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.

Friday, August 31, 2012

Socca- easy, delicious and safe for Abby

It really has become a daily ritual for me to google for foods for Abby to eat. Somedays I come up empty, and then other days I score a home run.

We have been adding more chickpea to Abby's diet. We have found if it is in flour form, or pureed she is able to tolerate it very well. I think I have posted before that chickpea's are full of amazing nutrition, which makes me anxious to find more recipes to incorporate it into.

A few months ago I had seen a recipe for Socca bread in a gluten free/dairy free cookbook. Then a few weeks ago on one of the travel channel shows they were talking about Socca in South America and in Europe.

At that point, I had to make some.

1 cup bean flour
1 cup water
1 Table spoon olive oil(we used coconut)
seasoning- we like heavy rosemary, but depending you can season it however you wish.

onion- if you are an onion lover, we diced and sauteed a good amount of onion and threw it in as well as we were a little worried that the bean flavor would be more then we could handle directly.

Preheat oven to 425- we used a 10 inch metal cake pan, we heated the pan until very hot in the oven, pulled it out and quickly added a tablespoon of grapeseed oil and poured the mixed Socca in- baked for 40 minutes.

It was a hit- easy, flavorful and everyone loved it.

We try to use less fat for Abby. I think most of the recipes for Socca call for a lot more oil and always olive oil. There are big variables in texture. Some bake theirs to be more dense and custard like, others thinner and chewy. Some use a pizza stone, etc. We are playing with it to see which version we like the best.

Great thing, is you can mix the bean flour in the morning and keep it in the fridge- the longer you let it sit, the smoother the finished texture gets.

My favorite way to read about Socca recipes, is to search google images. I search for "Socca recipes" and pages of terrific images are there- from a crepe like texture to more of a cornbread texture.

Nothing beats a quick, easy, and nutritious side dish.

Wednesday, August 29, 2012

What Makes a Great Dr?

Yesterday, we took Abby back to our family Dr.

When we started the Specialist train a couple years ago we moved her to a Ped temporarily since most of her Specialists were on the Pediatric train.

The rest of us have continued to see him.

First, we really really respect this Dr. First off, he is smart! One of his best attributes is he is the first one to admit when he doesn't know. Best part, he just has a special passion for what he does.

When you go into his office you come out of your appointment feeling like you had a tune-up and life is perfect. He just has an amazing and I mean amazing bedside manner.. I think everyone knows that one guy at the party, or that one Uncle that EVERYONE waits to show up to any get together because without him the party won't be perfect- that is our Family Dr.

He isn't perfect and doesn't try to be.

Yesterday we tried to give him the headlines on Abby to get him up to speed. As I data dumped and explained the last couple years of medical data,Abby got more withdrawn and I could tell he and I weren't on the same page.. I tried changing what I was sharing, but for the first time he wasn't in perfect timing with us.. He talked about ADD meds, he talked about all sorts of things- and for the first time he managed to annoy me.

When we got to the car the lightbulb came on. I never explained to him about Mito. About Abby's small gas tank.. He treated her like a normal old patient that needed to dig in deep and find that energy and drag it out. He did not understand that there is no hidden source of energy deep inside Abby waiting to be pulled out of her.. there simply isn't enough energy. I tried to explain that stimulating her brain to try to get her body going, would likely backfire badly. We disagreed.

Of course another of things we really like about him is that he advocates for the girls- I can be honest and admit I am overbearing. Sara has made it clear that she can handle her own medical issues, thank you very much, and I am totally okay with it because the Family Dr is very supportive of her and a wonderful way for her to grow up and take personal responsibility for herself.

OF course after years of Drs. treating Abby like she was some lazy whinny girl she was instantaneously on defense. So, I think that threw our beloved Dr off, Abby in the past communicated well with him- as I said, he is almost irresistible, you just cannot help but share and feel comfortable with this guy. So, as he suggested different options to HELP Abby, he unknowingly triggered some very strong emotions in Abby. As she clearly withdrew it threw him off, and threw me into a frenzy trying to speak for her- kind of a shakespearian tragedy of an appointment! So was not funny yesterday, but today I can grin about it, because I woke up trusting him just as much as I did before yesterdays appointment, and maybe a little more- he brings to the table a new perspective and a perspective full of hope, certainly cannot hurt to try at least thinking upbeat about all this, we have gotten terribly serious over the past couple years.

Abby and I chatted about it yesterday- I get her annoyance, but for the first time I find myself advocating for this Dr. Surely, he needs a chance to read about Mito,Mast - we did kind of put him on the spot. I have spent 24/7 reading all this junk and still cannot explain to someone else with any technical finesse what Mito or Mast is or isn't..

I wonder how many Drs. have left the room from us with the same feelings we had yesterday- with them wondering, humm, usually the Neumans get it, why are they being so dense today?? I am sure it has happened.

Last night we forwarded her thousands of records, and of course some good literature on Mast, Mito etc. The fact that he asked us to send it all, well he just got another star.

I think part of the issue is that we are in a space where we are if not happy to maintain Abby where she is at, content. Not that I don't have hope, but we have learned the hardest way NEVER to just "try" something Abby- we are hesitant,nervous, meds terrify us, she reacts to everything and that causes more "Mito" issues. Last time we saw him with her, we were full of anxiety to fix her. We aren't that same family anymore. Of course, we want to fix her but we have learned that fixing Abby isn't going to come through a pill and if she needs a pill we had best be ready to do some serious homework.

So, do I think he is a Great Dr- Yep- the very best.

Tuesday, August 28, 2012

Coconut Yogurt Homemade

Yummy looking isn't it? Thankfully it was only my second attempt, the first attempt wasn't a good one! :-)

Smooth, firm and tangy- we all agree like a good greek yogurt without the "dryness". Coconut milk has a natural sweetness so it really is a plain yogurt even I with my sweet tooth found appealing!

Abby tried it- despite even my effort in buying a vegan(and not cheap!) culture she reacted. SIGH! Doesn't mean I have given up though. I suspect 1 of 2 things, either the cultures had corn,soy or dairy hidden(likely) or she isn't tolerating fermented, which is also possible. She does get a touch of Braggs apple cider vinegar now and then but usually baked or cooked into various foods.

There are plenty of cultures out there waiting for me to google and purchase them, now that I have this down, I just need to hunt down some more cultures to try.

On a positive, I know I can make coconut yogurt and it tastes thousands of times better then the So Delicious brand in the grocery section! And it is much "cleaner" and healthier eating. I think I will have to make a batch or two of dairy for Derek, he does like a good bowl of yogurt now and then, and it is absolutely terrific in ice cream.

I had ordered the Yogourmet quart yogurt maker a couple weeks ago. It still had not come on Saturday. We were stopping in a few of my favorite thrift shops and I spotted a like new Salton 5 individual serving yogurt maker sitting on the shelf begging me to haul it home. For 4 bucks I figured it would entertain me until the new one showed up.

Here was the recipe I followed;

Coconut Yogurt

makes a little over 3 cups
2 1/2 cans coconut milk or cream, approx 20% fat(more fat the better!)
3 Tablespoons tapioca starch
3 teaspoons granulated sugar(yes you need it! Coconut milk doesn't have lactose to feed the culture, by the time it is done culturing the sugar will all have been used anyway.)
1 packet yogurt culture(Or 2 heaping tablespoons of So Delicious plain coconut yogurt)
1. Combine 2 cans coconut milk/cream and sugar in a medium saucepan.
2. Begin Gently heating on medium heat. In the half of can of coconut milk blend in your tapioca well and pour into pan with the coconut milk and sugar. You will need to stir until it hits 180. Take the pot off the heat and let it cool to between 80-100 degrees- less then 80 and your culture won't start, more then 100 hundred they die- mine was at about 95 when I mixed in my culture.
3. Place a few tablespoons of cooled coconut milk mixture in a clean cup. Add the culture powder or the So Delicious Coconut yogurt and stir until it smooth. Add a little more coconut milk then stir the culture into the main saucepan.(make sure you mix the culture throughout all the coconut milk.)
This is when I used my yogurt maker and followed the directions for the maker. I fermented mine for a full 22 hours! Perfect tang and texture. From reading a number of blogs, many people chose to ferment coconut yogurt for 18-24 hours, which is twice as long as dairy.

