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.

Tuesday, December 31, 2013

Sad to See 2013 Go...

It was a great year for us, for Abby.

Granted, we have had our share of hiccups, but we also confirmed some suspicions, it is clear that there are some Mast Cell issues and immune issues occurring that explained the increase in health issues, it is not progression, but Mast Cell issues. This is HUGE. This means my Mom Gut was RIGHT(I love it when I am right!). It would have been easier to simply throw in the towel after 16 years of hunting for a diagnosis and just accept the Mitochondrial Depletion as the only issue. We don't give up. We just KNEW there was more to Abby then that.. It kind of frightens me a little to think that if I had quit looking for answers? How very sick Abby would be. Had I just accepted the Depletion I can only imagine how grim my post would be today.


2013 gave me back hope. Helped me realize what some would call nuts, we call determination and hope.


2013 was packed full of moments when I realized how incredibly lucky I am to have an amazing family.



I really hope 2014 is just as full. For once I feel like a grown up. I know whatever 2014 brings, we can do it!


How fortunate I am to have have my online friends. I am in awe of these strong women and men. Of their amazing knowledge. Of their willingness to read through articles looking for clues to not just help their own children or selves, but to help others. So many are fearless in seeking answers. Their willingness to keep fighting even though it might be too late for their child, they fight to protect yours. I am surrounded by hero's.


I will also always remember 2013 as "Justina's Year.". It is now public knowledge that some Drs. discriminate against patients who have Mito,a proven genetic disease. On one hand I am grateful it is no longer the dirty little secret of the Mito Population, on the other hand I don't think anything in my life has horrified me more then knowing the very Drs we trust to heal us are so willing to hurt us.

My hope is in 2014 there are no more cases of false allegations. That we are no longer discriminated against for having a genetic disease. That as a population we are willing to be brave and speak out. This type of discrimination was supposed to have ended with the last Leper colonies- clearly it hasn't.

On a positive, I have witnessed our community unite. As a community we will no longer allow our friends,our community to be punished and discriminated against. I am beyond grateful that MitoAction has led the charge. They are the ONLY patient advocacy organization that I feel actually is willing to prioritize the patient. Their advocacy may protect hundreds of families from suffering what Justina has suffered, what so many others have suffered over the years during the veil of secrecy that was causing more harm then good. I am so grateful that 2013 may be the beginning of the end of hideous and destructive treatment of Mito Patients. For all those willing to advocate, who work tirelessly to speak out, to offer support, to raise funds,that have shared their stories of horror of being abused and discriminated against by Medical personnel, those who are willing to stand in the cold? You are all hero's and I am grateful.

I see 2014 being a great year for my family. I have every hope that we will find a way to open Abby's world more. To control some of the symptoms that too often control her body. I hope I continue to grow, to feel like a grown up. That I never again feel afraid or nervous about advocating for Abby. I hope as our world grows brighter I am able to give more back.

Of course I still hope Obamacare is stopped before it finishes destroying our Country- I figure if hoping did Abby so much good this year, the hope of the majority of American's to protect our Country from ruin has got to have a little power right? :-)

Happy New Years! May 2014 bring health. Strength. Moral clarity. Unity.





Sunday, December 29, 2013

Buckwheat Figgy Cookies(gluten free, soy free, dairy free, corn free)




One of the things that Abby and I have really missed is oatmeal. Well before project elimination started, she and I both got violently ill from oatmeal- only took 3 different servings for us to figure out that we were allergic/reactive to it. So disappointed.


I love oatmeal scotchies(I admit,every now and then I mourn the loss of those chemical,corny, butterscotch chips), oatmeal raisin, oatmeal in my crisp, oatmeal no-bake cookies..


Maybe since we have been without for so long we are finally willing to try to substitute something else for oatmeal, or maybe it is just are absolute love for buckwheat groats that have made us decide to try to replace at least a few old favorites with buckwheat instead. You simply cannot beat the nutritional value of buckwheat and we simply don't use it enough here in the US. So glad we have been able to incorporate buckwheat into our diet. Abby seems to digest it very well.


I toasted the buckwheat groats and then coarsely ground them up in the ninja single serve.(about half their size,some finer some bigger just a quick spin or two better too fine then too coarse,we wish we had ground ours a little smaller for a little less crunch.)

We did figs instead of raisins and I had coconut flakes so thought, why not?


When I tried the raw cookie dough,I admit I just wasn't that impressed. Disappointed that it did not remind me more of oatmeal cookies. But, I found myself tasting again, and again and again, well, you get the point these are easy to fall in love with.. some crunch, sweet, chewy. That nibble of sweet tender fig(or raisin). Then I baked them. Bingo! Still pretty crunchy, but a little softer as far as the buckwheat. Really turned out to be a cookie we are going to want to make often. After eating one(or two or three) Abby and I decided they do remind so a little of the oatmeal cookies we miss, and really the differences make them even better.



1 cup gluten-free flour
1 teaspoon guar gum(you could probably omit but the buckwheat doesn't bind well)
1⁄2 teaspoon baking soda
1⁄2 teaspoon ground allspice(or cinnamon if you tolerate it)
1/2 teaspoon pink himalayan salt
1⁄4 cup coconut oil(solid but not hard)
1/4 cup palm shortening(room temp)(Tropical Traditions)
1⁄2 cup packed brown sugar
1/4 cup granulated sugar
1 large egg
1 cup toasted,coarsely ground buckwheat groats
1⁄2 cup diced and stewed figs(I soak the cut figs in boiling water and allow to stand in the water for 30minutes,drain water)
1⁄4 cup coconut flakes(tropical traditions)

DIRECTIONS

Preheat oven to 350

1) cream coconut oil,palm shortening and sugar together. Add egg, mix well and set aside.

2) In separate bowl combine flour,guar gum, baking soda,allspice,salt. Add sugar mixture and mix until well combined. Lastly stir in buckwheat,coconut and figs.

Chill for at least 1 hour.(If you opt to use all coconut oil you really need to make sure it is very chilled, at least 4 hours. If they still spread add additional 1/4 cup flour to the dough)

Spoon on to cookie sheet and bake for 8-11 minutes. Allow to cool before transferring.

Tuesday, December 24, 2013

Merry Christmas!

Christmas is just extra important in our home. I think in many families with chronic illnesses Christmas has extra meaning.


We can step back and appreciate the joy, love and serenity that the holidays should bring. Our family feels "normal" for a couple days in that we appreciate the same meaning as those who live so very differently then we do. This holiday evens out the playing field.



For us, we step back and give thanks that Abby has done so well. Give thanks that we continue to seek ways to heal her, and not just accept anything less. We never throw in the towel. We fight. That we have the energy and stubborn spirit to do it.


I am grateful that I can keep Abby safely at home. I am grateful that I have the passion and energy to come up with some seriously insane, though tasty food options to keep her system happy. That all of us work so hard to keep her entertained and healthy at home to avoid germs and reactions, and she is thriving. I am grateful that I not only love my family, but I truly enjoy their company above anyone else. Grateful for Derek and his love for all of us. Especially grateful for Sara, she is friend,daughter, and Abby's and my best support. We are so gifted to be a strong and loving family, above all else.


We are fortunate.


My heart goes out to Justina imprisoned at Boston Children's Hospital and I hope this will be the last holiday she is kept so cruelly from her loving family.

My heart goes out to those stuck in the hospital or separated from their families. (My thanks to our Active Duty!)

My heart goes out to the families who have lost a child, sister,brother, Mother or Father this year.


Merry Christmas and hope everyone's New Year brings good health and good fortune.

Friday, December 20, 2013

Mashed Potato Waffle(Gluten free, dairy free, soy free,nut free,seed free)

Abby has been reacting to yeast(we think) so I am playing with some replacements for bread for various dishes. Luckily, she does very well with potato's and potatoes are a favorite and staple in our home.

I am thrilled with these, light and crisp(the inside reminds me of cream puffs) I think I may use them for breakfast waffles next(just adding a little sugar and removing the pepper and reducing the salt). These reheat well which makes them even better as I can make them in advance and freeze.




2 cups prepared mashed potatoes(I mash Abby's with coconut yogurt)
2 large eggs
1 cup rice(or milk of choice) milk(homemade rice milk- there is NO completely corn-free store bought rice milk)
3/4 cup all purpose gluten free flour
½ teaspoon baking powder(Hain's or homemade)
¼ teaspoon baking soda
½ teaspoon salt(still using pink himalayan)
¼ teaspoon pepper
2 tablespoons grape seed oil(TJ's)


Mix it all together and warm up the waffle iron- that easy. I do recommend making sure your waffle iron is very well greased and hot. I disregarded the light on the waffle maker, and instead waited until there was little to no steam left. If you try to remove these too soon, they will split apart. Better to let them go a little longer then you think.


I served these with chicken sloppy joe sauce(red pepper sauce instead of tomato sauce). (chicken and waffles!) A fun and tasty replacement for gluten free bread.

