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, March 29, 2014

Grinding Your Own Grains and Beans with the WonderMill


Over the past couple years we have slowly but surely eliminated many sources of corn and other allergen contamination.


We have had reasonably good luck hunting down safe flours for Abby. Unfortunately, it often entails driving all over Houston, or ordering from a zillion different stores online.


I do struggle at times to find the "time" to do all the cooking for everyone from scratch and all the shopping to hunt and gather safe ingredients really sucks up a lot of my "free time."


After reading about grain mills for the past year, I did it. I bought one.


The WonderMill.


There were a number of reasons I opted for this particular mill over others on the market.

1) Power. based on various comparisons the WonderMill is superior for longevity. While the competitors burnt out, the WonderMill continued to grind away.

2) Mess- The WonderMill has a completely contained container that catches the flour- no dust, no mess.

3) It claims to be the quietist. I won't lie, I about had a heart attack when I turned it on, it may be quieter then the others but it is still very loud! So, if it is the quietist one, I am very glad I bought it.

4) It grinds about anything. It has a few accessory pieces that allow you to grind teff(super tiny!)and one for chickpeas(large!) with ease.


5)Speed. This machine eats grain at shocking speeds! I have to admit we probably ground a lot more rice then we needed the first day as we could not but help but watch in amazement as the rice disappeared before our eye's and turned into a fine wonderful flour.

6) Three options, Coarse, Bread, and pastry. The bread setting is recommended for most, but I found the pastry option made the rice flour more similar to the asian market rice flour I love.

7) So easy to operate. It snaps together you dump the grain in and that is it. Easy to wipe out. Had very good ratings for ease of use.


There are down falls for some. Not for nuts and most seeds- anything "oily" should not be ground. This is fine for us as Abby reacts badly to those so we don't keep them in our home.

It is big. So not sure where to store it.


I am frugal, so this was not any easy purchase. There were other brands that were cheaper, but hands down since we "need" this I felt it was a good investment.



Friday, March 28, 2014

Teff and Tapioca Crumble(rice-free, potato-free, corn-free, soy-free, dairy-free, nut-free, gluten-free)



Some families that are corn allergic are so sensitive they are having a very hard time finding safe foods. Gluten free flours are very hard to find that are safe for the corn allergic and the more so for the very corn allergic.


One that has been has been safe for quite a few is Teff from The Teff Company at Teffco.com


Most of my recipes I use my "all purpose gluten free flour" which also contains rice and potato. Rice and Potato are growing allergy concerns for many families.


Lately I have been curious to see which flours can stand alone for what type of dishes. This was a huge success. Honestly, Abby and I decided in the future we may only make our fruit crumbles/crisps with this blend. This was unbelievably rich,nutty almost caramel flavored and a rich full flavor. The pear/ginger fruit with the crumble was a perfect combo of flavors. You certainly will have no idea that this is free of about everything. :-)

Preheat Oven 350

Crumble Topping:

3/4 cup Teff flour (I use their Ivory flour)

1/4 cup tapioca starch

1/2 cup packed brown sugar(I use domino's, coconut sugar would probably work well too.)

1/2 to 3/4 teaspoon salt(we use pink and tend to like a bit more salt in ours)

1/2 cup Tropical Traditions coconut oil.


In bowl combine everything but the coconut oil. Cut the coconut oil into the dried ingredients. At this point I often use my hands to squeeze and crumble the mix together.

I sprinkle on top of my prepared fruit. Bake at 350 for 25-30 minutes.

Fruit Filling: You can use any type of fruit. I find cooking the fruit or berries most of the way on the stove top, sweetening and thickening as needed before finishing with crumble topping is easier.

Pear Filling:

4 pears peeled and cored, sliced thickly
1/4 cup granulated sugar
1 teaspoon ginger(I ground up some of my endless stash of candied ginger I make and dehydrate)
a dash of cloves
a dash of allspice
(or if cinnamon is safe feel free)

In sauce pan combine ingredients. Cook on low. Pay attention closely and gently stir until a sauce has formed. I allow to cook about 15 minutes until the pears start to soften. I don't normally thicken either pears or apples for a quick crumble/crisp. Berries or very juicy fruit benefits from thickening with a bit of tapioca before baking with the crumble topping.

Pour into greased pan and top with crumb and bake.

Thursday, March 27, 2014

Foster Children:Statistically do worse in Foster Care then in the Dysfunctional Home.

Higher precent of school drop outs.

Higher percent of homelessness.

Higher percent of teen pregnancy.

Higher percent will become felons.


CPS knows that Foster Care means a child is far less likely to be successful. Yet, they continue to remove an alarming number of children, and often for no reason(at least no proof of "abuse") as in Justina's case.


Why?

Do Drs.(the number 1 reporting population)realize they are not improving a child's life by placing them in Foster care?

Do Drs. know they are actually likely to make success even further from reach for these children?

Yet, they continue to pick up the phone.


I have read reports of Hospitals(have not confirmed facts but,)"flagging" medical records to track patients for potential abuse. If these flags were burns, breaks, and bruises I could understand but they go well beyond that.

Homeschool? FLAGGED

Eat Organic? FLAGGED

Move a lot? FLAGGED


How many flags does it take to make that call?


Now as cases like Justina's come to attention we find Drs. call CPS when they don't like another Drs. diagnosis.

They blame the patient. They blame the family. How is that we are supposed to know which Dr.(equally certified,equally specialized, with equally good reputations,but very different opinions) is right? If we don't follow a Drs recommendation for healthcare we are neglecting our child. If we do follow our Drs. advice for healthcare we are providing too much care.