6. Pop in the fridge and leave for another day(at least until totally chilled) before eating.
If you want to add in flavors or fruit, don't do it until it has completely chilled.

You don't need a yogurt maker- you can make yogurt in the oven, in a crockpot, folks even in make a "ice cooler" version..

Though I succeeded I am a little frustrated that Abby reacted. Probiotics are the golden rule for anyone who has GI issues from reflux to major issues like Abby. Especially folks like Abby who have more then their share of antibiotics daily probiotics are a must. So far, via my corn-free group, I don't think there is one yet that is free enough of her allergens to give a go. I am hopeful that either she will continue to heal up enough that she might tolerate one of the cultures I find, or a company will produce one that is truly clean and they don't play the "parts per million" game and claim she cannot possibly react to that minute amount..

I have about 2 weeks to figure out how to use the coconut yogurt.. some homemade ranch dressing, some in some homemade ice cream, maybe strain some to make faux cream cheese.. the list is endless. In the meantime, will be on the hunt for safe cultures for Abby.

UPDATE: Abby did fine with the yogurt stared with the So Delicious plain yogurt.

Monday, August 27, 2012

Good Luck to All you Back to Schoolers!

I have been watching the news, papers, facebook and it reminds me of the years my girls were in Public School and all the preparation's for that 1st Day of School.

The supplies- good heavens, the last year in Public Elementary I must have spent 600 bucks on the supplies. Then the backpacks, clothes,haircuts, Drs. appts. A serious chunk of change to go to our taxpayer schools or private school.

The emotions of anxiety,excitement. I can still remember worrying if I would like my Teacher, would I be able to find my classes? Were my clothes okay? Would I have any of my friends in my class? Who was going to like me this year? Was my hair okay?

From a Mom perspective, being up and dressed at dawn to drive them to each of their schools. Running errands, cleaning house, and being back in the carline at least 30 minutes before they got out- Abby especially needed me to be first in line. Then the running to store at 7pm for supplies for the zillion projects they seemed to need to have at the last minute, the first cold/flu within a week of school starting.. play dates, homework, cranky kids to wake up, wash and dress in the morning.. packing lunches they might actually eat but healthy too.. explaining a zillion times why they could not eat the fatty hot lunches... parent- teacher conferences,fundraisers, birthday parties.. exhausting!

Today I am thinking about all those things with all the parents as you pack them up, feed them breakfast and hope for the best.

Admittedly, a part of me misses those years. The first day of school is as memorable as any of our holidays. It is a rite of passage in America.

Then there is the other part of me, the Mom to college age kids, the Mom to kids who also home schooled, that doesn't miss it for a second!

Good luck to all the kids making it through this first day, and to all the Moms and Dads who are likely just as nervous and excited.

A little part of me is very happy that all the children will be in school again- I can shop in peace, or at least more peace then usual! :-) I am definitely appreciating this chapter in my life, and just a hair guilty I am turning into such a cranky old lady! But, while I shop in some peace this week- I will have no quilt! If I cross the path of a screaming toddler, beware, I won't be able to help myself from glaring at you for disrupting the first week of school for us old cranky ladies! :-)

Saturday, August 25, 2012

Mast Cell Activation Syndrome

A couple weeks ago I had written to a specialist who is helping to define Mast Cell Activation Syndrome. Currently, while most Mast Cell Specialists recognize MCAS is a condition within MCAD, there isn't any diagnostic confirmed criteria established. The Specialist responded and gave us a flutter of hope that maybe some of what is going on with Abby is Mast related. This coming week we are going to run some more blood work and see if it is a potential and then see if we can try a few of the treatments to see if they alleviate some of Abby's misery.

We still agree there is a Myopathy and that without a doubt there is a Depletion-based on her muscle biopsies and medical records since the womb, and Dr. Kendall but Abby certainly doesn't do a very good job fitting into the clinical picture :-). I think the fact that the medicines,corn, miralax all caused such shocking responses, from drops in BP to more fatigue, horrid rashes, joint and muscle pain and weird edema. Then also the fact that just leaving the house can trigger the same symptoms is what has lead us to want to rule out the Mast diagnosis. Interestingly enough, the Specialist said Abby's weird kidney issues have also been found in the MCAS population.

I have also gotten the sweetest notes from a few people who have read my blog who have also encouraged us to explore MCAS and whether that is the heart of the issues with Abby. I cannot tell you grateful I am to the patients,Mom's,friends who take the time to read Abby's blog and have taken the time to try to help us figure it all out.

This is a great publication that outlines MCAS well. The paragraph below is what caught our attention -

Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation.

Fits our Abby enough to justify investigation.

A friend on one of my groups shared that a Dr. Theoharides who is one of the top Mast Cell specialists in the World found that Mast cells can disrupt the mitochondria- so I am hanging onto that little jewel of information as well.

I have found it very interesting on our journey how many Mito patients have a whole slew of other conditions triggered by the Mito, or that trigger the Mito(our hope.).

If this is ruled out, I am not exactly sure which direction we will go next. Maybe exome testing will give us a better idea. Or maybe we will find Abby just has her very own thing going on! We always tease that our families excel at creating one of kind people.

Thursday, August 23, 2012

Abby's Allergy-Free Fudge!

Not Chocolate, but that great rich and creamy texture that is unmistakably fudge!

Old-Fashioned Penuche Fudge
1 cup granulated sugar
1 cup brown sugar
2/3 cup coconut milk(half "cream" off the top and half fluid off the bottom)
2 Tablespoons Lyles Golden Syrup
1/2 teaspoon pink himalayan salt
2 tablespoons coconut oil
1 teaspoon of vanilla
use coconut oil and grease loaf pan(8x8 pan spreads it thin, so a smaller loaf pan would give better size pieces)
Combine sugar,milk,Lyle's golden syrup,salt in 2 quart saucepan. Cook over medium heat, stirring constantly, until sugars are dissolved. Cook, stirring occasionally, to 234 on candy thermometer(or until small amount of mixture dropped into very cold water forms a soft ball which flattens when removed from water.) (I used the candy thermometer it did not take too long for it to reach temp.).

Remove from heat; add coconut oil. Cool mixture to 120 degrees without stirring.(Bottom of pan will be luke-warm.) (This seemed to take forever- probably around a hour)Add vanilla and beat vigorously and continuously until candy is thick and no longer glossy.(mixture will hold its shape when dropped from spoon) Spread mixture evenly in oiled pan. Cool until firm. (It was clear, and turned milky with more blending, it stayed glossy forever and I started wondering if that was the coconut oil.. it did start to go matte finally and it held into ribbon shapes as I mixed- I decided that was enough!)

I strongly suggest lining your pan with tinfoil or parchment paper that is well greased- what I found is the coconut oil if too warm melts, too cold won't come out- next batch I will line my pan, chill, and pull the tin with fudge out, will be easier and tidier to remove the fudge. :-)

NOTES: This came from my Mom's old Betty Crocker cookbook. She received it as a wedding gift and spent the first few years of marriage attempting to cook everything in the book! When my Mom was terminal and asked if there was anything I wanted to remember her by, without a hesitation I claimed her old cookbook. She teased me about my sentimental ways, but I pointed out that over the years, divorce, remarriage, and the very few things she saved, she kept that cookbook-ha! I know where I got my sentimental side from.Whenever I miss her, or a special food she would cook, it gives me such comfort to flip through its tired and torn pages. I keep meaning to buy a laminator and start laminating each page to preserve it. Over the years at various thrift stores I have seen similar books in far better condition, but this one is very special- my Mom wrote personal notes about each recipe- from Great! to Eh! to YUCK! Whether she liked it but no one else did, or whether my Dad liked it and no one else did.. to add more of something or less..who's wedding she baked something for.. which neighbor shared a meal with what recipe. it is a book of some of my very best childhood memories.

Funny thing is, she did not make one single candy- no checkmarks, no spills, no stains and no folds. I was flipping through it and decided it was time someone tried one of those candy recipes! :-)

I swapped Lyles golden for the corn syrup, coconut oil for the butter and once it had cooled instead of beating it with a wooden spoon as the book directed I used an electric hand mixer! But just tickled with the end result. The Lyles has a "butter" flavor, and it reminds me of butterscotch brownies in flavor.

