us to many new grains/seeds. Millet was one of the first things I dragged home. I was not expecting to like it. Shockingly, we all really love it.

Millet has a lot of nutritional value, most remarkably Phosphorous. Not commonly allergic. Clear of oxalates and purines. Lutein and Zeaxanthin,Folate, magnesium,Choline, vitamin A, vitamin B3, iron..


Best yet, it is a mild flavor. It grinds easily. It cooks easily. From hot cereal(instead of rice,corn,wheat or oatmeal) to a nice addition to a gf flour, we add it in when we can.

Oh and it is reasonably priced too- added bonus.

For more information on Millet I suggest reading The Worlds Healthiest Foods site which is whfoods.org

Lastly, since we are corn free, I have found that millet when roughly ground and added to other flours very much reminds me of cornmeal. Slightly yellow color, that same texture. I will roughly grind millet to put on the bottom of a pizza crust, or added to chickpea chips(reminds us of fritos or corn chips).. bottom of an english muffin. It has really helped us give Abby's food another dimension of texture that we missed when we eliminated all corn from her diet.

The cream of millet reminds me of cream of wheat. Since it is soaked it is very tender. This batch had some figs and spice and a bit of maple syrup- definitely a favorite.


Cream of Millet Cereal:


1 cup roughly ground millet(in a coffee or spice grinder just a zap to break it down some. OR in the Ninja single serve- you want it just one step less then whole)

3 cups water

Dash of pink himalayan salt


OPTIONS: fruit,yogurt(coconut for us), spices

Sweetener- sugar, honey or maple syrup


I coarsely grind the millet. In a jar I combine the millet and 2 cups of water water. I allow to soak overnight(According to the book Wild Fermentation you can soak up to a week). In the morning, I pour it into my rice pot and add the additional cup of water and dash of salt.

I used to use the regular rice option, but recently upgraded to a pot that also has an oatmeal option that works perfectly. Allowing it to sit for a few minutes will thicken it.

We often throw figs or dried peaches into the hot millet cereal while it cooks. If I remember I throw the spices in before I cook it.

Sunday, August 18, 2013

The Homemade Reuben Sandwich(corn-free, dairy free, gluten free, soy free etc)


As we worked through project elimination, it hasn't been just Abby that has benefited from all the food data I have learned.

Though we do have some less then clean items for the rest of us time to time, we are trying very hard to improve all of our diets.


One of the joys this last few months has been fermenting foods. Unfortunately, beyond coconut yogurt, Abby's system is limited in how much fermented food it will tolerate(Mast?) I have had more time lately since it has become easier to keep up with all the prep for Abby's food and now I am fermenting everything it seems for the rest of us.. Sara says it looks like "Witches Brews" all over the kitchen, but I am terribly fascinated by the process of fermenting. Repressing bad bacteria, and promoting the good. Even sprouting is becoming part of my kitchen. From a seed or grain that is difficult to digest in order to get great nutrition value from even in healthy digestive tracts,transformed to a sprouted grain or seed that not only is easier to digest,but also has transformed and improved it's nutritional values.


The first thing I tried a few months ago was kraut. Love the stuff. I eat it cold, seasoned, purple or green... endless options.


One of the foods we avoid like the plague for all of us is preserved meats. Have you read the ingredients on a pack of cheap bacon? Or a hotdog? Or a sausage? Read the package of pepperoni, that will give anyone a heart attack just reading the chemical slurry you get eating that!

An all time favorite of mine has been a Reuben Sandwich. My old favorite was one from Katz Deli. I have no idea what they put in theirs, but since I avoid restaurants these days, I knew if I wanted corned beef I would have to make it myself.

Easy, really.


I had picked up a grass fed beef roast at the Calico Dairy in Conroe(great raw milk, cheese, kefir etc by the way!) I am not sure if it is cornfree enough for those with corn allergies, but since Abby cannot eat beef it wasn't a huge concern for the rest of us. When I read about brining my own corned beef, it calls for brisket for the meat, but I am all about using what is on hand, so a top roast is what I opted to use.

Turned out delicious. When I started to cook it, we just knew it would be delicious the house filled with the smell of corned beef.