Wednesday, December 18, 2013

Reacting..

We KNEW she would react, after all the stuff is packed full of corn.. but I am just disappointed, and feel a little guilty watching her feel badly because of a decision she left to me.. I really HATE CORN!

Her leg took a week before it bruised and popped up with the rash last time, this time it got busy quickly. Her leg is quite swollen, the pinprick rash is kicking in, and the whole area just looks dark-pretty much like someone ran her over with a car!

Of course the leg is tender and she is struggling to get in and out of bed and up and down off the couch,and hobbling around the house which even that I don't worry too much about..

Yesterday she kept having tachy events off and on where even her oxygen was dropping.. Luckily, they seem to come and go, we have seen this before with her reaction to kombucha- so it is all in the "reaction" category.

Dizzy and distant..


chills..

Headache..

Worst, lots of protein started up last night..


On the positive, she isn't as miserable with the "flu like" symptoms. Which is a huge positive and improvement over last time. The flu-like symptoms are very common for anyone receiving IVIG or Sub Q treatments. The fact that hasn't been as bad is leading me to think it is that her body is that insanely sensitive to corn and other "stuff" it is relentlessly reacting. Just maybe it isn't the therapy that made her so terribly sick, it is the thick and sticky corn they mix it in.. horrifying to witness such a visible and dangerous reaction to corn. So doing the therapy again, did help. It clearly indicates she really is that insanely reactive to corn and other allergens in the mix.


IF she get's no worse, we would consider another round. However, from a long term standpoint, she has enough room on her body for maybe 2-3 more weeks of treatments. The first rash/bruise leg from back in August is still not all the way healed up.. and this leg from Monday? Very angry looking mess. I cannot help but visualize what her body would look like after a full month of treatments.


I have been told by lots of patients that many of these side effects are not uncommon.

So here we are Weds, and just have to see what the rest of the week brings.

Trying to be hopeful, without a lot of hope this is going to work out for Abby.


But, we all want to make sure we do what we can to get this to work. It makes a TON of sense. If you can tweak the t-cells,or how the immune system reacts, it can impact the Mast cells and the Mitochondria possibly- they do all overlap in what they do..

Come Monday, will we do it again? I am trying very hard to wait and see what each day brings.

However, based on the slow building spiral of issues- If I thought this second dose was a bad idea, a third dose? Pushing stupid.

Monday, December 16, 2013

Candied Coconut Macaroon's (dairy free, gluten free, soy free, nut free, corn-free)



Easy and fast. Make the sweetened condensed coconut milk ahead of time as it keeps well in the fridge.
Make sure you use parchment paper and you might even consider greasing the parchment, these tasty little candied goodies stick something fierce! Definitely a must make for our annual Christmas baking. I had some frozen cherries I thawed and drained. Not the same as maraschino cherries, but they were just fine! I am sure you could use a piece of dried fig? Raisin? Dried pineapple? Whatever you have on hand that will offer a contrast. If you can have almond extract these really shine, but no nuts or almond extract for Abby(store bought extracts are all corny.)





Ingredients:

1 3/4 cup Sweetened Condensed Coconut Milk ****
1 egg white, whipped(soft peak is fine)
2 teaspoons vanilla extract
1 3/4 cup flaked coconut
Cherries(I used some frozen I drained well and cut in half)

Directions


Preheat oven 325 degrees F. Line baking sheets with parchment. Set aside.

In large bowl, combine sweetened condensed coconut milk, egg white, extract and coconut; mix well.

Drop by rounded teaspoonfuls onto prepared baking sheets; slightly flatten each mound with a spoon.Press half a cherry in the center.

Bake 15 to 17 minutes or until lightly browned around edges. Immediately remove from baking sheets (macaroons will stick if allowed to cool. Store loosely covered at room temperature.


****Sweetened Condensed Coconut Milk

1 can arroy d coconut milk
1 cup domino's sugar.


Combine and simmer on low. 45minutes to 1 hour. Till it has reduced by aprox 50 percent.

Sunday, December 15, 2013

Grandfather's Soup with Gluten Free Dumplings(dairy-free, corn-free, soy-free, etc. )




Abby and I spotted this recipe in a Russian and Polish cookbook. We were skeptical that it would be any good because it was just "too simple." The introduction to the recipe explained they call it "Grandfathers Soup" because it is simple and easy to digest. Last night it was late and everyone was feeling discontent about their food choices so we gave this a try! So glad we did. Gluten free dumplings are a very different beast then wheat dumplings. The gluten helps hold wheat dumplings together, where gf flours tend to fall apart quickly in fluid. With a little trial and error, we figured out that gluten free dumplings can be made, just have to do it a little differently.

Hands down? This was surprisingly flavorful. The original recipe called for beef broth which Abby cannot have, but chicken worked beautifully. It was easy to digest as promised, and gf dumplings are delightfully delicate and light. A new favorite around here for sure.




Soup Broth
:


1 large onion, finely sliced

2 T grapeseed oil or coconut oil(to saute onion and potato) Tj's grapeseed oil or TT coconut oil.

1 large peeled and finely diced potato

4 cups chicken broth(or beef if you tolerate is great. We make chicken only for Abby)

2 bay leaves

1/2 teaspoon thyme

salt and pepper


Saute onion till they start to brown. Add potatoes, and saute for a few minutes. Add broth, bay leaves, thyme, and salt and pepper. Cook until potato's are tender.

The Dumplings
:

While broth is cooking prepare the "drop noodle." (aka dumpling)

1 cup gluten free flour
1 teaspoon baking powder(Hain's or make your own)
1/2 teaspoon baking soda
1 teaspoon guar gum(we have been using NOW brand)
1 Tablespoon palm shortening(Tropical Traditions)
fresh parsley
salt and pepper
2 eggs.

Combine dry ingredients. Cut the shortening into the dry ingredients. Mix in eggs until dough forms.

Make small balls of dough, I estimate about 1/2 teaspoon of dough(this recipe makes a ton of dumplings, you may want to half the recipe)

Bring broth to a rolling boil. Place a few balls of dough in broth and cover. Cook about 3-4 minutes. They will fluff up in the boiling water. Gluten free dumplings cook faster then wheat dumplings. They also tend to fall apart more easily and breakdown in the broth. It is very important to remove the dumplings as soon as they are cooked. I place them on a plate. When you have enough dumplings, place broth in bowl and place a few dumplings into the serving. Garnish with fresh parsley.

TIPS: I did try to just drop bits of dough in the broth without rolling them into balls. They kind of held together but did break down very quickly. Rolling the dough into small balls(bigger then a marble but not much,they will double in size when cooking)they cooked much better. Keeping the size of the ball of dough smaller ensured the dumpling cooked all the way through but held it's form.

If you have leftovers, do NOT store the dumplings in the soup. Store the dumplings in a separate container.

Friday, December 13, 2013

Mito is an UGLY Disease

poop

pee

diapers

vomit

illness

POTS

fatigue

constipation

cognitive issues

behavioral issues

screaming

tantrums

tears

autism

drooling

seizures

Mast Cell Activation Disorder

gas

diarrhea

blood

pus

Dysautonomia

bad hair day( :-), well it is true, with a teen daughter not having the energy to "dress" or do hair is a major issue!)

bloated

edema

tubes

liquid diets

medications

infections


Shall I go on? We could talk about sex life, marriage, dating, reproduction.. it just gets uglier.



It isn't pretty. It is one of the ugliest diseases. It takes everything. That list was just the shortest version of the "physical list" how about the emotional side?


I appreciate that getting awareness for an unknown disease is difficult. I have been frustrated like many that it seems no one knows what Mito is, and/or our Drs. and hospitals don't "believe" that Mito exists.

We all watch the Breast Cancer Association commercials and all the pretty pink pens,shoes and other pretties that we associate with the disease and their advocacy. Those warm and friendly ladies all looking so tidy,healthy(or at least feminine and affluent) and active while running or walking in their race to find a cure. Kind of a feeling of celebration, happy party kind of feel to it all.. I don't donate to breast cancer awareness because that is NOT the truth about breast cancer in my experience. Breast cancer can rob a woman of her identity, can kill her, the medications rob her of her hair,her energy and health.. it is torturous, far from " pretty and pink". The irony gets me upset every time. I know they are trying to sell the dream that once cured everyone will be happy and healthy, but I am not buying it. It stinks of marketing,packaging- just fake and fake to me equals lies. Surely I am not the only one who figures when folks look healthier and more affluent then I do, clearly they do not need my help? I treasure homemade gifts with all their imperfections, they reflect reality. When someone tries to sell me something so perfect? I am suspicious.

Mito isn't pretty. Having snapshots of cute, happy and healthy looking kids isn't what I see when I think about Mito. Seeing groups of mito patients hanging out and smiling isn't what I know about Mito. Seeing adorable kids with tubes hanging out of them with perfect hair and cute clothes, isn't what I see when I see Mito. IT is like some mysterious advertisement and marketing campaign, some sort of weird undefined social pressure being put on the families, that is trying to hide or suppress everyone who's mito journey is too ugly for the public to see.