There is no report of abuse against the family. They have yet to prove that the Mito diagnosis was wrong. Or that the treatments received were unnecessary. Not to mention their new diagnosis and "treatment" have caused a child to go from happy,ice skating, and stable to wheelchair bound, isolated, alienated, scared. They have caused extreme harm to a child who will age out of the system a broken human. What exactly do they think they can provide her for a future if she can live through this torture? Nothing.

Child Protective Services could be doing an immense amount of good. We need them. There are children being starved to death, sexually abused, beaten to death all over the Country, but they opted to use very limited services to provide the worst possible outcome for a child. Any sane, well educated and helpful agency would have mediated Justina's care between the two very well respected Hospitals and Drs. Instead they picked sides and have allowed the health and wellbeing of not just Justina but her family as well to be destroyed.

When we go to vote in the next election, make sure who you vote to elect will defend the rights of our children, of our families. This is far from just a Mitochondrial Disease issue. We need to stop it.

We all have different opinions of what is right or wrong, we all have the right to voice those opinions. We do not have the right to interfere with the Dr. /patient relationship. We don't have the right to tell families what to eat and when. We just don't.

I still have faith that Justina can get home. She nor her family will ever be the same. Many families with Mitochondrial Disease are no longer going to trust the judgement of their Drs. Parents in general fear CPS. CPS should be a welcomed agency to make the lives of children and families better, not to damn them to miserable statistics of human suffering.

LINKS to Data on Foster Care Statistics: National Coalition for Child Protection Reform

Child Protection and Child Outcomes; Measuring the Effects of Foster Care by Joseph J Doyle Jr.

What to do with the Coconut Flakes after you make your Milk.

I hate to waste food. I REALLY hate to waste expensive food.

Tropical Tradition coconut so far is the "safest" corn free option for making Abby's coconut milk.


I make milk for her with the flakes but after squeezing all the milk out I am left with a mound of "used" coconut flakes.



A few things I have used them for:


1) I dry them out and toast them. They don't have a ton of coconut flavor left but toasting brings out the flavor and the toasted coconut can be added to savory or sweet dishes for that great "crunch". Top a casserole, mix into caramel, sprinkle on ice cream. Endless uses.

2) Candy it.

This of course is our favorite option and easier then you think.

Drain all the "milk" out of your flakes. Place the flakes in a pot with an equal amount of sugar. Heat to 250(stir until it gets soupy and at a simmer, no higher then medium heat). Remove from heat and add a dash or so of salt and some homemade vanilla. Pour on greased cookie sheet or dehydrator sheets. I spray my hands with a bit of grapeseed oil and carefully(it is HOT!) pat down the coconut till it is well packed.


Allow to cool. If it is too sticky simply throw it in the dehydrator(low temp) to remove some of the moisture. 4-6 hours usually will dry it out enough to work with it.


I tend to grease my hands before trying to shape the stuff. It is sticky candy. I roll bits into balls and then roll in crushed cookie crumbs. Or I smash a piece of the coconut candy between two cookies. Or, I shape like a mounds bar, place a couple roasted chickpea's on top and dip into a coconut oil based carob chocolate. Place in the fridge.


So, don't throw out those leftover flakes! Dry them, toast them or candy them. No wasting expensive and clean food.

Coconut Candy from "used" coconut flakes:

1 cup of damp flakes leftover from making coconut milk
1 cup granuated sugar(domino's)
1 teaspoon homemade vanilla extract
1/4 teaspoon pink himalayan salt

Place sugar and coconut flakes in pot. Bring to a simmer while stirring. Once it is soupy and simmering, leave it alone. No higher then medium heat. Allow temperature to come to 250 degrees.(candy thermometer)remove from heat. mix in salt and vanilla.

On either a greased cookie sheet, or dehydrator sheet spoon coconut candy. With greased hands(HOT HOT!) carefully firmly pat until compressed. I squared mine up to make it easier for cutting.

Allow to cool.

If still too sticky to shape once cool, place in dehydrator for 4-6 hours.

Using greased hands(I use grapeseed oil) I shaped into mounds. I placed 2 roasted chickpeas firmly into the top of each piece.

Carob Coating:

1 cup coconut oil(Tropical Traditions)
1/2 cup corn-free powdered sugar(sifted)
1/2 cup carob powder or cocoa powder.(SIfted)
2 teaspoons homemade vanilla(just 1 if using cocoa, carob needs extra vanilla to make the flavor sing)
dash of salt.

In double boiler combine oil,sugar and carob(or cocoa)stirring continuously until smooth and melted. Remove from heat and add salt and vanilla.

Dip fruit, coconut or cookies. Place on rack that is on a plate or cookie sheet to catch dripping. Place in fridge. Coconut oil warms quickly so these are best kept in the fridge.

TIP:sometimes I will end up with my carob coating full of lumps or grits.. probably because my coconut oil was too hot.. but anyway don't throw it out! You can push it through a fine mesh to remove the lumps. Reheat as needed. Leftover carob coating keeps well in the fridge for a couple weeks. Simply place back in double boiler to gently melt it again.

Tuesday, March 25, 2014

Justina: Our Government Abusing Children

Justina's health continues to rapidly decline. Still refusal to take her to her Mitochondrial Specialist.


The pictures even from 3 weeks ago indicate a terribly sick child.