You can also make this recipe into chocolate fudge- by using 2 cups of granulated sugar instead of just one and eliminating the brown sugar. You also add either 2 ounces unsweetened chocolate or 1/3 cup cocoa powder to the sugar at the beginning.

Old cookbooks are terrific to learn how to cook with "real" foods. Anything before the 1970's is less likely to require a premade mix(like instant pudding). I find they are simpler recipes that are much easier to substitute allergy friendly ingredients(like Lyles instead of corn syrup). Half priced books isn't the best for the oldie's but local salvation army's, church thrift shops.. anywhere that sells clothes from at least 2 decades back is your best bet! :-)

Most Viewed Posts-

I check now and then to see where and who is visiting my blog, but I usually sort by past day or past week. Last week I sorted by "all time" and was a little surprised by one or two in the top.

1)Shirataki noodle cookies- hands down by a landslide my number 1 most viewed page.

2) Q and A time post- a TON of hits!

3) Tied for Third- The Case of Landon Weber and Miralax, maybe not as safe as they say-

If I think about it a pretty good reflection on my huge variables in topics I like to post on.. but when I check the google search terms that bring folks to my blog I am always a little startled to see the Landon Weber post pop up again and again. I haven't heard of any new cases this summer out of our Med Center knock on wood right?

Miralax- I am still reading about the terrible reactions a small population of users are being afflicted with.. I will always be incredibly grateful to the Mom that wrote me when she saw the rash+miralax and warned me! I standby my opinion, for some it is perfectly safe, but for some it can be life threatening. The package should have a simple warning of potential side effects in the pediatric population.

Of course my low calorie weird and delicious chocolate cookies are at the top! :-) I still adore those and am considering making a batch for my munching pleasure this week.

Abby is still struggling with edema that we cannot seem to beat- we eliminated sodium, added it, increased protein, reduced it, and nothing in particular is "triggering" the edema. We are trying to ignore it for now. She is for the most part back to baseline- still sleepy, and achy, but I heard laughter from the back of the house before I went to bed and felt very content knowing she is back on track. Tried another type of organic apple yesterday- within 10 minutes BP drop,headache, cramping stomach.. So clearly we must remove apple too. Thankfully, she does okay with certain organic pears, grapes,figs and peaches- four fruits is better then none!

Next week we see the family Dr. and see if he will volunteer to be Captain of the Mast Cell investigation- sure he will, but we are ready to get moving on that! Found two compound pharmacies we are willing to try so hoping they "get" how sensitive Abby is these days. I have a Dr. appointment after Abby- it will be the first time I have been on the scale since the end of December. I have no idea how much I have lost but went from an 18 /20 to a 4/6- I have refused to weigh myself. In past diets I lived for the scale and this time I decided I did not care about the scale- I am a little anxious about scales so not sure whether to be happy or not with whatever weight pops up! LOL

Wednesday, August 22, 2012

Make your own Coconut Milk

We use a lot of coconut milk and rice milk(rice dream unenriched is the safest box milk for Abby and even then it does have some gluten)for baking and cooking. Abby rarely drinks rice or coconut milk.

There are a few brands that come in boxes. Unfortunately, all corn contaminated. Or full of various chemicals that her sensitive system doesn't care for much. Which leaves us with canned milk. There are only a couple brands (thai organic) that are clean enough(even then iffy at times) for Abby, and they are NOT CHEAP! :-) Plus, we have been working toward using fewer canned products.

A friend posted that she makes her own rice milk.. and then I was poking around blogs and saw a post about making coconut milk. The Author added more water and guar gum to the coconut milk she used for drinking, but left the coconut milk she used for baking without any added items.

Yesterday I baked and cooked for Sara and Derek and that Mom guilt made me feel bad I had not done anything to further Abby's improved diet plan. Granted, she had plenty of ready to eat items but I try very hard to increase and/or improve on her diet daily.

As I was trying to settle down for the night the guilt got to me! I had to think fast about what I could do in the few remaining awake moments, which reminded me about homemade coconut milk. I opened the pitcher for the Ninja and dumped in 2 cups of unsweetened dried coconut and 4 cups of water.

This morning I found it had absorbed a lot of the water. I added another 1/2 cup and turned on the Ninja for a few. Very quickly the coconut cream stuck to the sides and I had a nice looking milk. I then strained it in a mesh. Got a ton! Was pleased until I could not figure out how to get all that delightful cream out of the blender. I scraped out what I could and decided to gently heat the coconut milk I strained and all the clumps of cream I had saved. It did not take long to warm enough to melt the cream back into the milk. Once it was warm but not hot, I poured it back into the Ninja and blended some more. The warm milk melted the residual cream off the sides. I then strained one more time, because with all that cream there was a lot of stuck bit so of coconut.

Next time, I will warm the coconut and water after it soaks before I blend. I also really need a bigger and finer metal mesh strainer(on the list!).

Hands down a very nice product! And cheaper then my canned version. I will still keep canned on the shelf, but this will be the new go to coconut milk. I am curious to see how much coconut cream solidifies- I have some recipes that need far more (whipped coconut cream)cream, and then some that need less..

With a better strainer this is a very quick and easy and healthier option-not to mention doesn't have that canned flavor!

Tuesday, August 21, 2012

Update- Better Coconut Caramel

picture from the recipe LINK below)

We have been on the perfect caramel quest. Making dairy free for Abby and with dairy for her sister. I just wasn't too happy with our first caramel attempt for Abby. Since I had never made regular before I decided that is where I should start.

Had a batch or two of "burnt" or "grainy", but finally conquered it with some level of accuracy.

I opted to use the "dry" method for making caramel. No temperature watching. All about the color and the smell, a very visual approach.

It is as simple as it sounds. I pour the sugar into a thick bottom pot and make it a level layer. Turn the flame on medium-low, and leave it alone! :-) When it starts to melt and brown around the edges I move it around a bit, to avoid hot burnt spots. I find you don't want to be messing with it too much.

When it is melted and a nice caramel color(a few lumps won't be an issue)I turn off the heat and stir in a tablespoon of coconut oil. Then quickly followed by some coconut full fat milk from a can. PResto! Lots of stirring, but so far our best batch. If you notice lumps(I usually have some) I simply put a fine metal mesh strainer over a bowl or jar and strain the caramel- beautiful! Keeps the fridge for a good few weeks.

This LINK was the guide/recipe I followed to perfect the coconut caramel sauce- the pics and directions are terrific.

Just simply substitute full fat coconut milk(depending on the brand of canned milk you will get more or less cream- the more cream in the can the better, you may need the cream from more then 1 can to get the right amount.)

I use coconut oil- no problems at all! You don't get the "butter" flavor of course but still delicious!

Because my vanilla hooch is still curing, I skipped vanilla extract, and opted for a 1/2 teaspoon of pink himalayan for a "salted" caramel sauce.

Candy making is just one of those area's I haven't explored past making easy fantasy fudge(chips, marshmallow fluff etc)but right now we have only found 1 candy that is packaged that Abby can eat- which in a family of sugar lovers is not an acceptable amount of candy! :-) The candy she can eat is called Reed's ginger - they are like ginger flavored taffy- really yummy.

With the holidays approaching I may have to figure out corn free marshmallows, or corn free/dairy free /chocolate free fudge...

Abby is still struggling with some edema, but was down quite a few pds yesterday. She was moving around better last night. So hoping she has finally got back to her pre-travel baseline. Last night she tried a piece of gluten free buckwheat bread, and loved it! So another new one! Plus, buckwheat(gluten free)has a terrific nutrition profile. We decided that it would make a great stuffing for this Thanksgiving- so making safe stuffing is on the "figure it out" list. :-)
Here is a pic of her "healthy" bread that is the new favorite, will post recipe another day.

Monday, August 20, 2012

Bean Flour

(Want the recipe for these green pea chocolate chippers? Visit this LINK.)

Some bean flours we are either working with, or have on order. Most of us are familiar with a few "new" to American's flours thanks mostly to the Paleo movement. Coconut flour is a favorite. Its down fall is it absorbs enormous amounts of fluids and I have found it is best to be used with other folk's recipes to get it right- no fun for experimenting :-) Almond flour, we don't use it, but know tons that do and love the flavor and texture. Sorghum flour- you will find it more and more blended into various gluten free prepared mixes, it really is a terrific flour that to us mimics wheat the best.(sadly another one Abby doesn't tolerate) Then another would be millet flour. We do use it. It cannot replace wheat but mixed with rice flour and tapioca flour it adds texture and a mild flavor we really like.