My Reuben was made with gluten free "fake Rye" bread. I use a mix of buckwheat and other gf flours. I add some homemade pickle juice,ground caraway,mustard seed and dill for seasoning. We prefer our caraway seed ground vs whole seed. Of course I made the kraut(3 weeks this time of year for a good tang. I do a small batch in a large fido jar 1 head of cabbage per batch), the thousand Island dressing a combo of all our homemade condiments- roasted red pepper ketchup,homemade pickles,homemade horseradish sauce, homemade coconut yogurt,some other seasoning. No need for cheese on this Reuben, it was well worth the effort.

I have just enough leftover corned beef(small roast) to make some corned beef hash today.

Below is the brine I used. Usually corned beef has a pink color from adding saltpeter. However, not only did not have any, I would really rather not use it. Grey meat was fine with us and I got a great pop of color from the red kraut.

TIP: Homemade sauerkraut is another tool for fighting constipation issues,very effective treatment as well as cheap(less then 1.00 dollar a head of cabbage)and delicious!

Corned Beef:

1 quart water
1/2 cup pink himalayan salt(or kosher salt if not allergic)
1/2 cup brown sugar
1 teaspoon mustard seeds
1 teaspoon black peppercorns
4 whole cloves
4 whole allspice berries(I used ground was fine)
2 bay leaves, crumbled
1/2 teaspoon ground ginger(or a teaspoon fresh)
1 (2-3 pound) beef roast, trimmed
1 small onion, quartered
1 large carrot, coarsely chopped
1 stalk celery, coarsely chopped
OPTIONS(juniper berries I did not have them so skipped,though if I have these next time I will definitely add them. And most recommend saltpeter as well which I skipped)


Directions:
Place the water into a large pot along with salt, sugar, mustard seeds, peppercorns, cloves, allspice, bay leaves and ginger. Cook over high heat until the salt and sugar have dissolved. Remove from the heat and allow to cool to room temperature. Place the brine in the fridge till completely chilled. Once it has cooled, place the beef roast in a large zip top bag and add the brine(or seal tightly into bowl fully submerged).. place in the refrigerator for 7- 10 days(even in a ziplock, put in bowl,it will leak). Each day check and make sure beef is submerged and stir brine.

After 7-10 days(I have read some directions recommending as little as 3-4 days,but I am doubting it would allow for a good penetration of flavors), remove from the brine. Place the roast into a pot just large enough to hold the meat, add the onion, carrot and celery and cover with water. Bring to boil. Reduce the heat to low, cover and gently simmer for 1 1/2 to 2 hours or until the meat is tender. Once cooked,thinly slice across the grain for more tender bites.

Thursday, August 15, 2013

Egg Free and Starch Free Pudding(gelatin based)



Although Abby is still avoiding gelatin someone on my corn allergy group mentioned a pudding made with gelatin instead of egg and starch. 1) Gelatin is very very good for you, that is if you use unflavored and not chemical gelatin(NOT Jello!!!!). 2) So many people are allergic or reactive to eggs. Felt like I had to share this one.

I had some peach butter(brown in color) that needed using so threw it in.. it tastes amazing,extra peachy and spicy, but the color was just awful! :-) You may want to make the pudding and add the fruit puree to the top of the serving before eating, that would avoid the odd off putting color.

You could wait till you take it off the stove to add the honey to retain the raw values. But if you use sugar you should add at the beginning as the recipe says to make sure the sugar melts.


1 can Arroy D fullfat coconut milk(or equal homemade)

2 teaspoons gelatin (Great Lakes brand)

1/2 cup raw honey (or 1/3-1/2 cup granulated sugar)

dash of salt(pink himalayan)

Fruit puree of choice(I used 1/4 cup peach butter)


In saucepan place coconut milk, honey or sugar, salt and fruit puree. Sprinkle the gelatin across the top. Heat and stir on medium heat until all gelatin is melted in. (did not take long at all!)


Pour into a bowl and place in fridge for at least 2 hours.


This may be "jiggly" in texture instead of pudding like. Simply place pudding in blender(A whisk will work, but the blender was quicker for me) and quickly blend until smooth. If you find it too thick add a bit of coconut milk or water to thin to your liking, perfect.