Today, if a parent doesn't seatbelt their child at age 5, or a parent has an obese child, or a parent spanks their child, or a parent seeks alternative care, or a parent home schools the government can remove your child from your home as these are "flags" for child abuse in the eyes of our government.



Justina has been locked up, because she is sick. She has been kept locked up with less rights then any death row prisoner to hide the mistakes that might just take her life. Not receiving life dependent medical care, not allowed to talk to friends or family, clearly not being cared for.. and CPS and BCH call it "PROGRESS."



Every parent in America should be TERRIFIED. I don't care if you are best friends with your Mito Specialist, you aren't protected you are NOT safe.


If you don't have one of the few, very few absolute gene mutations associated with Mito- you apparently do not have Mito. According to some Drs is all in your head.


Today is yet another day where a decision on Justina's life will be made. Will the Judge give her the death sentence that being left in CPS care could possibly cause or will he return her to her family and capable Drs. to try to save her life.


This will get worse. As Obamacare kicks in further, as UN treaties take effect.. the very few rights as a parent we have left are slipping away.

You might wake up one day with your child ripped away and our government officials "abusing" them too. If I treated my children the way that Justina has been treated by our government the past 14 months I would deserve to be in jail.

Saying a prayer for Justina today. Say a prayer for the multiple families that face this type of abuse every week in America.

For the last few years I have mourned that I will likely never get to be a Grandparent. Today I am relieved, I would not want to bring a child into the world today.


Sunday, March 23, 2014

Sorghum Cookies/Shortcake- 2 for 1! (Rice Free, gluten free, soy free, dairy free, gum free, nut and seed free)


I have been curious about what would happen if..... I mix this with that.. or if I left out this or that.. would it taste good? Would it hold together? I have had many flops trying different combo's but this one worked. Two things I did differently. 1 you will notice no oil or shortening! I used coconut concentrate(manna) from Tropical Traditions to replace the fat. On one hand it worked. On another hand the cookies are a little dry but cake like at the same time. If you mixed a cake,biscuit,scone and cookie together and over baked it a bit :-) . This however was a lot easier for Abby to digest. Filled with 7 minute icing(egg white, sugar on double boiler then whipped with a bit of salt and vanilla) they weren't bad at all. I prefer a moist,chewy cookie, but Abby really liked them. They were quite light too which made them more interesting. It felt like they weighted only half of what they should.. interesting. The second thing I did differently was I did not use my typical all purpose gf flour blend. I used sorghum,potato starch and chickpea. I almost tried using tapioca instead of potato starch, but played it safe this round. Maybe next time I will skip the potato starch and try tapioca starch instead.

After sampling a cookie I decided that drier texture would be perfect for a shortcake. I used half the dough and patted into a large round,cut into wedges, reduced the heat to 350 and baked it for 30, and presto! It really was better for shortcake I thought.

After I was done filling the cookies I had a lot of the 7 minute icing left. So I piped it onto a parchment lined cookie sheet, turned the oven on 225 and let them bake for an hour. So, one recipe and I ended up with 3 desserts- not bad! I forgot to turn the flash on to take the picture and hours later by the time I uploaded my pic's there wasn't enough left to take another picture.

Cookies/Shortcake Dough

1 1/3 cups sorghum flour
2/3 cup potato starch
1/2 cup chickpea flour
1 1/2 teaspoon baking powder(homemade)
1/4 teaspoon salt(we use pink himalayan)
2/3 cup coconut manna(for moister cookie, use either 2/3 cup butter or 2/3 cup palm shortening instead)
3/4 cup sugar
1 teaspoon vanilla(homemade)
1 egg
4 teaspoons coconut milk(lite or homemade, we use Tropical Tradition flakes to make ours corn-free)


For Cookies: Preheat oven to 375

Whisk flours, potato starch, baking powder and salt together, set aside. Thoroughly cream coconut manna(concentrate), sugar and vanilla. Add egg, beat till light and fluffy, stir in milk, blend in dry ingredients. Chill about 1 hour. Preheat oven to 375 degrees. Roll dough into balls, roll in sugar(or not) and place on ungreased cookie sheet that is lined with parchment paper. Bake 9-11 minutes. (if it has chickpea flour, make sure they are well baked! Raw bean flour tastes yucky!)

For Shortcake: Oven at 350

Make dough as above. I used half for cookies, half for the shortcake. Roll into large ball. Place on ungreased cookie sheet(I line with parchment) pat it down so it is about 2 inches tall. Cut into wedges. Sprinkle with sugar. Bake for 30-35 minutes.(again, better overcooked then under cooked when using any bean flour- raw bean flour is not tasty!)

Saturday, March 22, 2014

72 hours- failed

The Rash is back and she felt just terrible last night. Laying on the couch she looked like she has been run over by a semi truck. UGH.


Kidneys, muscle,joint and overwhelming fatigue/weakness, just tuckered out. The heart racing and weird drops in heart rate weren't as bad last night though.


So, either "corn" which is in the ingredients(derived from corn ingredients) of both brands she has tried, or the Protein itself. I say Corn.


I cannot even explain exactly how badly corn can damage those allergic or reactive or intolerant to it- horrid stuff.


For now it doesn't matter- ALL of the IVIg and SubQ have corn in them and of course protein- so doesn't matter which is the guilty party, she cannot tolerate it. 72 hours and more of feeling scary bad is not okay, no way she could tolerate this long enough for the treatment to work, her body would tucker out way before her willpower.


On one hand, we are very glad we tried it this final time with a different brand, it would have always bothered us if we did not fully explore her options.