Seeing those pictures and feeling that pressure to be a pretty advocate makes me feel there is no way Abby has Mito because we don't look anything like that. Mito(as we know it) is not pretty in our house. Mito is unmade beds. Mito is greasy,matted hair. Mito is comfy but ugly clothes. Mito is drawn tired sick looking faces. Mito is pain. Mito is upset stomachs. Mito is crying. Mito is anger. Mito is alienating. Mito is hidden. Is our version of Mito so shameful they need to make a "pretty" face to represent the ugliness? The higher rate of CPS involvement. The fact that most primary care Drs still do not believe in Mito,well at least our version of Mito(yours too?). The fact that hospital after hospital will not take a protocol letter seriously. It is ugly. Really really ugly and to hide that sends a message of shame to me.

Although I do firmly believe that for Abby her depletion is secondary, At some small level inside me I fear that it could be primary, but I feel like this disease has no room for us. We are too "ugly" to be represented, we don't fit. I am not alone in this feeling.

Why do so many Drs. not believe in Mito?

Why do I feel ashamed that it is on her record?

Why don't Drs take the Mito Specialists and their protocol's seriously?

Is it the fault of the tired,ugly patient? (NO!!!!!)




Frankly, those type of issues are way beyond my pay grade. I am not a Dr, so not my job to make my Dr. believe in Mito, or somehow force them to read literature, or force them to call a Mito Specialist when the Dr. disagrees with the very existence of the diagnosis and Speciality. Out of all the Drs. Abby has seen, I would need a very powerful magic wand to convince most of them. This is an issue for the Drs. to sort out. I don't have the medical education to do the argument one bit of good. Patients don't have the education(in most cases) to even begin to fathom the issues within the Medical Association. Yet, I feel we are being asked to bear the burden.

I get it, patients and their families make the best advocates, after all, we are the ones with the most to lose or gain. but why not on our terms?


When I watch the ASPCA commercials I WANT to give them money. Why? Because they show me the ugly side of animal abandonment and abuse, they show me what they are trying to fix. I want to give my money to help those poor,sick, ugly dogs that NEED me. Why would I donate if they showed me pictures of cute,fluffy puppies? I also want to know that when I donate money that the money goes to those dogs to be helped , not just used to generate funds to build new shelters(office space), or make new commercials.

IF we don't show the world the "ugly" side of Mito, if it all just seems pretty, those like me will save their dollars to give to a cause that needs them. Pretty means their help is not needed. I am a pretty simple kind of person. So maybe I am the only one who doesn't want to give money to people who have more then I? That appear healthier and happier then I?

Dealing with Mito is the ugliest thing most families will EVER have to deal with, why add the burden of expecting them to try to make it pretty too? To make them responsible to teach Drs? Media? The Public?

This disease is ugly. There is no hiding it. Perhaps we should let the world see it for what it is? Because quite frankly trying to put lipstick on the pig is getting us nowhere.

For my entire life I have been told repeatedly, "Just be Yourself". So let us let Mito be itself. Mito is what it is... it is ugly, traumatic, suffering,illness,fear, social stigma,hated, and sometimes deadly. It isn't pretty.

As a family, we have been through a lot. We have dealt with issues that were more life threatening. Why does it make me ashamed to say "My daughter has Mito?" When I think of everything else we have overcome I feel proud. When I think of Mito I feel the need to hide it.

Why feel shamed? We cannot hide the ugly. What good does it do to hide the truth?

If I attempt to teach my Dr about Mito, I know too much. If I don't teach my Dr. about Mito and be a "pretty advocate" for Mito, I am failing at Mito Advocacy. I cannot win.

Some patients think we should "hide" the cases where CPS is called on Mito Families because CPS is part of the ugly. They don't want the "public" to associate Mito with CPS. I disagree. Plus, it is too late, the proverbial cat is out of the bag. We, are the "public". We already know, why deny it? There is a higher incidence of CPS involvement with families who suffer from Mito, it is the truth, and it is UGLY too.

No more secrets.

If it were your family that CPS investigated just because you had a child with Mito? How would you feel when there were so many pretending that ugly did not exist..

Admit it, Mito is UGLY.



The Top Teeth are Done!

Each month she struggles more with each appointment. However, this week was the final repair on the top teeth! A huge milestone!


I am hoping that the bottom teeth are easier. I hate to see her miserable for a week after each appointment. Abby is made of tough stuff though and having her teeth restored is important to her, and us. If we ignore it the health of her teeth they will only get worse which will make the rest of her worse as well.. so it has to be done, but I sure wish it was easier. I am dental phobic and to see what going each month does to her makes it incredibly difficult not to cancel the next appointment. It always causes her kidneys to flair, and the pain in her body.. the fatigue,headaches. the GI upset we tread so carefully with..fixing one tooth has a huge cost to her body. Yet, when she grins and shows me "no more holes Mom!" I get over my own issues- if she can handle it, so can I. Abby has the best smile ever. When she smiles it transforms her face. I think because her muscle tone has always left her looking almost "sad" when relaxed, when she grins? It is like sunshine on a rainy day. Worth it.


The only other new thing is we are going to try the Hizentra AGAIN.


To be honest, my GUT is screaming Don't Do it! Abby's gut is screaming as well. Unfortunately and fortunately we trust her Immunologist. We ran all the scenario's back and forth and he made perfect sense as to why we need to try this again. He is one of the first Specialists ever to really seem to get the complexities of Abby and to understand why we do what we do for her. He gets we need to know the science and his opinion- just one or the other is not enough for us when it comes to Abby.

Of course we have taken HUGE efforts to ensure she is not overdosed this time, hoping that will help reduce the reactions. However, she will react no matter what.. ALL of the sub-q and IVIg treatments have corn. The big concern last time was it the corn or the actual treatment? I don't think I have ever seen her so sick before.


There just aren't a lot of options out there, and none that are any safer. We have gotten by somehow with her with zero meds, zero vitamins.. but there will come a point when she gets hurt, or gets an infection or a zillion other things could happen where she would need medical interventions, and as it stands? It would do more harm then good, the reactions to the IV's or meds so far have been worse then any illness for her, having to go anywhere near a hospital is probably the most dangerous thing that could happen to Abby right now. If it is possible, to "reset" her to do something to reduce her reactions to a more manageable level, we have to try.


It also would help her kidneys if she could tolerate a tiny dose of an Ace. For whatever reason on this whole journey her kidneys and their issues bother me the most.. well, the kidneys and her toenails.. I am sorry, but it just simply freaks me out at some instinctual level to see her toenails die and start growing again- to have a gap, it is very upsetting. I would be thrilled if we could stop the toenails, or the kidneys or she could leave the house without getting sick.. I will take any 1 of those things.

We always manage, and Abby is a rare individual to make the best of everything. But, despite what my gut is saying we all feel the need to face our fear on this hizentra. It is a "chance" to make her feel even a tiny bit better, it is worth it. The decision is even harder in that though she is "grown" she still trusts us, and I think she too would have been happier if I had said no way. She trusts me. Ugh.

Best we are hoping for is no reaction(okay, at least less reaction). IF she doesn't have another major reaction it can take months before we saw any benefit.. knowing Abbys body? Who knows what is coming our way.

I am guessing we feel like someone who is about to bungee jump- everything in your mind and body are telling you "Don't Do IT" but once you jump and have faith it works out fine. So I hope.

Thursday, December 12, 2013

PoppySeed Biscotti(gluten-free, dairy-free, soy-free, corn-free, )

In the past I would have not likely made biscotti for my holiday cookie tray, but with going gluten free (and grown up kids now) we have added biscotti into the cookie lineup. Honestly, a cup of tea or coffee and biscotti? You just cannot go wrong. They are one of the easiest cookies to throw together.

We opted for poppyseed but you could add nuts, dried cranberries or raisins.. whatever it is you like in yours. Normally I would glaze with a lemon glaze to go with the poppyseed or if I was gifting them but plain and simple works perfectly for us. If you can have almonds they would be delicious! My directions are a bit iffy on this one.. I don't usually measure for biscotti, I tend to "wing" it.. I know, bad habit! The trick is just making the dough firm enough to hold it's shape(like a long brick) and no firmer.. gf dough is a bit tricky. Too moist would be better then too dry.


INGREDIENTS:

1 1/2 cup all-purpose gluten-free flour
1 teaspoon guar gum
1/2 cup sugar
1/3 cup poppyseeds
3/4 teaspoon baking powder
1/2 teaspoon salt
2 eggs
3 1/2 tablespoons Palm shortening(room temperature)
1 1/2 teaspoon vanilla extract(almond if you aren't corn or nut allergic)

DIRECTIONS
Preheat oven to 350 degrees F. Line your baking sheet with parchment paper and set aside.