Just Tired

Tired of thinking

Tired of worrying

Tired of researching

Tired of being scared

Tired of watching

Tired of analyzing

Tired of questions

Tired of the answers

Tired of seeing

Tired of knowing

Tired of repetition

Tired of stupid chemicals in food

Tired of GMO's

Tired of sickness

Tired of talking in circles

Tired of new discoveries that bring no answers

Tired of complexities

Tired of traffic

Tired of noise

Tired of googling

Tired of not knowing

Tired of the uncertainty

Tired of not trusting

Tired of swimming upstream

Tired of doing it different

Tired of the balancing act

Tired of fighting the status quo

Tired of knowing our way is best,but feeling the temptation to do it the easy way even if it isn't best for Abby.


Despite our generally upbeat attitude that we will unravel it all eventually, some days my brain is just tuckered out. What I would give to not think for even a few days! Abby woke up swollen badly with a nasty cold.. Clearly her kidneys are ticked off.. So, I know the drive and Dr. visit triggered it, but the question that is always present, "WHY?" Still remains unanswered in my tired brain. For the next week I will not be able to function without thinking about "what can I do to settle her" "what if her kidney's get really pissed?" "What if there is something I am missing?" "What food have I missed that might make this better or worse?" "is there a process in her body we could control to stop this cycle?" "if I try something new with her, will it make things worse?" I don't mind the thinking so much, it is thinking about the same questions over and over and over.. every day, all day, and no matter how much I read or how hard I try to understand the data I find when reading through articles way over my head, despite learning bits and pieces, it is the same questions, it is the same worry.. over and over.

Even on a frustrated day like today I am grateful. I am still determined. I still know we are working as hard as we can, and the fact that she has done so well reflects our efforts. I know no one will advocate for Abby like Derek and I do and I am so proud of our efforts.. Nothing makes me happier then being with my family, doing for my family, and forcing myself to read articles that are way past my pay grade to try to understand what in the world could be wrong. I am so proud of Abby, she does everything in her power to keep on keeping on, she finds joy and happiness when others could not. She is tough, and strong, and smart and far more patient then someone her age ought to be.

Right now I am torn- I am thrilled we are learning more about Abby, every single bit of data about her body gives me more information to advocate and search terms for my endless googling to learn how to help her. On the other hand, each new thing we learn seems like one more thing wrong, one more hurdle to figure out..

Thinking about how to cook a new food or where to find a new food is much easier. Cleaning up my messes in the kitchen after a day of kitchen science is easy. Making deodorant, lotion, toothpaste is easy. Exploring international markets for some new food or herb, is easy. Giving comfort to Abby is easy. Dealing with the bad days is easier then thinking.

If I had one wish, it would be the ability to shutdown my brain, for a few hours, maybe a day? To just be a Mom, to trust my instincts, to not have to think about everything everyday with so little progress.. To make a meal without counting how much protein, sodium, vitamin C, B, magnesium. To cook without having to think about where her gut is at and what it will handle this meal, or the next.. To clean not just for the joy of having a clean house, but to clean to make sure her exposure to allergens stays manageable..


I am not tired of fighting. Just thinking! The whole process of the pro's and con's of everything we do for Abby down to her toothpaste. The process of half the world thinking GMO's are evil, yet here in the States our government thinks they are the best thing ever.. Too much sugar is bad for many, but Abby thrives on it.. Why? No answers no matter how much I think. Treatments that work for many make Abby sick, why? Somedays the possibilities are overwhelmingly endless, and I get tired.

I was torn about even posting my pity pot rant, but we all entitled to be tired now and then. Good thing I am not one that believes in throwing in the towel, no matter how tiring the fight. After following so many blogs of children and adults suffering from a blend of what Abby deals with and not doing as well, I tend to feel guilty about being tired of anything. I don't know how some of these families function at all with all the medical interventions and pretty much depending on the medical world to keep their loved one's alive, I dread that far more then thinking. None the less, I do get tired and I am learning that is okay, I am entitled.

Tuesday, August 13, 2013

If it looks like a Duck, and it Quacks like a Duck...

The blood work from the Allergist/Immunologist showed all sorts of little goodies.

A few immunological findings that might explain why every time she leaves the house she gets sick, and why she does so much better when safely isolated at home.


Some results hint at some answers, definitely starting to paint a picture.


"Multi system involvement" "unique" " 1 of a kind. "


Likely Mast involvement, but we are adding that in at this point, not really removing anything else yet. Eventually Abby will need to have a bladder scope and biopsy to confirm IC or determine what else is going on..at that point we can do some testing for Mast Cell issues.