On the other hand, I hate, hate, hate to see her so sick because of a treatment. So far, every single attempt at any med,vitamin,supplement Abby's body just seems to react even more violently. We cannot "assume" that there isn't 1 treatment out there that might help her, so each time we try something new we know that statistically this is what we will get, but we are always hopeful we will find the 1 treatment her body will take to like a duck to water.


If this goes anything like last time, she will go back and forth between feeling like she is dying and not feeling too bad for the next few days and the stuff works itself through her body.

A week or so and she should be better.

Until then, rest, fluids, safe easy foods..

Then we regroup and decide which direction to take next. We know there is something out there that will help, just gotta find it.

Friday, March 21, 2014

Favorite Gluten Free Pie Crust-(dairy free, soy free, corn free too)



Over the last couple of years I have tried quite a few pie crusts. Often with horrific results! Some so hard it broke our teeth, some so soft and crumbly I could barely get a bottom crust into a pie pan and usually only by pressing it in, let alone try to top a pie.


This is my "current" favorite pie crust recipe. Maybe I will find a new tweak I like better in the future, but for now? This one is great.

All Purpose Gluten Free Pie Crust: (Single crust, see notes below to double.)

1 1/4 cups Gluten-Free All-Purpose Flour
2 teaspoons sugar(you can reduce this, or remove for a savory pie)
1/2 teaspoon guar gum(or ground chia, or psyllium husk powder)
1/2 teaspoon salt(I use pink himalayan)
6 tablespoons cold Palm Shortening(Tropical Traditions or Spectrum)
1 large egg
1 1/2 teaspoons Braggs apple cider vinegar(the only recognized corn-free vinegar)
1-3 Tablespoons COLD water


Combine all dry ingredients.


Cut in cold shortening into dry ingredients.

Add egg, vinegar, and start with 1 tablespoon cold water. If you cannot get it to form into a ball add 1 additional tablespoon of water at a time until it comes together.


Cover tightly in plastic wrap(saran) or in a large Ziplock brand(one of the only corn-free bags,they use a tiny dusting of potato starch instead of corn to keep the bags from sticking). Place in freezer for aprox 15-30 minutes. You want it cold, not a rock!

Roll out between 2 sheets of parchment paper.

NOTES:
1) This recipe is for a single crust. In order to double you don't need 12 Tablespoons of shortening. I used 8 and had a tender crust that was easy to work with and delicious. This could depend on the flour blend you use. You may need more or not.

2) I suspect other flour blends would work well with this recipe.

3)
If you double the recipe for a double crust, don't need to double the vinegar. I used a little bit more then 2 teaspoons and that was plenty.

4) You will smell the "vinegar" when it is baking. That is normal. When fully cooked you will not taste it.

5)
For fruit pies I find using a metal pie pan works best. I start at a higher temperature(425) for the first 20 minutes and then reduce to 350 for the rest of baking time. This encourages the crust on the bottom to cook properly.

6) Pie Bird- I found mine at Ross for 3.00. They are also known as; Pie vent, pie whistle, pie chimney. They allow the steam to escape(like cutting slits into the top crust does). I was impressed with the top crust using the pie bird. Plus they are neat to see sticking out of your pie. Amazon has pie birds on their webpage. Once you have put in the bottom crust go ahead and center your pie bird, carefully add the filling around your pie bird. I had no problem placing the top crust over the pie bird. By the time I had peeled off the parchment it was resting over the pie bird and I just had to press down to get the pie bird to come through. Seal the crust around the pie bird. Oh, and wipe off the pie bird that is showing above the top crust. I left bits of crust on mine and it wasn't pretty. Before I showed Abby the pie I had to pick the browned crust off the pie birds face.

7) Crust cutouts. I seem to always have leftover raw pie crust. I gather it up and roll it out between the parchment. I use cookie cutters to cut fun shapes. You can place these right on your pie before baking. Or, you can bake them separately for "crackers.".


8) Gluten free pie crusts tend to not brown well. Nothing worse then a ghostly white crust. To help a gluten free pie crust "brown" you brush with milk and sprinkle with granulated sugar. I used Abby's coconut yogurt that I thinned to more of a milk thickness and brushed it on the crust and sprinkled with sugar, worked great! Check pie for browning halfway through, it can actually brown too much! I simply throw a piece of tinfoil over the top and let it rest gently on it for the rest of the baking time.

9) You can make the pie crust dough a week in advance. Just make sure you tightly wrap the ball of dough. Roll when you are ready to bake it. I have read you can also freeze the raw dough, but have not tried that yet.

Thursday, March 20, 2014

48 hours and counting..

The heart racing has continued off and on the full 48 hours. It woke her up too many times to count last night.


She still feels achy and sore, but improved over yesterday. Joints are tender still. Headache is gone though.


So far her stomach has been a little sensitive but no issues flaring up besides cramping-

Sleep, sleep and more sleep.


Kidneys are painful and definitely throwing protein at an increased rate.


The injection sites aren't too bad, one has a massive bruised look to it and there is some redness starting to appear around both sites.


So, far about the same pattern as the other go rounds.


Now to wait and see if she get the rashes flaring up, if her kidneys get worse, if her IC flares.. etc.


Clean clean diet and lots of sleep for now.




Animal Crackers (gluten free, dairy free, nut free, soy free, corn free)


Animal crackers that are simple,and a cross between a shortbread and a sugar cookie. They are small for little hands, or small so you can eat more :-)

I had planned to make these to attempt to ice them (trying to duplicate a Mother's iced cookie minus the chemicals and allergens) but I was secretly thrilled that these were very satisfying minus the extra work and sugar that icing them would have required.