Chickpea flour- our first choice and we have begun trying it in various recipes. It works as a terrific thickener and has the benefit of a better then Wheat nutritional profile. It is a heavy flour, but can partially replace flour with a mix of other lighter starches. Depending on the flour the flavors vary. Any flat breads do really well with chickpea flour and it is considered a "staple" in other Countries. If you want to hunt for recipes you can search for, Besan flour recipes,Chickpea flour recipes,garbanzo bean flour recipes and Gram. There are other names in other countries for chickpea flours, but this should get you started.

Navy Bean flour- very similar to chickpea flour. We have not tried yet. The nutritional value isn't quite as good, and probably closer to Wheat from a nutrition standpoint, but for cooking it is used the same as Chickpea flour.

Green Pea Flour- Really! There is such a thing! Bob's even sells it.(we don't use Bob's as they are high risk cross contamination). I don't much about it besides it has a better protein profile. It is a lovely green color which makes it tempting for various recipes. It also appears to have fewer calories.

Mung flour- not one that I have tried, but is a very nutritious starch. Commonly used in noodles. It appears it can be used to make various desserts so I suspect it is lighter then the other flours.

Lentil Flour- another one that probably is similar to the others above.

Soy flour- which we don't use because of Abby's allergies.

Some other interesting "flours" that I am also going to consider are;

Pumpkin powder- again, really there is such a thing! Abby has avoided pumpkin but if she gets to the point where this is something she can tolerate, I am ordering ASAP. This would be a lot of fun to play with- think about cookies,pies,custards,smoothies,creamer... YUM!

Sweet Rice Starch(not flour also know as mochiko)Very popular in Asian cooking and baking and Abby and I have seen more then 1 steamed dessert we are anxious to try with this starch.

I am betting there are dozens of other flours and more to come. Plenty to keep me experimenting.

We are on hold for another week because Abby is still recovering from traveling. She did look gobs better last night, and this morning looks pretty good. Hopefully, the up and downs with all the crashing and short circuiting is past her and a few more days of rest she will be fully recuperated.

Saturday, August 18, 2012

Up's and Down's

After a promising start to the day yesterday, Abby crashed after lunch. She just feels miserable. After working so hard to feel better, this must be twice as terrible for her. The rash settled on her leg, but she felt so terrible she did not care.

It always leaves me feeling so helpless to comfort her. Incredibly frustrating.

Which left me to bake all day! LOL Sara got a beautiful loaf of regular raisin cinnamon bread. Abby got a new gluten-free white bread that I think may be our new favorite! I also "tried" to make Abby some caramel "puffed millet/rice" balls instead of popcorn balls. What I found was that Lyle's golden syrup is amazing stuff.. I probably should have used a little honey or molasses with it(so the substitution guides suggest)and instead of butter I used coconut oil. When I poured that goodness over the puffed rice and millet and then waited, I couldn't get it to form into balls. So, plan B! I threw it on greased cookie sheets and baked it for 5-7- turned out like cracker jacks! Not as great as holiday "faux popcorn" ball, but delicious anyway!

LINK http://www.zojirushi.com/recipes/gluten-free-green-tea-bread

Ingredients (for 2-lb. breadmaker BB-PAC20):
1-1/2 cups (360mL) milk(any but rice milk-rice milk is not good for gf yeast breads)
3 large eggs, beaten
1 Tbsp. (14mL) apple cider vinegar
3 Tbsp. (39g) vegetable oil(grapeseed or liquid coconut)
3 Tbsp. (60g) honey(if you want a sweeter bread add an additional 3 tablespoons of granulated sugar)
1-1/2 cups (222g) brown rice flour
2-1/3 cups (327g) potato starch

1 Tbsp. (8g) xanthan gum( I use guar gum equal amount)
1-1/2 tsp. (8.4g) salt(pink himalayan)
1 Tbsp. (8.5g) active dry yeast(red star quick rise because it is corn free)

This recipe was developed for the Home Bakery Virtuoso™ and Home Bakery Supreme® Breadmakers (BB-PAC20/BB-CEC20/BBCC-X20). Adjustments may be required for baking this bread in other models of the Home Bakery.
In a large bowl, mix the flour ingredients (brown rice flour, potato starch mix well with a whisk.
Make sure the kneading blades are properly attached, and add the liquid ingredients (milk, beaten eggs, apple cider vinegar, grapeseed oil and honey).
Add the flour mixture from step 1, the guar gum and salt to the baking pan. Make a small indentation in the flour with a spoon, and place the yeast there. Make sure that the yeast does not touch the liquid and salt.
Place the baking pan in the bread machine- I used the gluten free cycle 2 pd loaf, and medium crust.

press START. When add beeps sound, use a rubber spatula to push down flour(from my pic you can see I did not do a good job!) that may be stuck to the side. Please be careful if the kneading blades are moving.
Once the bread completes baking, remove immediately onto a cooling rack.
Allow the bread to cool. Slice and serve.

Friday, August 17, 2012

Signs of Recovery.

Pleased to say, Abby had some bounce finally last night.

Her GI issues are still flared, and she looks like she got run over by a truck, but she did feel well enough to let me wash her hair. She was able to eat a bit of protein which is a sure sign we are back on track.

Boy, this week was frustrating for me. That 1 day out of the house on an adventure will likely cost her 2 weeks.

If I stop for a second and look back to February,the last time we traveled, Abby did not bounce and her decline was part of what triggered project elimination. Definitely, a massive improvement between the last trip and this one..

Hopefully, throughout today and this weekend we will continue to see little bits of improvement and my original prediction of a week down and out will be correct.

The one thing that just ticked us off was the funky rash. The one she had that went away after removing the Miralax? A patch on her leg, on her face. Why after everything Abby has been through would a rash send us into panic? I suppose because it was the last thing we dealt with before project elimination- so it triggers memories of very bad days.

Lots of sleep, nibbling on gentle allergy free foods. She is on a sleep for 4 up for 2 schedule. Once that moves to a sleep for 8-12 with naps I know we will be back in charge.

Wednesday, August 15, 2012

Mitochondrial Disease Awareness Week, just a month away!

Mito Awareness week is coming, and I am facing my normal, "How can I make a difference?" inner argument.

I am not a fundraiser. I am not a salesperson. I am not particularly eloquent, so what can I do to bring awareness? Oh, and did I say I am not rich either? :-)

There are things you can do.

1) Wear green everyday to the office. Someone will get curious and ask! Maybe even a name tag that says, "Ask me why I am wearing green."

2)Post the links to UMDF and MitoAction on your facebook wall. Or to twitter.

3)How about a piece of green ribbon tied to your wheelchair?

4)Take the time to talk to other Mito patients. Hands down, I have learned the most about Mito from other patients, even if you are a mito patient, "awareness" of the many faces of mito is something all of us are still learning. Heck, most of the time we don't know what is coming with our own brand of Mito- sharing among us helps clarify and define this disease. Your story has power.

5) Need a check up? Schedule your yearly physical that week, wear green to the Family Dr. office and talk their ears off! As I call it, do a "data dump" with any new Mito facts you have learned this year.

6)A green lightbulb.

7) Pack a Mito Lunch! cut out a green awareness ribbon out of construction paper and tape it to your lunch bag.. let the kids decorate their lunch kits with printed and cut out pics of Mitochondria,awareness ribbons, the mitoman!

8)Wear a green awareness ribbon pin. Even if no one asks, someone will remember that ribbon and if they see it again, they are more likely to ask about it.

Help a friend with a fundraiser- you can post an announcement on your blog, offer to make print outs, offer to show up and support them. This year we are making ribbon awareness pins- very cheap and easy. I don't even have to hand them out, because I am simply making them for other Mito families that enjoy handing them out.

As patients and families with Mito we are the most important part of the Awareness Week. We all look at the huge breast cancer campaigns and wonder why Mito doesn't have the resources. Fact is, for the last 3 generations breast cancer was talked about and suffered way before any fund raising began- the Awareness of breast cancer was already 30 years in, so way easier to fundraise for a disease the world already knew was devastating. Mito is new. Most folks have never heard of it, don't understand what Mitochondrial disease is, heck, as a Mom to a Mito Patient I really am still clueless- our voices are the most powerful tool to gain awareness. The fact that our Drs. and we as patients only know part of what Mito is, that we are all still learning is a powerful fact to share.