Of course, my hope was that some oddball finding would pop up, we would give Abby the magic pill- and we would finally end our journey.

Nope. We however, are very pleased we are learning more about Abby, and this Dr. has seen it before, and we trust him.

On a positive, we still think this Dr. is brilliant. He get's Abby as well as her Mito Specialist in Atlanta or her Family Dr- impressive, since most aren't capable of handling Abby and her growing complexities. Too many times Specialists don't have enough skill to see the issues, or don't want to, or they do and they tend to over treat which we are not a fan of.. treatments can cause as much damage as no treatments. Any Dr. that isn't smart, passionate, and well educated, isn't capable of handling or even recognizing her "uniqueness".


One share, her vitamin D levels went from a 13 to a 28. Since her D has been lagging and dropping for years now this was a great and welcomed finding. Not going to cure her, and she hasn't felt any better, but heck, we at least finally "cured" something! I will gladly take it as a win.

The Spectracell testing had shown her in the normal levels, and despite Spectracell having a great reputation and now considered mainstream and covered by most insurances we all had our doubts when we saw it as normal- this last lab work really validated to all of us that Spectracell is a wonderful and reliable test.

For the last few months we have been slathering Abby in Rx D(corn free, but has lanolin) oil. Like a ton. Apparently, it is finally working! She could not tolerate it by mouth, so we all figured on the skin was better then nothing, and I am just beyond pleased that something we tried, WORKED!

For now we continue to avoid anything Abby reacts to. We have done it this long, we are just used to it at this point.

Next up may be trying IVIg.. might help with the immune issues, and other funky Abby special stuff. In the works. Has risks, and odds are she will react, the question is, how "bad" will the reaction be?


The ride was hard on her yesterday, more so because of the dental work this past Thursday. She actually was bouncing back from the dental appt better then the previous one but yesterday's trip wiped any reserves she had out. So her favorite soup and a wonderful sweet treat on the menu today.

Maybe next week I can try something, different or new, at worst the week after. When I am not cooking funky food, it gives me time to catch up on other stuff around here, though I admit, I prefer the kitchen to the dust bunnies!

We are all tired, but feeling like we aren't just spinning our wheels anymore. This is good, very good.



Saturday, August 10, 2013

Second Dental appt, Second Crash..

By the time she got home and within the following hours, the shiners were back, the aching kidneys, the aching body.. the edema. Delayed reaction?


So frustrating.


We are hoping though since they did not do as much work this time, she will bounce a little quicker, I can hope right?


On a positive, each time she goes, means another few teeth fixed. That is worth it still for her and us.


Her stomach seems better this time too, at least 24 hours out, and that is a huge deal to be celebrated. Also means she might be interested in me cooking her something funky, which of course keeps me entertained.. Though I don't mind making chicken broth, rice, mashed yuca or mashed potato's days on end, it does get a little boring. :-)


I think about that for most folks, you go in to the dentist and do a little work or get a cleaning and just like that you move on with your day. Though probably not enjoyable, it doesn't stop many from heading back to work or school. I have known many who get crowns done on their lunch hour and right back to work.. no crowns for Abby so far, and it still is just so difficult for her body.

It just boggles my mind that a bit of dental work sinks her battle ship so badly. She still had not fully recovered from last months appointment.


Another appointment with the new Allergist Monday. Though I do everything in my power to avoid taking her from the safety of the house,especially when she is so flared, our fingers are crossed this Dr. can help her at least manage all these reactions, which makes the push on her health worth it.


Hoping my next post will be about the new leg of her journey.






Wednesday, August 7, 2013

Just Food, no recipes.


Above: Lacto fermented Nofu battered in a batter of potato starch, gf flour, egg and water plus spices. Coconut yogurt ranch and red pepper marinara. The nofu tastes like a cross between cheese and sour pickles- unique and delicious.

Abby's fake cheese- coconut yogurt, coconut yogurt/nofu fake "cream cheese, Smoked paprika, salt,pepper and other flavors-on gluten free noodles(tapioca and rice noodles)

Gluten free bread, toasted in a bit of salted grapeseed, nofu/coconut yogurt fake cream cheese mixed with some of the cheese mix from the mac and cheese.. not exactly normal, but she dipped it in her no-tomato red pepper ketchup and she said it was delicious! Close enough!