In a bowl, add all purpose gluten-free flour, sugar, baking powder, and salt. Mix together the ingredients. Now mix in shortening and eggs. Lastly add vanilla extract. allow to rest for 10 minutes.
Dough should be rather loose. It should pat together and hold a form but if it spreads when you try to shape it then it needs a bit more flour. If it crumbles it needs a bit of water or more vanilla extract.

Place the dough in the center of the baking sheet and form into a long and relatively flat log with your hands.(Think brick)

Bake for about 22-25 minutes or until the outside of the log is lightly browned
.
Remove and let sit for a few minutes. Slice loaf between 1/4-inch to 1/2-inch thick(thinner will bake more evenly). Arrange the slices, cut side down on the baking sheet and return to the oven. Bake for 10-12 minutes. Remove and let cool for 10 minutes.
If any slices are still too soft you can place them in the dehydrator till dry or back in a low temp oven to dry them.
Store airtight.

Monday, December 9, 2013

Thank You MitoAction!

MitoAction has started a fund to help advocate for Mito families who have been falsely accused of child abuse.


I think I can safely say, the Mito Population says THANK YOU!


Mito Patients daily face family,Drs, friends, even other Mito Patients who constantly accuse them of "faking" their symptoms or disease. It unfortunately is one of the biggest struggles and stigma's of having such an insidious and poorly understood disease.


While I understand the need to provide more research and educational opportunities to Specialists and other Medical Professionals, how many Mito Families will be destroyed and abandoned while we wait years for the diagnosis of Mito to be understood or accepted?


Thankfully, now that the Cancer researchers and other "big disease" Researchers have found that our mitochondria profoundly affect nearly every disease known to man, the research dollars are flooding in(Pharma Companies are dumping serious dollars into research,finally!) and it is time to give donations that previously went to research instead should be given directly to impact the quality of life for Mito patients and their families that care for them.


Today the donations need to go more directly to support the families who are suffering then toward research. Families who are being falsely accused. Who often lose the support of the Mito Community out of fear that to support a falsely accused family may cause unwanted scrutiny on their own families. It has become too acceptable and too common in our Community to abandon a family once they have been falsely accused- that must stop.

Justina had a genetic diagnosis(the current gold standard)there is also a documented family history.(via news,friends,and even a letter sent to BCH via MitoAction) She was being cared for by one of the World's Best Mitochondrial Disease Specialists- if this can happen to her and her family and she was 14, NO ONE is safe. It could happen to ANY Mito family.


Do you want your donation dollars to go more directly to helping a Mito Patient? Today, not a couple years from now via educating Drs who really ought to know better anyway?


Donate to MitoAction:


Your donation to MitoAction's advocacy campaign will be used for the sole purpose of supporting families in need of legal advocacy and to support research and education efforts specific to the task of changing the current problem of parents losing their rights to care for their children due to unwarranted accusations of medical abuse.

For every donation made, MitoAction pledges to create a task force to address this issue and help families around the country in need. Our fundraising goal to support this effort is $50,000. As a supporter, you will also receive regular updates about this project and be invited to contribute regularly. This is a community issue that can only be addressed by a wide base of support!

Thank you for your support!



When I saw this announcement from MitoAction, I felt instant relief. For the last couple years I have watched in horror as family after family has been accused, then support from the Mito community is cut from them, and then our large Non-profits did not have any support systems in place. The very fact that the organizations would not get involved was percieved by me(others?) as them agreeing that the family was guilty. It was a horrible feeling and such a sense of paranoia and panic. The lack of intervention by our leaders was adding fuel to the fire. It not only did not make the problem go away it made it bigger. We all know the saying "secrets make you sick" and this past few years in the Mito Community has proven that saying to me as too close to the truth then even I would care to admit.

To the many families that have "come out" and shared their stories of being falsely accused because their child was diagnosed with Mito, thank you! Thank you for being brave enough to stand on your own and fight this!

To the many families who have been brave enough to support other Mito families suffering these false allegations, Thank you! It is delightful to see families supporting families in the best and the worst of times. Those who are true advocates for Mito families get my applause.

MitoAction has a terrific track record of making every single penny donated to them count. No fancy offices, or big salaries- they put every penny toward advocating for the entire Mito Community.

If you can even donate 5 dollars? It WILL MAKE A DIFFERENCE!

Donate to MitoAction HERE-



I don't know Justina's family. I don't know most of the families falsely accused. What I do know is they are suffering. I feel a deep responsibility to do what I can to ease the stigma of having Mito.

In America, we are Innocent until proven Guilty. With a healthy support system I think many of these families would never face this horror in the first place.

Friday, December 6, 2013

Justina still held by Boston Children's Hospital

Another court date in 5 days, still hope she can be home with her family for Christmas. 5 more days of declining health..



What really gets me about this story? It doesn't matter who your Dr is.. Doesn't matter how connected you think they are, Doesn't matter if you have all the faith in the world in your Mito Specialist, this could happen to your family too.


It just takes 1 Dr(nurse) for this nightmare to happen to you too.


Your diagnosis, your team of Specialists- mean NOTHING to many other Drs., to Hospitals. It seems as though the rest of world of Medicine doesn't think your Mito is real, to the point they won't recognize a genetic diagnosis.. shocking and alarming. It makes us even wonder,is Mito real? Even though we see findings on a report, when we are questioned often and watch Drs. disregard that it exists, it makes the patients question the validity of their disease.


I am more grateful then ever that Abby hasn't needed or could not tolerate any of the Mito treatments.


The thought of needing the ER, even one where the Mito Specialist has rights, makes me cringe. No patient is safe.


How can this happen here in the US? Why are our Mito Specialists ignored by CPS, by the courts? How can a genetically proven disease be ignored?


Even worse? The majority of Mito patients don't even have a gene identified- if they can do this to Justina and reports indicated she has been genetically diagnosed, what about the majority of children with Mito who have no gene identified?


Hoping that a 5 day turn around for the next court date indicates that Justina is on her way home.

Tuesday, December 3, 2013

Snowball Cookies(gluten free, dairy free, soy free,nut-free,seed-free, corn-free, chemical and color free.)





Easy and delicious.

Abby can eat a ton of these cookies(so can I!!!). We were worried that when we made them gluten free and everything else free they would lose their magic, but she gave them a double thumbs up. We have never used nuts in our version so maybe that made removing the rest of the allergens a little bit easier for us.


Ingredients:
1 cup palm shortening, room temperature.
1/2 cup confectioner’s sugar(homemade or corn-free)
1 1/2 tsp. vanilla(homemade)
1 egg
2 1/2cups GF Flour Mix
1 1/2 tsp guar Gum
3/4 tsp salt


Directions:

Heat oven to 400. Mix thoroughly shortening, sugar, egg & vanilla. Work in flour and salt until the dough holds together. Cover & chill for 1 hour or so. Shape dough into 1-inch balls(they are a little crumbly but I worked them as they warmed in my hand they shaped better). Place on ungreased baking sheet. Bake for 7-9 minutes or until set, but not brown(mine cracked a bit when finished which the sugar covers). I only needed to keep them in for 8 1/2 minutes. Let cookies cool slightly – 5-10 minutes. While still warm, roll cookies in powdered sugar. Set on cooling rack to complete cooling. Roll again in sugar once they are cool.

Monday, December 2, 2013

Buckwheat




I think I have covered the nutritional value of buckwheat on previous posts. We have started eating the groats vs just the flour. A little hard for Abby to digest still, but on a good day if they are very tender she is doing pretty good with them. For as much as we love rice, we admit that the white rice Abby does best with, isn't a very stellar source of nutrition. When her gut is flared, we depend on it. When her gut is in good shape we are trying very hard to make sure that we push her a little to digest some good stuff. Buckwheat is a high fiber food which are notoriously hard for Abby to handle. A small serving on a good day though seems to be doing all right. Moderation is key for Abby.

We LOVE the flavor. As Abby says, "From your first bite,if you have never had it before, it is comforting,like eating something you are sure you had before, and cannot believe you found again!" Mild, nutty, it appeals to all 4 of us which really makes a hit for me.

From The Worlds Healthiest Foods website:

"Buckwheat is a very good source of manganese and a good source of magnesium, copper, and dietary fiber. Buckwheat contains two flavonoids with significant health-promoting actions: rutin and quercitin. The protein in buckwheat is a high quality protein, containing all eight essential amino acids, including lysine."



Easy Buckwheat Kasha


1 cup buckwheat groats
2 cups chicken broth/bone broth(water is fine)
1 diced onion
1/2 cup peas(or any veggy, mushrooms are frequently used)
salt,pepper
1/2 teaspoon ground sage


1) Toast you your groats. In a large dry frying pan on med-high heat pour in the groats. Stir them around until they are "toasted" about 5 minutes. You will notice they kind of "pop" open.. nothing dramatic, but it becomes clear when they are done.


2)saute onion

3)Throw everything into a saucepan. Cover with lid and cook till the groats have absorbed all the liquid- about 15-25 minutes.