Usually when I make cookies I don't mind if they spread a bit so I rarely place them in the freezer, but these because they are such small cutouts I did decide to freeze them to prevent any spreading. If they spread at all it really warps their shape.

I think you could cut the sugar by 50 percent and they would likely be just fine.


Ingredients:


1½ cups all-purpose gluten-free flour
¾ teaspoon guar gum
½ teaspoon baking powder(homemade)
1/8 teaspoon baking soda
2 tablespoons coconut yogurt(homemade)
1/4 teaspoon salt
¼ cup granulated sugar(domino's)
¼ cup packed light brown sugar(we use domino's)
4 tablespoons palm shortening(Tropical Traditions or spectrum), at room temperature
1 extra-large egg
1 teaspoon vanilla extract(homemade)

Preheat oven to 350

Mix all the dry ingredients. Then mix in everything else. You may have to work this by hand to get it stick together into a dough to roll.

Flour the counter and roll out. I used animal cookie cutters by Wilton ( I bought this Set. I think I found mine at Michaels Craft Store)


You can really pack the cookie sheet(lined with parchment) since these puff a bit but don't spread. When I rolled the dough out I left my dough pretty thick. I am going to guess 1/2 inch.


Place cookie sheet(with the raw cookies on it) in freezer for at least 15 minutes. This is really important. These cookie cutters are little so even the littlest bit of spread will distort the shapes and that is just no fun!


Bake for 8-9 minutes.(just showing a bit of golden around the edges)Allow to cool and keep them airtight.

Wednesday, March 19, 2014

Sick

By 8 hours after the infusion the flu like symptoms were in full gear. She aches head to toe,her bones and joints ached, Stomach upset, bad headache.. heart racing(though it actually dropped low this time too, 40) just miserable. Her oxygen level only dropped to 90 which is better then last time.

We were still hopeful last night before bed, flu like symptoms are pretty common and usually transient.

It is aggravating. She only has very very minimal and expected reactions during the infusion. This time her eyebrow's flushed which is her bodies latest SOS expressing it's displeasure.. sigh. On a positive though, often if she has an immediate reaction it settles down very quickly and doesn't continue to react throughout her body. Her ears felt plugged and full of fluid within an hour, which is a symptom she has always gotten with an allergic response. For years she was the queen of ear infections. She felt dizzy but I am sure that was do to the inflammation she developed in her ears. A touch wheezy, but really nothing worrisome.


To a certain extent side effects are very common with any of the Ivig/subQ treatments. Most people can use Motrin or Tylenol, or Benadryl or steroids to treat the side effects. Abby cannot. She has to just gut it out.



Sometimes if you can suck it up long enough after a few treatments the side effects will settle down.


Abby got a baby dose, literally. Even if she doesn't get worse(on previous tries she got worse and worse over the week) not sure her body can handle this every week.


Hoping as the day goes the side effects(reaction) will slow and somehow her body will decide this treatment is "okay". I think she could handle a day or two of feeling like a horrid flu has overcome her for a few weeks at least.


Thinking the reactions we saw last night are due to the "fillers" in the subQ. It is suspended in corn derived ingredients.


Time will tell. Still have some hope, but dwindling.

Sigh.

Tuesday, March 18, 2014

Last Try.

The sub-q adventure continues.


We are trying a different brand on Abby this morning.


For as much as I would love it be safe for her to use, based on the ingredients listed I am not feeling particularly optimistic.


I am simply hoping that her reactions aren't as violent as those she has had in the past.


Fingers crossed.


If she fails this one, she is done with sub-q. If against the odds she tolerates this? We might have a treatment for her.


I am loath to try it on her. I know that simply giving her a drop of vitamin D by mouth can cause a major reaction. Or using a topical ointment can build up and cause reactions..


Every moment of our days for the past few years has been analyzing everything that comes near her to avoid any reactions- so knowing this is likely to make her sick? It is a struggle to put her through it.


There are some very valid reasons for trying it today. It will be helpful to confirm, rule out disorders or if she gets lucky a potential treatment.


I really wish I was less pessimistic but her body has made it pretty clear it hates this stuff..

As I love to say, "It is, What it is."

She has had delayed reaction by about 4-8 hours in the past, so by this evening to tomorrow morning we will have our answer. On this journey it seems like most results take months to get, we all tease about hurrying up waiting. At least we won't have to wait long this round. :-)

Friday, March 14, 2014

Censored.



For many with Mitochondrial Disease their disease process prevents them or their families from leading normal social lives. Often these families are restricted to the home for the protection or care of their loved one.


Many are much like our family and DEPEND on the internet to be able to reach out and have human contact.


Mitochondrial Disease families face a lot more then just the loss of energy.


The loss of a social life

The loss of friends

The loss of family(hard to participate in camping,family events,parties,graduations etc)

The loss of watching their child grow and participate in school,sports, birthday parties,dating,proms, marriage and more.

The loss of their child because of either Mito or Child Protective Services.



A parent of a child with Mito may deal with Drs. who judge or do not believe in Mito. They may deal with family who simply cannot understand what their child is suffering on a daily basis.


I am lucky. I don't mind skipping out on the spa,starbucks, meeting the girls for lunch, walks for raising money, conferences, parties, and other social events. We find that the less exposure Abby gets to germs and unnecessary energy loss the better she does. I suspect our introverted life style is partially responsible for why despite her many health issues she has done so well.