Consider your Mito Awareness week a success if you learn about someone else's mutation. Or their secondary disease processes. OR if you posted on Facebook. You don't have to spend a dime to be an essential part of awareness week. Your voice is priceless this year and for years to come.

Frankly, I think in the old days when the family sat around the table and discussed a family member or a friend who got the dreaded cancer diagnosis was a far more powerful and real form of awareness compared to pink ribbons,informercials, celebrity announcements and fancy dinners and fundraisers. Frankly, I don't listen to what Movie stars are paid to say, and I am not interested it buying a trinket where I have no idea where the money is going- real life, real families, suffering a hideous disease is a far more powerful tool then money at least for now. Without families sharing no one will understand what monster their money is fighting.

Bringing Awareness is different from fundraising, and even more crucial. Whichever you chose to do, or if you do both you made a difference.

Tuesday, August 14, 2012

Travel is bad..

She fought all weekend and we watched her slowly spin up.. Terrible couple days of misery, GI issues,disrupted sleep, pain and autonomic issues,allergies, head cold and who knows what else in full flare Sunday night and doesn't feel or look any better this morning- so frustrating for her and I.

Hoping we won't have to put her through anymore travel anytime soon.

Back to the ABC's of project elimination, fresh sheets and comfy bed,steady climate control and lots of fluids.

We were really hoping with all the improvements this wouldn't happen this time- Nope not quite well enough to handle that much activity/stress.

Figuring by the weekend she ought to be on the rebound.

Monday, August 13, 2012

Here we go again!

Admittedly, with Project Elimination complete, we have felt a little lost without a mission. On the positive we have slowly added a few new foods with success, but we are missing the hunt for new and safe products, the research, the food diary,kind of like heading to work each day to work on a project you have faith is going to help your career and your company tremendously. Abby is far more stable, she isn't well enough to go back to College yet, or shop, though she is at the she can wash her own hair stage with the latest improvements energy..my "gut" has thought the whole time that the depletion was a secondary, yet we and her specialists had thought we had ruled out all the primaries- but, maybe not.

After talking with Dr. Kendall about our suspicions about a Mast Cell Activation Disorder- we finally decided it was time to contact a few Mast Cell Specialists.

Let me say this was not easy. In the past 17 years we have been blown off at every turn trying to get help for Abby. Either they don't know, and don't want to admit it, or they simply weren't bright enough to see it. Or, their Medical Schools did not teach them to look for some of these things. Plenty of the specialists we saw over the years were very human and tried to be kind, but that doesn't mean they were able to help Abby. The one thing that still stings after all these years is when you think you have found the right Dr. and they give you the blow off.

I have to thank the folks that have read my blog and taken the time to send me an email because from what I described about Abby they either knew someone with a MCAD or had it themselves and saw their own symptoms repeated in Abby. I have to thank all those thinking Mom's on various chat boards, and groups who have encouraged us to look at Mast cell disorders, they too saw the same constellation of symptoms that matched more closely to MCAD then Mito.

One of the Mast Cell Drs. wrote back to us quickly. He agreed completely that much of what Abby is dealing with sounds more like MCAD then Mito. Now, does that mean that she doesn't have a depletion? NO. Does it mean she doesn't have a myopathy? NO. She had poor fetal movement in the womb, and clearly issues from birth, and those issues are not likely to be blamed on Mast. It does mean at least the depletion part could be secondary. It does mean that maybe all the different organs that are having problems could be more MAST then Depletion- and that would radically change her prognosis to a much brighter and potentially more treatable one.

Now comes testing for Mast and if that is the cause, figuring out the best way to treat it.

The bad about Mast Cell Activation Disorders is there are fewer specialists for MAST then Mito.. that there are a lot of different presentations, a few different types and within those types a lot of different prognosis's.. Some with MCAD are completely disabled, some respond well to medications, some have died..for some it may only affect the skin..many lead close to normal lives.. Huge variables. Still, something that can be treated and explains a lot of Abby's flares, food issues, etc would answer our lingering questions and allow us to move forward. Of course, somewhere deep down inside I wonder if this like mito will be more of a pandora's box that would be better left alone.

Derek is a little worried that Abby and I are going to be horribly disappointed if the testing proves it cannot be a MCAD.. but you know, I would rather experience Hope,joy, in full for now. I know if they rule it out we are going to be horribly disappointed- we so desperately want to find a reason for these issues that is treatable, that won't have the same rough prognosis that a Depletion does. The only reassurance we have with a depletion is likely Abby has her own special blend and that they are now finding lots of adults and other teens who's life span hasn't been affected by the depletion, just the quality.

In my heart I still see too many holes in this Mito diagnosis- My gut says the depletion is secondary and until it is proven primary I am going to run with it. The fact is, my gut has gotten Abby through the worst winter in her life-and the past 17 years.. we avoided the tube, we avoided the hospital, we listened to our gut and she is stable now. So gut instinct it is for today.

Let Operation Mast Cell begin!

Saturday, August 11, 2012

Quiche from Jamie at Circus of 6

Circus of 6 is a blog I read with coffee. Jamie writes about home schooling, family and cooking for a family with special dietary needs.

She posted this quiche(minus the dairy!) recipe the other day, and I could not believe I had never seen it before. She uses shredded potato for a crust! Immediately I thought about grating all sorts of root veggies into that crust.Then for Abby I could season ground chicken spicy or with sausage seasoning instead of bacon...truly endless possibilities. YUM! I asked and she said I was welcome to share it here too!
I love a good and versatile recipe!
Thank you Jamie! It is on the menu this week. Her post and pic's are below-


I made quiche!!

I took two ideas and made them one.

I used one friends idea of shredded potatoes as a crust and another friends idea of crust less quiche and made potato crust quiche.

I sprayed the pan with non-stick spray, layered the potato shreds, sprinkled on bacon, and then poured on a mix of 6 eggs with green onion.

Then I put it in the oven at 350 for 30 minutes and voila!


Friday, August 10, 2012

Gold Star Appointment.

We are wiped out! Up at 4am and not home till after midnight.

Abby had a terrific appointment with her Mito Specialist Dr. Kendall. Abby's improvements were very obvious. So much so, Abby has been graduated from being seen every 6 months, to 1 time a year!

We talked a lot about what we were doing to make these big gains and improvements- and we again marveled at how unique Mito can be. Each patient has their own user manual, and parents are indeed the best ones to translate that into practice.

It is nice to know our thinking outside the box is working for now, and our chickpea Nofu kind of lifestyle has paid.

A very long day with flight cancelations, and little hiccups. but Abby still prefers the fly in and fly out same day approach- She was beyond weary by the time we got home and I suspect she will be in bed for the weekend,maybe a week!

Thankfully, we all kind of enjoy the people watching at the airport.

The only down to the day, was a screaming toddler on the airplane. Not sure if it is as obvious to every other parent out there, but I KNOW the difference between a "my ears hurt" or "I am scared" or "I am frustrated" type of scream.. This child was simply spoiled rotten and with a parent who let this child scream and cause a miserable flight for 160 of us.. It was so bad, that a couple of passengers actually started entertaining the child since the parent was planning to just let her scream for 2 hours.. I tried to rationalize that maybe she had a developmental issue, but I sure did not see it, or maybe her much older Mom was sick with something or maybe deaf and couldn't handle the child but hands down it was a rotten spoiled kid with a parent who did not seem to care if her child drove the rest of us batty- as I sat there with teeth gritted, turning the volume up on my music and still the child's screams echoed through my spinal nerves I tried to at least rationalize that she had quite a voice and perhaps all this screaming would lead her to become a world famous rock singer(think Joplin!)or that at least she had nice strong lungs.. nope- after 2 hours the entire flight was seething- it was so bad that a few passengers hollered " Oh thank goodness!" when we were finally able to get away from the child!

I have decided it is a very good thing I only have 2 children, and that apparently mine were extremely easy- because I have noted a serious uptick in screaming, running, and unruly children out there...