You can throw anything in with the buckwheat. Treat it like you would rice,millet or quinoa.

We have toasted it and added to muffins, cookies, granola. We have roughly ground it with millet and teff and made a delicious hot cereal.



Saturday, November 30, 2013

“Overmedicalizing” Do Drs. have a God Complex?

Like many, I have been following this case via the few media prints I can find. These are just my opinions on what might or might not have happened based on what I have read thus far. I am still hoping this isn't as bad as it seems to be, but I am losing hope. This looks very very bad for patients suffering from Mitochondrial Disease and other rare diseases.



As everyone follows the case of Justina,(15 year old jailed in the mental ward of BCH's for 10 months now because the Drs felt the mito was a false diagnosis and the child was actually mentally ill as the primary,not Mito)we have all noted the term “overmedicalizing” that has been used as justification to jail a 15 year old child in a mental institute.


1) Boston Children's accuses Justina's family of “overmedicalizing” , but who prescribed the medications? Who approved the multiple surgeries? Who prescribed the surgeries? From what we have learned in the media, Justina had been seen by the same set of Drs. for years. She had been seen by Drs who are accredited and licensed by the same boards that license Boston Children's Hospital's Drs. Genetic testing had confirmed her diagnosis(less then 20 percent are genetically proven today). I consider myself as a reasonably intelligent person, but when it comes to medicine I trust the Drs. Doctors are the ones with the education,training and experience to diagnose and treat,not the parents. Parents are just parents and not Drs. How are we, the parents supposed to know whether a Dr. is right or wrong? If a Dr. tell's me my leg is broken, should I hobble over to another hospital to make sure? Is there a 1-800 number for Boston Children's I am suppose to call so they can make the final decision on my broken leg? Apparently they feel no one should accept a diagnosis unless it comes from them. If the Dr. makes a decision their peers don't like, should the parent and patient be punished? What is that oath again? "First, do no Harm."


2)How often are we told as Parents that we need to "trust" the judgement of our children's Drs, because they "know" better then we do? So, these parents trust the Drs and then another set of Drs. punish and destroy a child and a perfectly healthy family because they did exactly what we are all told to do? How often are we told NOT to Dr. hop? Meaning, don't go running around getting 2nd and 3rd and 4th opinions because you are accused of Dr shopping or diagnosis shopping? These parents by all accounts did EXACTLY what every Dr.(except BCH Drs.) see's as ideal for patient care, continuity of care.


3) What is “overmedicalizing” ? Is it defined somewhere?


4) I am baffled. From what I am reading and my opinion on this,it seems a parent is told by a Dr or a multiple team of Drs.(all licensed by the same association mind you)that their child is sick. The Drs. then prescribe treatment A,B, and C. Another Dr. doesn't agree so instead of going to the licensing Association or FDA(who approves the medical viability of these treatments)or even the prescribing Dr for confirmation, they basically tell the parents they are bad for listening and following the orders of Drs who happen to have very good reputations.. Insanity.

5) A child that was previously doing well is now very ill. A child who previously had the comfort of home and family now has 4 cold walls and no love, no home. The only thing Boston Children's has accomplished? They are abusing the child in my opinion,surely the rapid decline of health was not their intention of an outcome from changing her diagnosis?. The child is clearly in failing health under their care. The child has had her family and friends ripped from her when in fact all the medical research indicates that patients will ALWAYS fare better with a close supportive family.


6) The burning question, "Why?" Could the Drs. be so petty, so arrogant that they are willing to run around destroying families, and children to get their point across that they "think" their medical opinion is the only valid one and if you are treated anywhere else in the Country the diagnosis is WRONG until Boston Children's rubber stamps it? Insane right? But it is sounding more and more like that is exactly what is happening.

7) If you have read my blog, you know I have very strong feelings about “overmedicalizing” . I happen to agree that there are cases of “overmedicalizing” in the Mito population. I have seen it. Most of you have seen it too. I blame the IDIOT DRS not the parents. However, that is not looking like the case at all here.(overmedicalizing is rare even in the mito population) If the Doctors disagree with the diagnosis, shouldn't they go to the Dr? Shouldn't they go to the Medical board? How can parents be too uneducated to understand medicine but be held accountable for the treating Drs medical decisions? Why on earth jail a child to make their point? It is back firing on them,I suspect they thought they could "prove" that Justina was perfectly healthy- instead the longer she is in their care the sicker she gets.. How could any Judge decide that they are doing a good job caring for her? I mean, the very fact that she is getting worse is clinical EVIDENCE that she was sick to begin with and that whatever treatments she had been receiving were clearly doing a much better job keeping her stable then the mental hospital is doing.. But I am just a parent.

8) Justina needs to go home. The Judge needs to follow the law. CPS should be ashamed. Everyday I see another news article of children starving, murdered, abused.. Instead of intervening and saving children that need saving, they decided to partner with a hospital to "make a point". From all appearances and accounts thus far,they have sat there and watched Justina's health fail and yet do nothing to protect her, they seem to be more concerned about supporting the Hospital then the child. They are not doing their job. The Drs. have failed. The Judge failed. CPS has failed. Justina has suffered horribly. Send Justina home. Who knows how their "treatment" has permanently damaged her health?


A case of God Complex? From what we are learning from the Media,it might be the only reason.. Frightening.

A parent is no longer the decision maker for our children's health. For our Children's education. Is the future full of Justina's? If our children become sick, do we automatically lose our parental rights?

As always just my opinion. If this was the first case like this, I might automatically agree with Boston Children's- after all they heal children right? Unfortunately, this is one of too many to count.

As parents face Drs. appointments next week trying to find help for their sick children, who do they trust? Which Drs. are about politics before medicine, and which ones put our children's health before politics? Houston, Seattle, Boston, Los Angeles, - no where is safe. A GI Specialist, a Mito Specialist, a Pediatrician, a Family Dr- there is no way to know which one might falsely accuse you.








Friday, November 29, 2013

Corn-free, Gluten-free, Dairy-free, Nut-free, Chemical-free, etc. Thanksgiving Dinner



All turned out well! Another allergy free/reaction free Holiday!


(Chicken not Turkey for Abby)

(gluten free stuffing,made bread earlier in the week, cubed and dehdrated. Bone broth, onion,sage, salt,pepper and an egg blended in to help bind)

(success! french cut and blanched organic green beans,homemade cream of mushroom dairy free etc made a week or two ago and frozen, freshly fried french onion bits- very happy with this one!)

(of course the traditional gf yeast rolls from Living Without,and twice baked potato's made with homemade coconut yogurt cheese and egg yolk- sounds terrible, but they were delicious!)

(of course a spoonful of my jellied cranberries made clean as well )

We had chickpea pie(instead of pecan)and sweet potato pie, and one pumpkin with a wheat crust for Sara! We will be eating Thanksgiving for at least a couple days! Except for Abby who isn't able to eat many leftovers.

A lot of work to do it allergy/reaction free for Abby- but compared to what the Pilgrims had to do? We still got off easy!

Time to start planning Christmas Dinner!

Thursday, November 28, 2013

Thankful

I am thankful for Derek,Sara and Abby(and my two spoiled poodles too!)

I am thankful that Abby is showing signs of being on a much better path.

I am thankful I was right and there is more then the Mito at fault.

I am thankful we have found Specialists we trust who encourage optimism.

I am thankful for food that is free of corn, air that is free of corn, heck even toilet paper free of corn!

I am thankful for my real/but not real facebook family.

I am thankful for smart,really smart Drs, even when we have to travel.

I am thankful for my families willingness to eat my funky food.

I am thankful I am healthy enough to take care of my family.




As I reflect I realize this had been a great year for our family. For the first time in a couple years I have days when I am actually worried about something other then Abby's health. I worry about the direction our Country is moving, but I am thankful for all the Patriots who are working hard to protect our rights and freedoms. I am thankful for our Active duty military, and Veterans for their willingness to give their lives if they must for our Country.


I am just especially thankful that I was right- I KNEW something could be done for Abby.. I just had to be stubborn enough and smart enough to know that there are no absolutes. That just 1 Dr or 2 or even 3 could not possibly know it all,it really does take a village. Hard work, hope and persistence I am thankful for this year. I am thankful that I am hopeful again this year that we will see some improvements. I am thankful that I won't accept a bad prognosis. I believe that a bad prognosis is a self fulfilling kind of thing, if you think you are dying? You are dying. I am so Thankful that Abby,with our support, choses to live and heal.




Wednesday, November 27, 2013

Carob Powder Fudge(dairy free, chocolate free, soy-free, nut-free, )



Not bad for our first attempt. Over the years I have always made fudge using chocolate chips(Fantasy fudge)and it really is no fail with the chips and marshmallow fluff. Making "old fashioned" fudge is definitely a challenge!

Where I went wrong, the recipe says to quit mixing when it starts to become flat instead of shiny, I miscalculated and my fudge set up hard and fast! It is a little dry.. but, hey for the zillion substitutions? Not bad. I should have stopped stirring once the fluff,shortening and vanilla was well mixed.. lesson learned.