We do however depend heavily on our friends online. For us, it at times is all the social and emotional outlet we have each day. I know many other Mito Families like ours that without their online Community they have been cut off from the only healthy outlet they have left. Their online community is the only safe place to share their deepest darkest fears.


Recently, many people have felt that the UMDF has been discouraging any discussion about Justina and the horror her family and she have been dealing with...many people have expressed that their posts to the UMDF facebook support group discussions have been banned/blocked/removed. To me this makes me feel just like I would if some public organization tried to censor any talk about the Holocaust. I can't say for sure if the UMDF is purposefully doing such things but enough people have expressed frustration, that I just wanted to offer my opinion about it.

Honestly, I am puzzled. If it is true, then for me this would be like going to an AA(alcoholics anonymous )meeting and being told you cannot talk about alcohol because it is too upsetting to a few of the members... wonder what type of people would be showing up for that kind of help? But I can understand as well. Every organization, and every person for that matter has the right to control their public image and if the UMDF wishes to keep themselves removed from certain topics or issues,no matter what part these issues play in the life of some Mito patients, then that of course is their right.

But I am saddened that our most well recognized non-profit for Mito isn't allowing families like mine to share our feelings about a topic that is a part of having Mito for some Mito families.

The Justina horrific situation is not just about CPS. It is a reflection of how very little our Government, Drs, schools have learned about Mito despite years and hundreds of thousands of donation dollars. Clearly, even though Mito was first defined well over 30 years ago, we have failed to educate the Public. Until we take a different approach, use our donated dollars in a different way, this will continue to plague Mito Patients.

Again, it is their right to censor their facebook page. And if that is what they are doing, then so be it.

I say this because it is my right to NOT support their organization, or at least that part of of their decision making if this is in fact true.


Right now besides Mitoaction there are a number of facebook groups that support Mito patients and all of the unfortunate issues they are faced with. For me, they are better aligned with the needs of my family because we want to be able to share our own fears and horror stories, and to be able to openly support other people who face their own scary and terrifying experiences as Mito Patients. For me and my family, we find comfort in knowing that others will listen to us in our difficult times, and lend us moral and emotional support, and we value that we can return the favor to others in their times of need.

Bottom line, if you don't like being unable to share what bothers you as a Mito family? Find a new group. Plenty of them out there.

Thursday, March 13, 2014

PEAR CLAFOUTI (gluten free, corn-free, dairy-free, soy-free, nut-free)



This is an easy one! Great for brunch or drizzle with caramel for dessert. It is really so pretty I hate to cut into it.
Best part is besides peeling and cutting the pears you can just about mix and make this one in your sleep.


PEAR CLAFOUTI

Ingredients:

1/4 cup grapeseed oil
3/4 cup coconut milk(or other milk of choice)
3 large eggs
2 tsp. vanilla extract(homemade, all store bought is corny)
1/4 tsp salt(I use pink himalayan)
1/3 cup granulated sugar(Domino's or C&H )
1/2 cup all purpose gluten free flour blend
1/2 tsp guar gum(would probably be fine without)
3 Pears – Peeled, cut in half and cored(pears are often coated with corny coatings,some can soak and scrub them with baking soda and safe water and then peel the skin, others however will be too sensitive and will have to hunt for a local source that practice corn free farming)

preheat oven to 350

grease a pie pan or round cake pan. (be generous this stuff will still stick but extra oil helps)

Mix oil, milk, eggs and vanilla. Add dry ingredients and mix until smooth. (it will be thin) Set aside.


Cut each half pear in horizontal slices. Place each half carefully to keep the half pear form, in greased pie pan.

Pour mix carefully over the pears. Place in oven and bake 35-40 minutes. Check center to make sure it is baked all the way through.


Sprinkle with powdered sugar and serve, or like us you can drizzle with easy microwave caramel sauce.


Caramel Sauce recipe:

1/4 Cup palm shortening(you can use coconut oil,but with caramel we have had more consistent results with palm)
1/2 Cup Sugar(domino's)
1/2 Cup Brown Sugar(domino's)
1/2 Cup cream from the top of a can of cold coconut Milk(or off the top of homemade)
1/2 Cup Lyle's Golden Cane Syrup
coarsely ground Salt(about 1/2 teaspoon we use pink himalayan)


In large microwave safe bowl combine; palm shortening,granulated sugar, brown sugar(light or dark),coconut milk cream, Lyle's. Combine a bit and microwave for 2 minutes. Stir well. Microwave for 2 more minutes. Stir well. Microwave for 2 minutes more(I did 2 minutes and 20 seconds, my microwave is older). Stir. Let it cool for 5-10 minutes it will thicken, if it thickens too much before you are ready serve it a quick 15-20 seconds in the microwave will thin it out well.

Monday, March 10, 2014

Carob Crinkle Cookies(gluten free, corn free, dairy free, nut free,soy free)




We still are not sure that carob is completely safe. She has done "okay" with both Frontier and NOW brand. However, both do seem to have a buildup reaction. Since Abby reacts to "everything" she might be reacting to the carob itself or to a slight corn contamination. Either is possible. However, if we minimize how much she eats like a couple cookies once a month with an empty bucket she seems to tolerate Carob powder well enough.

I don't know any corn sensitive folks who have tried the various carob powders for safety yet. So for now, consider even the "cleanest" carob powder "corn-lite" at best.


You could easily use a safe corn-free cocoa powder(reported reactions now to Rapunzel by the more corn sensitive population.)