There were lots of terrific kids at the airport which gave me hope that not all children are monsters and I am not completely intolerant! :-) I think for the next flight I need to invest in a better headset, I wonder if there is anything better then noise canceling?

So, whatever we are doing to help Abby, we keep doing it, we all agree for now, it is clearly helping Abby heal/stabilize. It gave Abby such a thrill to walk into her appointment yesterday! :-) She cannot do the airport without a chair yet, but heck healthy folks get wiped out running the airport! Walking into the appointment clearly looking and feeling so much better then in February, gave us all a thrill! I think my goofy happy grin will get us through the next 10 flares because I know now that what we are doing is working. :-)

Wednesday, August 8, 2012


For anyone trying to improve their health by addressing what they eat before hitting the Dr. office I figured I would share a few links.

Environmental Health Center- Dallas

American Nutrition Association

Introduction to Hormone Disrupting Chemicals

A Community for the Chemically Sensitive

US Environmental Protection Agency
kills me from a political standpoint to share their website, but they do have some great information on pollutants.

The Food Allergy and Anaphylaxis Network

Conditions and Cures LifeSource Vitamins
(not advertising for them, but their list of symptoms is terrific and shows how easy it is to incorrectly identify allergy,intolerance or whole other disease process.)

American Gastroenterological Society (lots of great information here, I always recommend a second opinion for GI issues- Abby's first GI was shocked she did not have a tube simply because of her diagnosis in combo with scary labs and weight loss, the second GI we saw was less worried about her neuro diagnosis and more common sense,(not looking for zebras first)and felt we had not explored all our options yet and was very supportive of us steering clear of interventions- you have to find the right fit.)

Leaky Gut, lots of links so I will just add a couple below,

What is Leaky Gut?

Leaky Gut Syndrome, Intestinal Permeability

Finally- When Abby was little she had some serious tactile defensiveness, and very poor facial muscle tone to the point she was very delayed even smiling. This made introducing foods or getting her to swallow a HUGE effort- we always thought she was just picky, or stubborn or sick- but we worked through it with the help of a team of therapists over a couple year period.

Picky Eaters

Child-Behavior Guide. Com

Monday, August 6, 2012

Cheesecake- Abby Style.

A dairy-free, nut- free, corn-free, gluten-free, soy-free Cheesecake.

I have used eggs since Abby does well with them, but I am wondering if an egg replacement would work? Might reduce the density and richness, but I bet it would still be delicious!

I used a 6 1/2 springform pan. You could either double the recipe for a 10-12 inch pan, or use an 8 inch but reduce cooking time.


You can use any crunchy safe cookie. I used gf nilla wafers for this one.
10-12 gf Nilla wafers. (I replaced the butter with palm shortening in this recipe) (I also replace the milk with rice milk)
1-2 Tablespoons TT coconut oil in liquid form (enough to get it to stick and press into crust)
3 Tablespoons granulated sugar Imperial is the brand we use.(you know we love sugar!)
1 Tablespoon rice protein powder (MLO brand tastes like graham cracker not necessary this brand is not considered corn free, but so far so good with Abby- but we do it for protein and flavor adjust oil to less if you skip the protein powder)


16 ounces Chickpea NoFu(I just cut what I thought looked like 2 blocks of 8oz cream cheese)(blog post Chickpea Nofu)

1 cup sweetened condensed coconut milk ( how to make Post) (Thai kitchens is our preferred.)

2 eggs
2 egg yolks

3/4 cup granulated sugar

3/4 cup coconut milk sour cream( remove the firm cream from a full fat can of coconut milk that has been chilled. Mix in 2-3(you want it sour) teaspoons of vinegar or lemon juice, chill for an hour and serve or use.)

1/4 cup fresh squeezed lemon juice(adds that cream cheese "tangy")

2 Tablespoons gf flour. (I just used sweet rice flour)

1/2 teaspoon salt(pink himalayan of course!)

Crush nilla wafers into a fine crumb,mix sugar with crumbs. Stir melted coconut oil into crumbs to create the crust. (It should be the consistency of damp sand.) Press into the bottom of a (greased) 9-inch springform pan and up the sides about an inch. Set aside.(option- you can Bake the crust at 375 degrees for about 5-7 minutes if you prefer a chewier crust)

In Ninja or food processor, (or stand mixer), blend chickpea nofu together with sugar and sweetened condensed coconut milk. Scrape down sides and mix again to create a smooth consistency. Turn machine back on and slowly add in the rest of listed ingredients one at a time. Scrape down sides of bowl and whip again to ensure a smooth filling. Pour into springform pan over crust.

Bake at 325 degrees in water bath for 1 hour 15 minutes or until it is barely set (it’ll jiggle a little when you shake the pan). Remove from oven and cool to room temperature-about 4 hours. Cover with plastic wrap and refrigerate until completely chilled. Before serving, unclip the springform pan and remove the sides so that just the bottom and cake remain. Cut and serve with whipped coconut cream. Or top with favorite fruit,berries or as we did with a sweet blueberry sauce.

Exercise and Nutrition, for some better then Medicine

Recently I have noticed an uptick in various Mito patients taking their diet and exercise more seriously, and their efforts are either met by encouragement or defensiveness in the Mito World.

On the UMDF facebook page a Mito patient has been posting her progress and improvement by adding an exercise program. First, when I read about a patient and exercise I automatically assume that the patient is sharing what is working for him/her and not implying that other patients are sick because they are not doing the same. We have been in the trenches long enough to know, that for one patient exercise can be something as simple as brushing their own hair, or as challenging as working out at the gym each day. Reading the post I noticed a lot of encouragement toward the patient for trying something to feel better. I also noted a few posts that were definitely angry/defensive and felt it was implied that they were sick because they did not take care of their bodies.

I have read a few blogs and facebook posts where mito patients have focused on what they are eating or their child with Mito is eating. Tons of variables in diet depending on the disease process and which organs are affected. I have also read with some curiosity that some GI's are recommending previously fed by tube children to be admitted to something called "feeding clinics." At first I was horrified by the idea of separating a toddler from their parents to teach them to eat again, but now after what we have been through I can see where a few select patients it could be very helpful. When the rest of the world and our government find things like Roundup to be safe, or a can of formula with a hundred ingredients that are mostly chemically treated to be safe and healthy, it is not easy for a patient to change how they see food. Introducing chickpea nofu, millet, coconut oil,blackstrap molasses, figs just would not have happened a few years back for Abby, but it took an openness and desperation to give it a go- if there was some perfect nutrition in a can where she was thriving, I promise you, I would fight like mad to keep her on it- safer,easier,more predictable. Like breast feeding vs bottle- when you breastfeed you have no idea how many ounces they got, what exactly was in your breast milk? But a can of formula is clearly labeled with it's content, the bottle is measured in onces- it is a bit of a leap of faith to breast feed if it is your first- you don't breath until you see they have gained weight and grown at the peds office checkup.

Since both nutrition and exercise are the two area's Abby and I have focused on I have followed both topics with interest.

Within the mast communities and allergy communities there are lots of Mito patients, and many have tackled diet and exercise with some level of success. Some like Abby have experienced healing and stabilization that they could not get using medications and feeding tubes. Some have shown no improvements.

When we withdrew from trying any further medical interventions when we felt they were making matters worse instead of better, I felt pretty alone. Abby and I have talked a lot about what works and what doesn't for her. We both are feeling very grateful that Abby wasn't diagnosed with mito as a baby or toddler.. I suspect that would have significantly changed our perspectives. For us, it was an advantage to problem solve all those years because we did not know about Mito.. I had no tools, and no understanding of what was wrong and the only thing I could do was control her environment,energy, and nutrition. We saw improvement,though it took years. I wonder if at age 1 or 2 if the Drs. had suggested a feeding tube if I would have done it? Likely- at that point I really did not question medicine or Drs or status quo. At the time we thought she was just outgrowing her "undefined congenital myopathy" which was expected, until recently I did not connect what we saw at puberty with what happened to her as a baby. Nor did I ever really connect any parallels between allergies and neuromuscular until recently. When Abby got so sick at puberty again, and then we found the depletion it took me awhile this time to tackle her health the way I did when she was a baby, because Drs.and medical data was more powerful in my mind then food or environment. It wasn't until Abby got sicker with each addition of supplements, with the addition of miralax and supplemental formula's- we were absolutely terrified that whatever is wrong with Abby was progressing, and fast. My gut told me the interventions were killing her- but it took awhile before I trusted that. Though my efforts when she was a toddler were effective, now we were dealing with Mito and not Abby- or were we? I figured cleaning out the allergens might at least make her more comfortable and reduce the energy needs of her body.