In our house the first batch of fudge of the season is always at T-day. We tend to wait to put up a tree(we use fake, but still they get dusty etc) till closer to Christmas. So last year when we had no "chocolate" fudge to start off the holiday season? It was missed after being a tradition for 20 years! So a little dry? With carob instead of cocoa? Coconut milk instead of dairy? Palm shortening instead of butter? We are thrilled to have the tradition rolling again. 2o years from now, I will be a pro at this alternative. :-)


The first carob powder we tried we aren't sure was safe for Abby. If there was a reaction, it was mild and building. She was also trying it while she wasn't feeling her best. We think the carob was safe, but some sort of potential cross contamination. This is round two of the carob with a different brand. Worst case, she will be able to have it once in a blue moon and will avoid any building reaction, but I try very hard to not feed her anything that can cause reactions. Hard to say no to a safe chocolate alternative though, so we are hoping we can find a safe carob powder so I don't feel any guilt and she is not tempted.

CAROB FUDGE


Ingredients:
3 cups sugar(domino's)
3/4 cup carob powder(there is at least 1 cocoa powder that is corn-free)
1/4 teaspoon salt
1-1/2 cups fullfat coconut milk(many use arroy-D)
1/4 cup palm shortening(now using Tropical Traditions)
1 cup marshmallow fluff(I shared a recipe a couple weeks ago where I used honey for this I used Lyles in the fluff instead of honey.)
1 teaspoon vanilla extract

Directions

1. Line 8-or 9-inch square pan with foil, extending foil over edges of pan. grease foil.

2. Mix sugar, carob and salt in heavy 4-quart saucepan; stir in coconut milk. Cook over medium heat, stirring constantly, until mixture comes to full rolling boil. Boil, without stirring, until mixture reaches 234°F on candy thermometer

3. Remove from heat. Add palm shortening, marshmallow fluff and vanilla. DO NOT STIR the ingredients in,just let them be on top. Cool at room temperature to 110°F (lukewarm). Beat with wooden spoon until fudge thickens and just begins to lose some of its gloss. Quickly spread in prepared pan; cool completely. Cut into squares. Store in tightly covered container at room temperature. About 36 pieces or 1-3/4 pounds.

Tuesday, November 26, 2013

Don't go anywhere near Boston Children's Hospital with a Child with Mitochondrial Disease

IT is kidnapping. It is appalling. Mitochondrial Disease is a genetic disorder. It is covered by the National Institute of Health. It is covered by Social Security. It is covered by private and public Insurance. It is taught in medical school.

There are probably a lot of reasons Drs. would rather literally destroy a family then admit it is real, too many to cover quickly.


This is not just a Boston issue- it happens in Houston, Los Angeles, Seattle, Portland- anywhere there is a large hospital(that receives government funds as well) you will find stories like this..It happens at hospitals that have a Mitochondrial Disease Specialist on staff.


Why are they fighting to disprove a proven disease? Why are they stealing the children. Why would they rather call it mental illness then Autism, Panda's, Mito? Fear. It is an Epidemic. 1 out 5 Children in America are now chronically ill. We have more Drs, Specialists, and Hospitals then ever- you would think the number of sick kids would go down with all this topnotch care, right? But instead, we have seen the number of children with life shattering illnesses SKYROCKET. Talk about a huge failure on the part of the medical community- they like to brush those type of epidemic numbers under the rug.


Glen Beck did a piece on the Boston Hospital kidnapping. Watch it and share. Protect your children and grandchildren. We now live in a Country where a Dr, Hospital, State have far more rights to your child then you do.



Glen Beck Video Link




First they came for the Socialists, and I did not speak out--
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out--
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out--
Because I was not a Jew.

Then they came for me--and there was no one left to speak for me.

Spicy Cabbage and Potato's.

Cabbage is one of those things you either like, or don't like. I have always appreciated it but Derek is just now appreciating it. For Abby it comes down to whether it is a good day or bad day as it can be hard to digest. Most of the time I think it is often the smell of cabbage or kraut that keeps folks away, it really can be stinky! We were impressed that the spices cooked in this dish shut down the stink- it did not develop that strong cabbage odor! That alone makes it a star dish. Plus it is cheap, and really is nutritious-

CABBAGE:(Nutrition and You Website)
Fresh cabbage is an excellent source of natural antioxidant, vitamin C. Provides 36.6 mg or about 61% of RDA per 100 g. Regular consumption of foods rich in vitamin C helps the body develop resistance against infectious agents and scavenge harmful, pro-inflammatory free radicals.

Total antioxidant strength measured in terms of oxygen radical absorbance capacity (ORAC value) is 508 ┬Ámol TE/100 g. Red cabbages contain more antioxidant value, 2252 ┬Ámol TE/100 g.

It is also rich in essential vitamins such as pantothenic acid (vitamin B-5), pyridoxine (vitamin B-6) and thiamin (vitamin B-1). These vitamins are essential in the sense that our body requires them from external sources to replenish.

It also contains a adequate amount of minerals like potassium, manganese, iron, and magnesium. Potassium is an important component of cell and body fluids that helps controlling heart rate and blood pressure. Manganese is used by the body as a co-factor for the antioxidant enzyme, superoxide dismutase. Iron is required for the red blood cell formation.
Cabbage is a very good source of vitamin K, provides about 63% of RDA levels. Vitamin-K has the potential role in bone metabolism by promoting osteotrophic activity in them. So enough vitamin K in the diet gives you healthy bones. In addition, vitamin-K also has established role in curing Alzheimer's disease patients by limiting neuronal damage in their brain.

Best yet? It is cheap and fresh this time of year. It is low calorie and a great way to keep all system's rolling.(fiber).

The other items in the pic are; Naan(posted recipe months ago), saffron rice(rice recipe on the biryani recipe I also posted), then a lentil curry with chicken- the color is from roasted red pepper sauce instead of tomato.)

The weather has been awful here in Houston- it is like living in Seattle in the winter! YUCK. A spicy, hot meal of true comfort food was exactly what was needed.






1/2 cabbage, chopped
2 potatoes, peeled and diced
1 diced onion
2 red chilis(I used dried plus added dried to my garam masala blend, we like heat)
1 tbsp ginger peeled finely minced
3 cloves finely minced garlic
1 tsp cumin seeds
1 tsp turmeric
1 tsp red chili powder
1/2 tsp cumin powder
1/2 tsp garam masala powder(lots a different blends we toast and grind our blend fresh for each meal)
2 tbsp oil(grapeseed)
salt to taste
(many recipes that are similar call for cilantro or coriander, Abby and Sara are allergic so we do not use, feel free to throw some in, the flavors just get better!)

To Make:

Heat oil in a pan. Add cumin seeds(whole seeds taste much different then the powder,good!) and red chilis. Once they splutter add the onions. Saute till transluscent and add the turmeric, ginger and garlic . Saute till raw smell goes away. Add potatoes and cabbage. Saute till potatoes are almost done. Add all of the spices and stir a few times. Cook till potatoes are done, stirring occasionally. That’s it!

Thursday, November 21, 2013

70 percent Accuracy New Blood Test for Mitochondrial Disease-

A new blood test for serum fibroblast growth factor 21 is claiming to accurately diagnose Mitochondrial Disease in 70 percent tested!


Hands down that would be more accurate then any MRI of the brain, any genetic testing, any metabolic testing, any muscle biopsy. No more guess work or one Specialist thinking you have Mito but the next disagreeing. Families could hunt for the real disease causing the damage, or know for certain it really is mitochondrial disease. This is simply fabulous! I wonder if it could confirm our hunch that Abby's depletion is just a symptom or secondary and not Primary? Sign us up! Sooner we can dump that diagnosis the lighter my heart will be.


All of the patients who are at "suspected" or are just clinically diagnosed could take this test and know for sure what they are dealing with.. that is, if it is as amazing as it sounds!


Fingers crossed!

Brisbane Times


Breakthrough in hunt to diagnose mitochondrial disease
Date
November 20, 2013
Read later
Amy Corderoy
Amy Corderoy
Health Editor, Sydney Morning Herald

Julie Egan.
Long search: After suffering from strange symptoms for years, Julie Egan has been diagnosed with mitochondrial disease. Photo: Tamara Dean
Julie Egan cannot walk more than 10 steps before feeling like she might collapse with exhaustion. The 52-year-old has had countless operations on her legs, and takes at least 21 tablets a day.

But she is happy. Because for the first time in her life she understands what mysterious condition has been causing her to suffer everything from muscle weakness to stomach problems for as long as she can remember.

Three years ago, doctors finally discovered she had mitochondrial disease. ''When you know there is a reason for the things that are happening to you, you find a way to deal with them and you can move on,'' she said.

Mitochondria are tiny parts inside every cell that are vital to our survival; they allow our bodies to convert food into energy as well as helping cells stay healthy.