NOTE: I have not tried this with coconut oil. Coconut will spread, this can be reduced by chilling the dough and increasing the flour by a tablespoon or two.. but even then it would trial and error.

Carob Crinkles:

1 1/3 cups gluten-free flour blend
1 teaspoon guar gum(though they work well enough without gum)
1 cup sugar(domino's granulated)
1/3 cup packed brown sugar(domino's)
1/2 cup carob powder (NOW or Frontier, Corn-lite, proceed with caution)
1 tsp. baking powder(homeade or Hains brand)
1/4 tsp. salt(Abby does well with Pink himalayan only larger rocks to grind, the already ground is corny)
1/3 cup Tropical Traditions palm shortening(or Spectrum), room temperature(if you can have dairy,safe butter works)
2 large eggs, lightly beaten
2 tsp. vanilla(homemade)
powdered sugar, for rolling(1/2 cup homemade or corn-free is plenty)

Preheat oven to 350°F.

In a large bowl combine the flour, sugar, brown sugar, carob, baking powder and salt. Add the shortening and stir with a fork or pastry cutter until the mixture is well combined and crumbly.

Add eggs and vanilla and stir until the dough comes together. The dough will be pretty dry, no worries. It might seem that there isn’t enough moisture, but if you keep stirring, it will come together.

Place a few heaping spoonfuls of powder sugar into a shallow dish. Roll dough into 1 1/2” balls and roll the balls in powdered sugar. Place them about 2” apart on a parchment lined cookie sheet. Bake for 12–14 minutes, until just set around the edges but still soft in the middle.They will be a touch soft at 12 minutes but as they cool they do get firmer.

Makes about 1 1/2 dozen cookies.

Saturday, March 8, 2014

Snake Oil, Beware!

If I thought wrapping Abby in bacon and soaking her in a snake infested bayou would "cure" her? It would be tempting. I probably would not do it though even if "everyone" else was doing it. I am not one to jump off the bridge because everyone else is doing it. I sure would read about it though. I would ask lots of questions. I do really believe there is much unknown in our world that should not be ignored. Gotta have proof though.


I google search "Mitochondrial Disease" every couple weeks to see if some new research has come out.

Lately? I have been finding all sorts of supplements,vitamins, and Essential Oils all claiming to be either life changing, "cure", treatments, etc for Mitochondrial Disease.

If it sounds too good to be true? Odds are it is too good to be true.


I think the fact that much of treatment for Mito is based on taking supplements kind of leaves the door open for misunderstandings.


1) You need to know what is in the supplement. Vitamin and supplement companies are self regulated and are not doing such a great job. Make sure you know what they are putting in those "magic" pills.

2) They actually might work. It is a known fact that poor nutrition contributes to Mitochondrial Disease. If the supplement/vitamin happens to have vitamins you are deficient in, you actually may benefit. Do talk with your Dr. before starting any supplement,vitamin, herb.

3) Essential Oils. I love them. There are a few we have found helpful to reduce symptoms, but NOT a cure. Overall they can be soothing, stress relieving. For example clove oil mixed with coconut oil and swished in your mouth really can reduce tooth pain. Those oils though come with side effects. Many sellers do not either tell the buyer or even know what the potential negatives are. They "assume" the buyer knows what they are doing. Did you know that Tea Tree oil can interfere with estrogen? We have used tea tree oil topically for many years and I did not know that until recently! I strongly recommend talking with your Dr. and finding reliable resources on the side effects of any oil you chose to use topically. I know a few of the popular(and insanely expensive) oils claim they are all safe by mouth. They are not, even if the oil is "pure" and "clean", the compound itself could have negative side effects. The sicker you are the more likely you will be to suffer the side effects. Please talk to your Dr. before taking anything orally.


Essential oils may relieve symptoms but they aren't going to cure genetic mutations. Common Sense folks.


Expensive doesn't always mean safe. Popular doesn't mean healthy. (Way back when we used to think cocaine was a great treatment for everything,they recommended it for everything. That we have proved wrong, right?)

Do your research. Talk to your Dr.

I am not against alternative treatments or even medical treatments, but with both often the patient doesn't understand the risks, side effects or long term consequences.

Be smart don't buy into "snake oil", but do trust your gut. Nothing wrong with a some great smelling lavender.. might help you sleep, but a mug of warm milk might help you sleep just as well and it is gobs cheaper. That is unless you are allergic to milk. :-)


Friday, March 7, 2014

Latest Vocabulary

Hypersensitivity type III( I-IV)

Immunological memory

Arthus Reaction

Vasculitis

Witebsky's postulates

Pityriasis rosea

IgG

Methylation

MTHFR

SAMe

B-5

vascular permeability

autoimmunity

Secondary Minimal Change Disease

Urticarial vasculitis

Hypersensitivity pneumonitis

cytotoxicity

Hypersensitivity Type IV

CD4/CD8


Wednesday, March 5, 2014

Red Bean Paste Quick Bread (gf,cf,sf,df,nf,sf)


There is nothing easier or better then a slice of ice cold or steaming hot quick bread. Be it a slice of banana bread, pumpkin bread, or zucchini bread they are all popular and delicious.

When you cannot have squash, or banana's you have to get creative to still have that same satisfying experience. We have come up with some great options. Sweet potato is a favorite but we are always trying some new options. This is a great one!