Tuesday, August 6, 2013

Black Sesame Candy



This is not an Abby recipe because she reacts to sesame, but for her older sister. Still corn free, gluten free, soy free, dairy free and I gotta say, I just love this stuff!

1 cup black or white sesame(roast 5-7 minutes)
3 Tablespoons raw safe honey
3 Tablespoons brown sugar

Combine sugar and honey on medium heat till brown sugar is all melted. (250 on candy temp, for chewy, 300 degrees for crunchy) pour in sesame seeds combine. Pour on to well greased baking mat let cool for a minute or so and pat and spread it smooth. Allow to cool and cut with greased knife. That easy!


I wrapped mine in saran wrap and used some recycled tissue paper that I cut to add bands to each candy. Easy, delicious- fun.

Chickpea Pie Muffin(gluten-free, dairy free, soy free, corn-free, seed and nut free)




It’s a Chickpea Pie in a muffin. We still are loving our roasted chickpeas. I find they swap out for pecan's in a lot of recipes so when I found a recipe for pecan pie muffins, I knew I was going to have to create a safe version for Abby. First, I need to warn you, these are good- too good. I suspect a million calories per muffin because these were so so sweet, and sticky, and just wrong kind of good. Second- easy, how something so indulgent could be so easy to make, is like a small miracle in our food avoiding world. :-) The only downfall to this recipe is they are not the most beautiful looking muffin! :-) More like a cookie/cake/gooey brownie in a muffin paper. These must be eaten hot, don't get me wrong, they are still good once cool, but eat it hot, with a scoop of coconut milk ice cream and a drizzle of safe caramel sauce- a sprinkle of crushed roasted chickpeas.. a dessert so rich you will forget about it being free of all the allergens(besides eggs).

Preheat oven 350 F.
Ingredients
1 cup Packed Light Brown Sugar
½ cup gluten free All-purpose Flour
1 cup Chopped or whole Roasted chickpeas
1/3 cup Palm shortening
1/3 cup coconut oil
2 whole Eggs, Beaten



Grease your muffin pan or use the liners.(I suggest liners)
In a medium bowl, mix together brown sugar, gluten-free flour and roasted(lightly salted)chickpeas. In a separate bowl, beat the palm shortening and coconut oil and eggs together until smooth. Stir into the dry ingredients just until combined. Spoon the batter into the prepared muffin cups. Cups should be about 2/3 full. Bake for 20 to 25 minutes.

Monday, August 5, 2013

So Coconut Easy Custard Pie. (Gluten free, corn free, dairy free, soy free, nut and seed free)



No crust, coconut and easy- cannot go wrong with this one! Mix it and bake it. Eat this cold.. some warm caramel sauce?




Ingredients:

3 large eggs, plus 2 egg yolks
1 cup sugar
1/4 cup all purpose gluten free flour
1 teaspoon vanilla extract
1 1/2 cups fullfat coconut milk(Arroy D if you aren't interested in making your own)
2 tablespoons coconut oil
1/2 teaspoon salt(pink himalayan)
1 1/4 cup flaked dried coconut

Preheat oven to 350°

Beat eggs with sugar in a large mixing bowl. Add gluten-free flour, vanilla, coconut milk,coconut oil, salt, and flaked coconut. Beat just until ingredients are combined.

Pour pie mixture into an ungreased 9-inch pie plate. Bake in preheated oven until custard is set and coconut turns golden brown, about 45 minutes.

chill for at least 4 hours or overnight.

Saturday, August 3, 2013

Kashk Update: gluten free and dairy free.

Well, I ran into a couple "minor" issues.

The big issue was that I should have coarsely ground the teff, unbroken,because despite 9 days of fermenting, it did not absorb much at all.

So, I figured well, I will just dehydrate it longer to remove the moisture, good plan but it did not work.


Why? because a lot of the moisture was "coconut fats" from the yogurt. Once I realized I could run the dehydrator for 20 days and never get anywhere, I opted to sprinkle some Teff flour on it. Finally, problem solved- it dried.

Downfall, adding the flour that late in the game really diluted the flavor.

Positive, I think it will work really well to sub a little flour in biscuits, breads etc.