Advertisement
When they stop working, they can cause anything from mild deafness to seizures or muscle fatigue, said the head of neurology and director of neurogenetics at Royal North Shore Hospital, Carolyn Sue.

''Mitochondrial disease can basically masquerade as almost anything,'' she said. ''Our mitochondria can also stop working properly for a number of different reasons, from mutations in its DNA, which is separate from the rest of our DNA, or from other genetic disorders that can impact on its function.''

Because of this, Ms Egan's experience of countless tests and painful muscle biopsies is common. But new research undertaken by Professor Sue, and published on Tuesday in the journal Neurology, could change that.

She has discovered a simple blood test can be used to diagnose the disease in about 70 per cent of cases. ''This is a huge step forward,'' she said.

LINK for the rest of the Story

Monday, November 18, 2013

MSG=Mito Toxic

Link to page via the UMDF:

MSG
MSG (monosodium glutamate) has for years been known to cause migraine headaches in otherwise healthy individuals, and may trigger these events in susceptible people with mitochondrial disease. MSG is frequently added to Chinese (and other Asian) foods, and is also found in high levels of dried and canned soup. Read the label and avoid MSG if there is any sensitivity.

MSG TRUTH Website:
"If you have the heart to keep reading after learning about the Codex Alimentarius, in addition to what is on the Codex list, most fast food establishments should be avoided - the worst offender by far is KFC®. It should become obvious as well, that the foods most likely to give someone an MSG reaction at ANY restaurant are: CHICKEN and SAUSAGE products, RANCH dressing, PARMESAN items, GRAVY, and DIPPING SAUCES and fries with any kind of seasoning on them except plain salt. FLAVORED salty snack chips - ESPECIALLY Doritos® and Cheetos® and items with cheese powder added.
At regular restaurants, you want to avoid PARMESAN encrusted ANYTHING, SOUPS, CEASAR salad, FISH SAUCE or EXTRACT, SOY SAUCE, BOARS HEAD® COLD CUTS and beef jerky (usually made with soy sauce) and anything that comes out of a can. Go to restaurants that make things from scratch - you can ask what is in food and also ask for special items without the offending ingredients. You WILL be glad you spoke up BEFORE you eat the wrong thing. DON'T smother your choice in the parmesan cheese at the table either- Parmesan cheese is 1% straight MSG by weight.

At your friend's and relatives' homes - the hardest place to avoid MSG - avoid your aunt's "secret" recipe, anything that has Accent® in it, anything with a boullion cube or meat extract or "seasoning" packet, the Latino seasoning Goya Sazon®, Lawry's® seasoning salt, Gravy Master®, tuna with "broth" or hydrolyzed or autolysed ANYTHING on the label, potato chip dip or hamburgers with Lipton's® Onion Soup Mix in them, Vegetable dips with Knorr® vegetable soup mix in it, Italian foods smothered in Parmesan cheese, Hamburger Helper, canned soups - especially Progresso® and tomato or mushroom soup, the "green bean casserole" heck, ANY casserole. Check packages of prepared baked items and avoid any with soy protein, casein, wheat gluten, malted barley, and non-fat dried milk as an ingredient. Avoid aspartame, Nutrasweet®, "diet" drinks and artificially sweetened desserts. If you aren't sure - just eat the raw vegetables but don't dip them - eat them plain. Skip the hotdogs and cold cuts altogether unless you know they are safe. Have some iced tea and add plain sugar and fresh lemon. BRING foods you can eat so you aren't tempted and weak when your relatives ask why you aren't eating their prized recipe - and you cave in and poison yourself just to make them happy. Avoid Ultra-pasteurized dairy products, cheeses, cream, and half and half with carageenan added. Look for plain Pasteurized whole milk to put in your plain coffee and avoid low fat and non-fat milk - because low fat dairy products usually have dried, high-free glutamate, non-fat dried milk added to boost the protein content. "

PLEASE visit MSG TRUTH to find out where the poison is hiding, and remember, even the UMDF posted a warning about MSG.



MSG is in your McDonalds, Burger King, Pizza Hut, Chinese Food, and hiding in a zillion other places. A little Clip about the golden arches-

"McDonald's® updated 03-11-13
Although McDonald's has "cleaned their labels" of added MSG, they overuse autolyzed yeast, hydrolyzed protein, and natural flavors which they admit contain wheat and dairy hydrolysates (thanks to the allergen labeling law) - which contain free glutamate and act exactly like MSG.
Angus Beef Seasoning
Big Mac sauce
Ranch dressings and dipping sauces
Most Chicken Products including
Chicken McNuggets
Chicken Selects
Crispy Chicken Filet
Chili Lime Tortilla Strips
Hash Browns
French Fries - the "seasoning" added to the oil the fries are precooked in contains hydrolzyed wheat and milk
The "seasoning" is made from beef, wheat and milk, processed to break down the proteins into free amino acids like glutamate. US laws allow "natural flavoring" to consist of "protein hydrolysates" containing free glutamic acid. That's why they do it - to free glutamate to act like MSG so they can declare a "clean label" while misleading the consumer.

Two disturbing things about McDonald's menu is the copious use of phosphates - a food additive that was widely used to prepare before a colonoscopy but is now not used because it was found to damage the kidneys. It pulls water from the body and can cause diarrhea. Also, hydrogenated fats were everywhere on this menu. McDonalds may be bragging about cleaning up their labels by hiding MSG, but they have a long way to go to get off this avoid list.

Don't just take our word for it. Here is the latest McDonalds® Ingredient Webpage"

The MSG Truth also gives information on KFC, Pizza Hut, Burger King and many other chains that have MSG that sensitive Mito Patients should avoid.




MSG is TOXIC to sensitive Mitochondrial Disease Patients.



Don't eat it. Don't feed it to your kids, and if they advertise it is MSG Free? Don't just believe them they may not directly add the MSG but some of the products they use may already have MSG added. Or it could be another compound that has "natural glutamate' which once processed is often as damaging.

Did you know that vaccines have MSG? (MSG TRUTH) How about chewable vitamins and over the counter medicines? IF they have MSG or the processed equivalent, it is BAD BAD BAD for your sensitive Mitochondria.

You can help your mitochondria be as healthy as it can be by avoiding the packaged, processed food industry. Try it, your Mitochondria are going to thank you! It isn't as hard as the American Manufacturing world tries to make you think.


Believe me, just two years ago I blissfully ate all this poison and fed it to Abby. I even asked the Drs. if it could be contributing, most of them said, no, not contributing. Looking back I almost wonder if they just figured she was a goner, so why bother? Thankfully, by removing all of it her health has stabilized the progression has slowed significantly. Even if it had not, I could not bring myself to knowingly feed her something that was likely making her sicker. That would be like denying them extra fluids, or rest- In my mind, to feed Abby any of the processed and toxic foods is the same as abuse since we know MSG is toxic to her mitochondria.

As patients we do have some control.. We can control the food that we decide goes into our body. We can decide which medicines. We can make good decisions about our mitochondria, and it DOES MAKE A DIFFERENCE.



Friday, November 15, 2013

Season's Change, as does Abby

The IVIg fiasco seemed to cause a bunch of changes in Abby, so the theory that it might "reset" her was reasonably accurate.


However, like the seasons, some changes I would rather not see.


The good: She can eat SALMON!! This HUGE, amazing, terrific, delightful, essential. Salmon has B, D, Omega's - really for what Abby struggles with there are very few foods that could be as perfect as Salmon as an ideal food for Abby.


The good: The energy level is higher. I am calling this good because fatigue and lack of energy is "bad." The increase in energy is great and not so great. Her "mind" is more awake and wants to do more, but so far her body is not really wanting to join in :-) This can get frustrating and hard to handle. We are trying to roll with it, and hope her little muscles will join in and take the hint and catch up. There are days the increase borders on OCD and then days where there seems to be no increase.. It causes her to not be able to sleep for more then a couple hours at a time which is hard on her. Yet, when she is awake? She is plugged in, more herself, just more alive.. So we are calling this "good." Just need to find a balance.


The Bad: Dental work is not going so great.. she is reacting to more of the local's, more quickly and more severely. The reactions drag her down for days.


The Bad: Her body has decided it hates the resin tooth fillings. Anywhere the resin touches her gums, there is inflammation. This is a "new" thing so we have no idea if it is temporary, or something that is planning to stick around- we would like it to go away- sooner then later.

The Bad: The toenails had another little brown out- based on where the beau's lines lie, it was caused by the IVIg SubQ. There is some odd tissue around the cuticle which we think is more granuloma's. We keep hoping it will go away(did not last time, but hey, we are optimists)without anyone having to cut into her feet again.

The Bad: Before where she would often have building or delayed reactions, she is now immediate- instant, and worse with each exposure to the zillion things her body hates. On one hand this isn't entirely bad. IT makes it gobs easier to figure out what she is reacting to, but we have noted a lot more burning in her mouth and throat and instant racing heart and crazy BP reactions- which are bad. I am not sure she is more sensitive then she was before, more she is reacting more quickly and differently. It takes about the same amount of time to recover from an exposure still though.