Red Bean(Adzuki or azuki bean) paste is very popular in Japanese and Chinese desserts. According to Dr. Weil's "Like many other beans, adzukis are a good source of magnesium, potassium, iron, zinc, copper, manganese and B vitamins. Also of note is the adzuki's status as the "weight loss bean," since they are so low in calories and fat, yet high in nutrition. Additionally, they are relatively easy to digest, so they should not give you gas as other beans do." Abby usually doesn't digest darker colored beans well, but she has always done very well with azuki beans. It is not prepared as sweetly as American's might prefer so if I make red bean paste from scratch I tend to sweeten it up to our sweet tooth standards. There is one brand of canned that Abby seems to tolerate but homemade is easy. Canned foods we avoid mostly because no matter what the ingredients claim, there is a good chance anything that is canned is either corn contaminated or the cans are not lined. I also had some frozen cherries really needing to be used up so for the heck of it I threw those in as well.

The red bean paste really brightens up with the cherry flavor, and if you can have almonds, the flavor of almonds are the perfect flavor match with both red bean and cherry. We are nut free so no almonds for us, it was still delicious!

If you opt to use canned red bean paste, I do recommend adding 1-2 tablespoons of liquid and some sugar. It can be too thick and dry straight out of the can. You want to visualize the moisture you would find in a mashed cup of banana's when preparing the beans to be used in this quick bread.

This bread is sweet,heavy, dense and moist. We preferred it chilled. I had a little bit of the red bean paste leftover and we spread it on each slice. It was the perfect topper.

1 cup red bean paste.(homemade or canned if you can find it safe) I cooked in about 1/4 cup frozen cherries.
1 1/2 cups all-purpose gluten-free flour
1 cup granulated sugar(domino's)
1 teaspoon baking soda(Abby is still fine with arm n hammer)
1 teaspoon guar gum(or ground chia for those who are gum free)
1 teaspoon salt(we have been using pink himalayan)
1/2 cup TJ's grapeseed oil(soften butter would be a good option as well if you are not dairy free)
2 large eggs
2/3 cup "buttermilk" ( 1/3 cup coconut yogurt diluted with 1/3 cup water is what we substitute)
2 teaspoon vanilla extract
OPTIONAL: !/2 cup slivered almonds,longans, cherries etc.

Preheat oven 350

1) mix all dry ingredients in bowl. Add the rest of the ingredients except the optional almonds, and mix till well combined. If you are adding almonds,nuts, or any dried fruit now would be the time. (dried longans? Raisins? Dried cranberries? anything goes.)

2) pour into well greased loaf pan.

3) bake for 1 hour to 1 hour and 15 minutes. Check for doneness with a toothpick or knife. Allow to cool.

Wrap tightly to keep moist. I keep mine in the fridge.

NOTE: If you do manage to have some of this leftover(rare in our home!) this makes a terrific bread pudding or overnight french toast casserole.

Saturday, March 1, 2014

Canadian Bacon(gluten free, chemical free, corn-free, soy-free, )


Abby cannot have pork or beef but Derek has been corn-lite(going for corn-free!) and trying his best to eliminate chemicals from his diet.

He MUST have pork and beef, and he loves it cured and smoked, it is impossible to find safe cured or smoked meats in the grocery store.

Many DIY recipes call for salt peter(pink salt) to keep the meat an attractive "pink" color. Totally NOT necessary for flavor or safety. You don't need it. It isn't good for you.

Find a great local hog farmer. More and more are now recognizing that their cliental base includes many of us who would avoid corn and soy not just from allergies but because they are GMO. Better then 90 percent are now GMO. So safest option is to simply eliminate them(and the massive list of hidden sources!) from your diet. Our farmers are listening!

This was a grocery store bought pork loin(decent quality,but still likely full of stuff we usually try to avoid)... shame I know. But, at least with home curing we are removing some of the negatives. IF you are corn-free proceed with caution when you buy pork, do your research.

NOTE: My brine is almost twice as concentrated as many recipes I have read. We like a very intense flavor. It hasn't been too salty for us but if you want a blander or less flavor packed meat you simply increase the water. I have done this brine with twice as much water and it was good, but not the knock out this is with the reduced amount of water.


1 pork loin
8 cups of water
1 cup of salt(I finely ground pink himalayan)
1 cup of brown sugar(packed.) We use Domino's.
2 cloves of garlic, lightly smashed to release flavor
1 teaspoon of black peppercorns
3 bay leafs
3-4 tablespoons of grade B Maple syrup(Grade B has a much deeper maple flavor)

pour everything but the loin in a pot. Cook till the salt and sugar are well melted and incorporated(doesn't take long).


Allow to cool to room temperature or chill in the fridge.(DO NOT put the loin in a hot or warm brine ever!)

Once cooled, dump your loin in and seal it up. Either find a weight to hold the loin under the brine or each day make sure to flip the loin to make sure everything gets a good soak.

I let my soak 5 days. up to 7 days but never longer.

I pull it out and dry it off. At this point you can smoke it(I STRONGLY recommend this) or you can slow bake it off in the oven at 250 until the internal temperature reaches 160(I have read 150 too, but better safe then sorry).

If you opt to smoke it(I strongly recommend this) I find 3-4 hours smoking works. My smoker doesn't get hot enough to bring the internal temperature up high enough so after smoking I finish it in the oven, again cooking until the internal temperature reaches 160.
Don't try to cut until it is fully chilled. I wrap it tightly(smoked meat is a very strong odor in your fridge!) and slice it thinly the following morning. I usually split it up and freeze a few portions. Like any other meat leftover this is best used within a couple days. So make sure you go ahead and freeze what you don't intend to eat pretty quickly.
We use this instead of smoked ham lunchmeat for sandwiches- really amazing meat.
 
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