Now on round two, trying coconut yogurt plus buckwheat and applied the lessons I learned in round 1.

It tastes great, it reminds me of that sour flavor in cheese it's, which makes it well worth the effort.

Friday, August 2, 2013

Bishop's Seed, (Carom, Ajwain)Sweet and Salty Crackers



Gluten free, corn-free, soy free, dairy free,

Here is a list of the names it is known by; Other Names:
Ajava Seeds, Ajowan, Ajowan Caraway, Ajowan Seed, Ajowanj, Ajwain, Ajwan, Ameo Bastardo, Ammi Commun, Ammi Élevé, Ammi glaucifolium, Ammi Inodore, Ammi majus, Ammi Officinal, Bishop's Flower, Bisnague, Bullwort, Carum, Espuma del Mar, Flowering Ammi, Grand Ammi, Omum, Yavani.


What exactly is Bishop's Seed? A spice that is most popular in Indian Cooking. It is also a popular home remedy.

A little bit of information from WebMD-

BISHOP'S WEED OVERVIEW INFORMATION
Bishop's weed is a plant. The seeds are used to make medicine.

The prescription drug methoxsalen (Oxsoralen, Methoxypsoralen) was originally prepared from bishop's weed, but it is now made in the laboratory. Methoxsalen is used to treat psoriasis, a skin condition.

Bishop's weed is used for digestive disorders, asthma, chest pain (angina), kidney stones, and fluid retention.

Some people apply bishop's weed directly to the skin for skin conditions including psoriasis and vitiligo.

Be careful not to confuse bishop’s weed (Ammi majus) with its more commonly used relative, khella (Ammi visnaga). The two species do contain some of the same chemicals and have some similar effects in the body. But Bishop's weed is more commonly used for skin conditions, and khella is usually used for heart and lung conditions.

How does it work?
Bishop's weed contains several chemicals, including methoxsalen, a chemical used to make a prescription medication for the skin condition psoriasis.

There isn't enough information to know if bishop's weed is safe. When taken by mouth, bishop's weed might cause nausea, vomiting, and headache. Some people are allergic to bishop's weed. They can get a runny nose, rash, or hives. There is also some concern that bishop's weed might harm the liver or the retina of the eye.

Bishop's weed can cause skin to become extra sensitive to the sun. This might put you at greater risk for skin cancer. Wear sunblock outside, especially if you are light-skinned.
Special Precautions & Warnings:
Pregnancy and breast-feeding: It’s UNSAFE to use bishop’s weed if you are pregnant. It contains a chemical called khellin that can cause the uterus to contract, and this might threaten the pregnancy.

It’s also best to avoid using bishop’s weed if you are breast-feeding. There isn’t enough information to know whether it is safe for a nursing infant.

Liver disease: There is some evidence that bishop’s weed might make liver disease worse.

Surgery: Bishop's weed might slow blood clotting. There is a concern that it might increase the risk of bleeding during and after surgery. Stop using bishop’s weed at least 2 weeks before a scheduled surgery.


So, a few in crackers isn't going to hurt her unless she ends up allergic,if not, it as a terrific seasoning. It is a strong flavor.. like if marjoram and fennel were combined. I enjoyed the flavor but it was a little shocking at first- if you haven't tried it before I recommend reducing the amount called for in the cracker recipe.

This "cracker" recipe I created based on a zillion versions of similar recipes online. Almost all were used in Indian recipes. There were quite a few that recommended this sweet and salty version, and my ears always perk up when I see "sugar"!!! I am hoping that digestive benefits plus sugar in this recipe will be a nice snack for Abby, something for a little kick, a little salt, a little stomach settling quality- either way, despite being very different from what we are used to, we really like these! I found we liked them best when we rolled them as thin as possible. I am finding the flavor to be addictive.

Sweet and salty Bishop seed Crackers

Ingredients:
1 & 1/2 cups all purpose gluten free flour
1/4 cup grapeseed oil
1 heaping teaspoon of bishop seeds/Ajwain/Omam/Carom seeds
3/4 tsp salt(plus some to sprinkle on top)
3 & 1/2 tblsp sugar
6 tblsp coconut milk or rice milk

Mix it all together. Add more milk if when you work the dough it won't hold together.

Roll out on a floured board and cut in desired shapes, sprinkle with salt(pink himalayan for us) and pierce a few times with a fork.