I have had many days over the past 7 months where I truly thought I had lost my mind to withdraw and go back to the ABC's with Abby. Then I have had weeks where the improvements were so clearly massive I have been giddy with the success. We as a family have benefited beyond Abby's health improvements. We are all healthier. I feel like we have been empowered to take care of ourselves and not depend on Drs. for all the answers. I have learned that "fuel" is important. Through these changes I have found hundreds of patients who have similar issues as Abby, and they too have found some level of success by focusing on the minute details of nutrition.

Day to day I still wonder if this is all placebo- the mind is very powerful thing. We have lab work that proves she has improved but, is it just mind over matter? Or is it really a perfect fuel scenario?

At the end of the day, we are extremely lucky. Many children with Mito are terribly sick and need every single medical intervention to just stay alive.

What works for Abby isn't going to work for those children, but I cannot help but wonder, are there more "Abby's" out there who would benefit from tossing the twinkies and eating real fuel vs commercial chemical fuel? Though I recognize no two mito patients are alike I have been finding more patients who are benefiting from extreme diligence to their energy,diet and nutrition. I wonder if as Mito diagnostics improve, they are finding more "mildly" affected patients- and these patients have a better chance at seeing improvements...or are some or maybe many mildly or more affected mito patients have Mito secondary to another disease process? I suspect it will be another 10 years until we have answers to a lot of these questions. I hope they develop technology to create very individualized treatment plans- to have targeted treatment for each patient and not just mutation would be ideal for Abby.

My big question is, will this last for Abby? Or will another issue come up eventually that I cannot help her with by tweaking her nutrition,energy, and environment? If I base an educated guess on the current medical literature, this isn't going to work forever. Yet, if I base my question on Abby's history, she stands a good chance at being stable for a long time.

Last week Abby woke up in full flare mode.. edema,irritated, insomnia,painful muscle and joints,dysautonomia, GI issues- For more then a moment I felt panic. We traced back her diet and found she had been corn contaminated, had eaten too much protein, and suddenly developed a sensitivity to salt,where before she could not get enough. It has taken a week, but we tweaked and analyzed the data and yesterday saw good improvements. Still a bit off today, and so very tired but sleeping well and the GI is settled and her mind is clear again. So this flare we figured out again, but how many more are coming our way? How long can we live cooking everything from scratch, changing gears at a drop of a pin, living this extremely different from the rest of the world is not easy. I think though, as long as I can see that she is stable or showing improvement, or that we can tweak her out of a flare, we can do it forever. I still haven't figured out how to get all the nutrition into her that she needs, she needs more protein in a bad way.. for now we are waiting and trying to be patient that she is still healing. Placebo or physical need? I remind myself daily that for now it doesn't matter.

Saturday, August 4, 2012

Chickpea NoFu!

I bet you are really wondering if you really want to know what inspired this new venture! :-)

It started with the Ninja and pantry clean out. I had bought a ton of dried chickpea's a few months back because Abby needs protein and other nutrition that chickpea's are full of.. unfortunately, she hasn't done well with the chickpea's so I kind of forgot about them. Last week I found them again. Since our initial trial with beans we have figured out that Abby cannot do red or black beans. She can do a few navy beans. So I wasn't quite ready to toss the chickpea's, they keep forever and just maybe sooner or later Abby will be able to digest them.

In the meantime I had ordered the Ninja. Which I have thrown everything but the kitchen sink into just to see what it can do. I was reading a blog about Ninja's and she posted that she could turn dried chickpea's into flour.. well humm- I had chickpea's and I am running out of idea's to challenge the Ninja with- so what the heck? I would give it a try.

The Ninja did a pretty good job! I sifted out the coarsest bits and ran the finer stuff through again. It made a bean flour that would be terrific to add to a gluten free bread, but it is not super fine.

The flour sat on the counter all day yesterday. I figured next time I made her bread I could throw some in, or some recipe would pop up that would call for some..then I remember seeing a post month ago on The Vegan Mommy Chef Blog. She had created a cheesecake that was dairy free,soy free,corn free,nut free and seed free! Black Magic right? But she had used something called "Nofu" she made out of bean flour. BINGO! I did a little more research to make sure it is as easy as it seemed and ended up using this recipe on the Living while Living Without blog.

Last night I mixed the flour with water a touch of salt no turmeric(Abby is allergic) and left it on the counter for the night(that easy!)

This morning I poured the bean whey into the pot and started stirring- the full 15 minutes at a low boil. Then I poured the bean "sludge" in and stirred- and that was some work! It gets thick, but you have to keep whisking for 5 minutes. Reminded me of making cream of wheat and realizing you might not have enough water in it?

Poured it into a greased loaf pan, covered and threw it in the fridge-

Here it is;

First I gotta say, I am no fan of tofu- never have been. Soy has a certain flavor I just could never get past. This has a little sweetness and nuttiness. If Abby wasn't allergic to everything, odds are I would probably pass because I could. But, if you are going to cook with "nofu" this isn't bad.

Unfortunately, my not very fine flour did not smooth out in all the soaking and boiling- so there is some "texture" to it.. I was hoping for something smooth like silken tofu, but next time, right?

Now what to make with it? Well of course I have to try that Black Magic Cheese cake! LOl Thankfully, Abby can have eggs.. I also happened to make some sweetened condensed coconut milk this morning- and just tried a new recipe for coconut milk sour cream! Yep- cheesecake tonight! I think if I puree the Nofu and add some coconut flakes then I can call it a lemon/coconut (lemon offers some of the tang this lacks)cheesecake.. might even make it in the pressure cooker.. Oh, and I just remembered I made arrowroot cookies(yes, like the toddler ones)last week and have some screaming to be made into a cookie crust- if it turns out- I will share! LOL

UPDATE: Made the cheesecake-Dairy-free,soy-free,corn-free,nut-free,gluten-free.. Will post the recipe once I tweak it a bit to make it a bit firmer- definitely has that cheesecake flavor and the chickpea nofu smoothed out completely! DELICIOUS as it looks!

Wednesday, August 1, 2012

Extract or Hooch?

Going corn free was a challenge and I have found it truly shocking to find out how many of the products we use weekly or daily have had to be replaced because they are contaminated with corn.

Vanilla extract- sounds innocent, I mean how could that be corn contaminated?

They use grain alcohol and all are CORN CONTAMINATED!

We have tried vanilla sugar which is throwing a few beans into a tub of granulated sugar which is okay, but hard to get intensity.

I have been browsing the net and noticed some companies are making either a "vanilla paste" which I have strong doubts would be clean, and one that has potential is a vanilla powder. The claim it is 100 pure vanilla bean, but despite my requests for information about their "process" and whether the beans come into contact with any corn I have yet to hear back.

So, I thought just make my own.

Potato vodka 80 percent or better. Vanilla beans. That is it, and patience. From what I have read it can take up to 3 months to come up to full strength. It is recommended that you keep the jars in the dark and give them a shake a couple times a week.

Way too easy for me! I had a big bottle of potato vodka and lots of empty mason jars. Sara asked if we could make almond. I thought coffee... Derek thought lemon... and by the time we hit that we thought why not, lets try peach too!

I read a few blogs and decided to stick to a 1 to 1 ratio- some where less but I am always an advocate of more is better! I cut the beans lengthwise to open them and added 9 per pint which might be overkill but probably not.

I expect the vanilla will turn out fine- the rest of them, who the heck knows? If it isn't a good extract or tincture, surely it will be some mighty fine Hooch!

If it turns out, standby, you might be getting some for Christmas! LOl

Budgeting with Mito


Like many Mito families and most American families right now, - finances are always a tug a war around here!