Bake at 350 for 15-18(or longer for a crispier cracker) minutes or until golden brown.


Thursday, August 1, 2013

Give me Money......

Call me old fashioned, but have you noticed what I have noticed? It is the trend these days to fundraise or ask for money for yourself.


It just makes me uncomfortable to see it, and I haven't worked out why.


Many blogs have a permanent "donate now" button on their pages. Needs range from wanting a trip to go play, to raising money for a trip with the band club, to money for fertility interventions,medical bills, household expenses and many more.


In the "good old days" a fundraiser for a family was usually established by what we deemed as a community leader. Perhaps a Senior member at the church, perhaps a long term trusted volunteer with any given program.. Until recently, fundraisers were hosted by respected community leaders not by one's self.


This has really bothered me and I am trying to figure out why it bothers me.

Fundraising for schools, clubs, Drs, associations, non-profits, churches, football, band, health issues, fertility treatments.. we are surrounded by a million hands always asking, Give me Money.


40 years ago, there just weren't as much fundraising, and never for oneself(unless homeless and begging) Collecting pennies at Halloween for UNICEF was a big deal, it was one of the few fundraising activities I was exposed to as a child. Honestly, I don't even mind the fundraisers where they are "selling" or exchanging an item for money- I think it is the concept that "work" or "goods" were exchanged. To simply give money with no exchange of goods? Not something I was taught to do.


Today, starting in kindy kids are sent to the streets to fundraise for their schools. (Even though we give them 3x as much tax money percentile wise).

Yet, how many times have you been told, "DO NOT give money to homeless people". Granted odds are they are likely to spend the money on booze or drugs, but what if they are fundraising for an apartment? Or for new clothes to go on a job interview? Or what if they have children in a car somewhere who want to have some school supplies without having to take freebies from the school? Having a sense of pride is certainly a concept important to me and I went out of my way to save money by cutting spending to make sure the girls could have school supplies they were proud of to start each school year. Are any of those reasons for begging any less valuable then asking for money for an association? For oneself because of complex needs? I don't think so.

Unfortunately, another potential issue with self fundraising is trust as it is with the homeless folks. How do I know you are using the money for what you said you are going to? When fundraisers were driven by our community leaders(and many still are) we felt far more comfortable that the money we gave was going to be spent as promised. When I give a couple dollars for a cookie, I am no longer "giving money" like I would with homeless, I have instead "purchased" an item and feel no further involvement, because I got what I paid for..

What are we buying when we give to individuals with "donate now" buttons?

We have many friends who's parents are incredibly generous with their adult children. From paying for the grandchildren's college, to extravagant christmas gifts, to amazing traveling opportunities and even to down payments on homes, or buying them a car- Today this is rare. Most that are raising children are on their own to get by.. as a parent who has opted to stay home over the years vs working, I commiserate with the tight budget. The only having one car, or no cellphones. No cable or no new clothes.. I get that realistically we live in a material world and with one of the worst recessions heavy in America, life isn't as easy as used to be.. still a heck of a lot easier then 50 years ago. When to be poor or in need would mean true hunger, no medical care, no housing vouchers, no free cellphones.. as American's we have a come a long way to at least trying to help our poor feel less deprived and often provide them with things like health insurance that many that pay taxes have yet to afford.. Social guilt? Class warfare? Many emotions drive these programs.


My daughter was telling me that many of her starving artist friends have blogs with "donate now". She does opt to donate, but she said they always write her a lovely poem or create some digital Art to "earn" and exchange with her. This I approve of or I am more comfortable with.. I recognize times have changes. We often no longer depend on family as in the past. We often don't know our neighbors as we did in the past.

On the other hand, again and again there are scandals of people saying they have cancer and begging for handouts.. we have too many non-profits up to their ears in corruption to count..


I am still not sure how I feel about "donate now" on a persons blog. I won't do it, but I hesitate to judge.

I am one of those people that always has 10 dollars for the homeless person. If buying a beer gives him peace for a day, I gave a grand gift.


Admittedly, I am far more likely to support someone who is like my daughter's friends and are industrious with their needs, gifting a homemade bracelet, a piece of art- they are no longer beggars, but hardworking American's working to get by, not just saying Give Me Money!



 
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