The other night I was watching the Houston news. They were talking about the Janitor's union being on strike. I don't know enough about their Union to have an opinion about why they are striking, but one of the Janitor's adult daughters was giving an interview. What caught my attention was how she described living on Janitor's income- she did not complain about time, nor about educational opportunities, nor about medical care or even food- she was whining about how terrible it is to be a school child and not have high end kicks like "all" the other kids- Yep- any sympathy I had for her plight flooded quickly down the tube. Derek and I prioritized family and education above everything else. I grew up in a not affluent family, but very comfortable and any of my family that were affluent got that way through education,saving and hard work. Derek grew up in a lower middle class family- Our families failed us at various turns, but one thing they always focused on, was to get an education! When did we as American's quit teaching our poor our middleclass even, that the free education they are offered has far more value then a pair of designer shoes and an Iphone? Okay- so got that rant out of the way, and here are some of our tricks to living on a budget.

When our oldest was born my husband and I decided that 1 fulltime parent was necessary. We were both products of divorced parents and it just felt right to know 1 parent was the fulltime caregiver. Turned out to be me! :-)

So, before Mito even came into our lives we learned to budget. When only one parent works you make the choice that you are not going to have everything that a dual income family has, and that has been fine with us. Over the years sometimes we have had to sell the second car, or not have cable or cellphones, but the option would have been me working and losing that "anchor" of 1 parent at home. I have been fortunate that my girls are not the types that need the latest and greatest and appreciate saving up for special items- they enjoy the creative outlet of being thrifty. Sara remembers the year we lived in an apartment without a washer and dryer- often I had to chose between paying for the washer or dryer or food. Sara and I have great memories of pretending our dirty clothes in the tub were grapes and we were making wine! LOl Or the year I bought yards of old drapes and made sundresses for two years out of them! :-) She and Abby delight in those memories-it was because I made it fun and creative and we spent time together.

Abby's diagnostics inhaled any dollars around here! We were just recovering from a job loss in Seattle and I don't remember having to stretch the dollars that far in probably 20 years! LOl But we did it! Now that our budget is higher then ever, I have hung onto my thrifty ways, partially because I worry that I need that money in reserve to prevent hitting bottom if Abby tanks in the future, and partially, because I find being cheap a challenge and joyful! Not to mention, we aren't going to be young forever! Time to get very serious about retirement. Selling the second car to pay to travel to Drs. during the diagnostic period was well worth it, as we say around here, it is what it is! Plus, it feels good to do it ourselves. We are just stubborn enough that we may haggle for a discount but we haven't had to accept charity. We were very lucky over the years to be apart of a group of friends who always shared with us when they could, and it feels terrific to be able to share back again! I will say having a second car again has been simply amazing! I clearly appreciate the little things more, and the big things like a second car is equivalent to winning the lottery to us! :-)

Our rules: Pay cash. Save your money and don't use credit. Believe me, I know how painful that is.. but if you can everything else will seem easy.

Buy used- new cars lose a ton of value the minute you buy it. Wood furniture can be refinished, add new hardware, a fresh coat of paint and you saved at least 50 percent plus odds are a better quality piece then new today.

No eating out- Abby cannot as there isn't anywhere safe for her, but skipping starbucks or a soda at a drive thru adds up! Put that few dollars away and in a matter of weeks you would be shocked how much you have saved! Not to mention you have just probably lost a pound or two avoiding empty calories!

NEED vs WANT- Of course I look with envy at the ladies with the new Coach purse every other month, or the latest hair color- but at the end of the day, they are wants, not needs. We do allow ourselves wants now and then but really try to think about whether we just want it because the Jone's have it, or because we really want it and will use it. With our income increased significantly this year I have a lot more buying power. I have been wanting a Vitamix- what woman doesn't? however, for as much cooking as I do I just thought 500 bucks for a blender outrageous.. I did need a blender however to be able to make a better variety of foods for Abby but it was still more a want- I saw the new Ninja with 1100 watts- that was almost the same power as a vitamix- it had all the bells and whistles and was only 170.00 bucks- plus a terrific door to door warranty and simple return if it turned out to be a lemon- so I satisfied my need and want and saved ourselves a lot of money by not buying into brand name envy! FYI- I love that Ninja! I use it nearly 3 times a week at least! Years ago I had a kitchen Aid which I ended up selling to offset bills during the tough years,- I mourned the loss of that mixer- but it was the "status" that I mourned not it's use. It took up a ton of counter space and I found the accessory pieces to be a bit of a pain. I could buy another one now, but find my handmixer that fits easily in the cabinet works terrific for everything I need it for- so not buying a kitchen Aid. Clearly a case of Want vs Need. Sometimes I can satisfy a WANT through my second hand addiction. Abby doesn't have to eat ice cream, but if she is going to it has to be homemade because of all her restrictions. I happened across a compressor style ice cream maker that you don't have to mess with a freezer bowl for 30 bucks brand new in the box still!! Those easily cost up to 300 brand new- a bit of a chance to buy a used appliance but 30 bucks was worth it- that machine has more then gotten it's money worth and other then struggling to find a place to store it has been a joyful and cheap want!

Clothes- I admit I am addicted- I am a "quality snob". Here is the deal though, if the walmart item is quality and the best bang for the buck that is what I would buy- I am not a brand snob. What I have found though is that usually Walmart brands are not quality and cost more then a quality item sold used- I am a consignment and thrift queen for clothes. Last week I got the cutest pair of Theory new seersucker capri's for 3 bucks- a pair of capri's on their clearance page online run anywhere from 90 to 170.00 bucks! Cost me far less then Walmart, very high quality and the fit is terrific!. I do buy new on occasion, but I have the 20 dollar rule- if I cannot get it for under 20 bucks new I won't buy it. I have gotten some amazing deals just by being patient. A new pair of Lucky brand jeans- for 19. An adorable Loft sweater for 8.00... It can be done. I also only take with me the amount of cash I am willing to spend. If I have a shopping day, I will tuck 60.00 in my wallet. I usually come home with cash and plenty of needs and wants. I also do not buy snacks or drinks while shopping,my family knows to pack a drink and snack.

Coupons- not a huge coupon fan. At least for food. Most of the products that have coupons are full of chemicals or ingredients Abby cannot eat- or I find another brand that is actually cheaper or the store brand- so not worth my time. Some coupons are golden though. If I am working on a project a 50 percent of coupon at Hobby Lobby will help offset the cost the bottle of paint I "want". We only use Scotts Toilet Paper as it is one of the few that is corn-free, when I find those coupon's I am overjoyed. But, buying things just because you have a coupon can lead to a lot of wasted money.

Lastly- Share and Swap. Huge fan of giving. If I have more tomatoes then we can eat I can always find folks glad to take them off my hands. When I clean out the cabinets and find excess school supplies someone on craigslist or freecycle is thrilled to come pick them up. If I canned too much applebutter? A friend might like a jar or they will be great in a Christmas package. I know first hand what it is like to struggle to pay the power bill or buy paper products- If I know someone that needs a hand because they aren't able to have the BASICS their NEED comes before my WANT. I try very hard to share locally. Though I like the idea of feeding a child in Africa for a year with 20 bucks, I would much rather feed someone in my own community for 40.

Mito supplements, home schooling, medical supplies do add up, but we all have something that can be trimmed from the budget. It stinks to get up at 5am and wake up sleepy kids to drop the hubby at work, but it can be done. We lived for years without a cellphone- until home phones are no longer available, you can live without one. Nike shoes are great, but betcha you can find last seasons for half the price. Used Loft clothes for 5 bucks last 10 times as long as a 20.00 Walmart shirt and fits better too!

We have changed our lifestyle, goals, to fit our children's needs, that is what parents do, we put our children first, they did not ask to be born and they are our most valued part of our lives. Most times it is very easy.- Mito is no different then if your child needs early college, or if you have a gifted cheerleader- those activities are expensive like having Mito is, and like Mito they are simply part of the individual needs of your child that you are responsible for because they are yours. Despite the restrictions Mito puts on many of our lives there are benefits. We prioritize our family. We prioritize our home(since we are home so much!)we appreciate being creative. On a bad day Abby has developed some keen management skills and from a couch or bed and is willing to share what she see's and often her quiet insights help complete a project. We have stopped envying the Jone's. We have learned to appreciate just feeling good. As they say we stop and smell the roses.

As I have read blogs from other Mito families I see that appreciation for the true things in life bloom under the stress of Mito. Despite the cruelty of this disease or any chronic illness there are gifts. We just need to take our blinders off(aka the Jone's) and see them.
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