Was the IVIg worth trying? Yes. Will we try again? Still uncertain about that. She see's the immunologist again next week and hopefully he will help us understand these changes and whether we should consider them "good" or "bad" in the whole big picture.


I love having Abby more present though. That foggy brain fatigue made her seem distant, more faded. I would rather have her present and irritated and annoyed her body won't keep up. After all, as I age I have experienced that fate myself, my head still says I can do everything I did 20 years ago, yet my body says, no thanks! :-) It is something I can understand and relate to, and share my new learned coping skills with her. It is a lot more "normal", and we like anything that is normal, even being cranky.


Despite our worries that we have lost a tiny bit of ground this year, change equals hope for us. The "reset" wasn't all good, but if she can be "reset" at all, well that is hopeful.

We are prepared for the holidays. Thanksgiving should be a food affair that rivals Martha Stewart's table. We have been planning for weeks-we find the challenge of not only subtituting safe ingredients entertaining, but making our Abby safe menu taste better then the original highly entertaining.

As 2014 approaches- we will embrace it with optimism. This summer was rough on us, and I admit, I was losing some hope. The improvements that food had brought were stopping. The constant state of allergic reactions were leaving her dull and sleepy. Nothing like a little adrenalin to keep us on our toes. The scary fever, the scary reactions have forced us to wake up and start thinking and problem solving again.



2014 might be the year we untangle the mystery of Abby- and we are ready for the hard work.

Thursday, November 14, 2013

Cooling Talcum Powder-


One of the concerns in our home is not just corn in food but in other products. Not just Abby's products but ours. Powders 99.9 percent of the time contain cornstarch. A little bit of that powder circulating in the air or on our bodies can cause a reaction in Abby.

Living in Houston having a little cooling powder for the feet can seem like a necessity at times to stay fresh all day. This worked perfectly to replace the corny store bought version. You could easily use arrowroot, or other fine starch. I used some glutenous rice flour because I have a surplus right now and figured why not? Worked just fine.

Cooling Foot and Body Powder Recipe

You will need:
1 cup powdered tapioca starch(or arrowroot)
1 cup super fine rice flour

1 teaspoon powdered ginger
10 drops tea tree essential oil
10 drops lavender essential oil
5 drops peppermint oil
5 drops eucalyptus oil

Combine powders and mix well.

Add oils to absorbent cotton pad.

I put the pad in the bottom of the jar and dropped the oil on it, then put the mixed dried ingredients on top.

Add powder mix, shake or stir well, allow to sit 24 hours, shake or stir again, allow to sit another 24 hours, shake or stir powder, remove pad and discard, place powder into containers, it is ready to use.

Same idea for any other scent you would like.


Rose powder etc.

Wednesday, November 13, 2013

Cranberry Jelly(Easy method)

So which one is store bought and which one is homemade?

Last year's Cranberry Jelly post was a redhot mess.


I tried to follow my own recipe and was frustrated!!! :-) So below I have put together a MUCH easier to follow recipe.


I love canned cranberry jelly. I cannot stand whole berries or bits in my jelly. I hate it when someone serves up some fancy spiced bowl of berries, it just seems wrong, and they are rarely sweet enough to make me happy. I LIKE the lines on the wobbly mass proving it came straight from the can! As a general rule, I prefer homemade foods, and since we make everything from scratch for Abby it has been a good thing generally speaking. I cannot however face a Thanksgiving without my jiggly, gelatinous cranberry jelly that is more sweet then tart. I have zero guilt about it since learning to make my own to avoid all the corn. (Ingredients are usually cranberry,corn syrup and citric acid, though some brands have even more.)


Here is a much easier, and clearer recipe.

WARNING:Some who are corn allergic report reactions to fresh cranberries, it can be a major issue no matter the brand. We soak our cranberries for about 30 minutes in cool water with baking soda and then rinse well, for Abby that is enough since she eats one serving once a year. Also, many with Mast Cell disorders react to cranberries, so proceed with caution.

CRANBERRY JELLY RECIPE:

1 bag(12-16 ounces) fresh cranberries

juice of 1 lemon(aprox 1/4 cup a little less is fine)

granulated sugar.

water



1) place 1 cup water and cranberries in pot.

2) boil for 5 minutes. The berries will pop and be getting soft and mushy.

3)pour berries and the water into sieve or fine metal strainer over a bowl. Push berries through till just skins and bits remain in strainer or sieve, don't forget to scrap the outside of the strainer, some good thick and smooth cranberry puree will be hiding there.

4) The smooth puree will be fairly thick not quite as thick as a pudding.

5) measure the puree.

6) measure an equal amount of sugar to the amount of puree you have.(example: 1 cup cranberry puree means 1 cup granulated sugar)

7) pour puree, sugar and lemon juice back into pot.

8) Bring to a simmer and cook for 3 minutes.

9) pour into bowl, jar or can to gel. Place in fridge.

10) After at least 4 hours(preferably overnight) serve.

That easy. I have increased the amount of sugar so there was more sugar then puree (by about 1/4 cup) and it still gels fine.

For the sake of proving this recipe looks just like the canned store bought version I cleaned out a can and filled it with the cranberry to set it. Even slurped out of the can with that same gross noise!


You will know it is going to gel because by the time you pour the jelly into the container of choice, the cranberry will be gelling in the bottom and sides of the pot.


Tuesday, November 12, 2013

Paluszki- The PERFECT Gluten Free Cracker.



As I have had to learn to cook for Abby one of the tricks I have found is to explore various cultures for their foods. Unfortunately most western cooking contains a lot of ingredients she reacts to, and often can be difficult to sub out and replace and still appreciate the end product.

My latest obsession is reading Polish and Russian recipes. One of the staples for Abby is potato and we have found that she does very well with buckwheat and millet as well. Which makes Polish and Russian food a great place to explore for some new food idea's.

I dragged home a Polish cookbook from half priced books(I just cannot bring myself to buy a kindle, I NEED to have the book in my hands). One of the first recipes that caught my eye was Paluszki. Based on the recipe I suspect this was supposed to be more biscuit then cracker but after trying one soft and then one crunchy, we fell in love with the thinner more crisp option. The fact that the recipe called for mashed potato is what convinced me to try them first. I have found that when I can add either mashed potato or mashed yucca to various gluten free baked goods, we are always pleased with the texture and flavor.

I used palm shortening instead of butter, and of course gluten free flour instead of wheat flour. I rolled these very very thin and reduced the oven temperature from 425 to 375 in order to get a nice crisp cracker without over browning.

The softer version were also fabulous, but like many recipes for Paluszki suggest, they are best hot out of the oven. The crackers are more practical, and just better for us.

Gluten-free crackers have been a challenge for me. Being limited in fats hasn't helped. Though we like our crackers we have previously made, they tend to get too hard instead of crisp. Sometimes I wonder how long my teeth can handle eating my gluten free crackers because they are often almost too hard for me to really enjoy.

These were light, airy, crisp. Immediately you could taste a slight potato flavor(think pringles!) and despite being so crisp and light these could handle dips well. I use caraway in a number of recipes though I am conservative about it. When I saw the heavy amount of caraway on these I had some concerns it would be just too much for us, however we were surprised to find that the heavy sprinkle of caraway made these just beyond amazing. Abby and I think we might try some other herbs in the future, but hands down the caraway really make these spectacular!


Gluten-Free Caraway Crackers:

7 Tablespoons palm shortening(spectrum or tropical traditions)
1 1/3 cup potatoes, cooked & mashed
1 cup gluten free all purpose flour
1 egg, beaten
1/2 teaspoon salt(pink himalayan is what we use)
1 tablespoon caraway seed
salt



Caraway Gluten Free Crackers:


Directions:


Preheat oven to 375°F.

Combine palm shortening, potato and gf flour to form dough, and knead until a ball forms.

Refrigerate for 30 minutes, then roll out very thinly. I rolled between 2 sheets of parchment that I sprinkled with a healthy amount of gf flour.


brush with beaten egg.


Sprinkle with salt and caraway seeds. I used a pizza cutter and cut long narrow crackers. Place crackers still on the parchment onto a cookie sheet.(you can try to transfer just the crackers to a greased cookie sheet, but rolled so thin I found it was impossible and they baked perfectly on the parchment.)


Bake until golden 20-25 minutes(depends on how thin you rolled. You can remove the edge pieces and continue baking the center pieces if the edges brown too much)

When you remove these from the oven, immediately recut along your lines to make sure they will come apart clean.


Sunday, November 10, 2013

French Fried Onions(Gluten- free, Corn-free, soy-free, nut-free, dairy-free) CopyCat Durkee or French's French Fried Onions



I am determined to make a clean allergy-free version of the infamous green bean casserole for the holidays this year. It is just WRONG not to have it on the table. With these delicate and delicious french fried onions to top it? Perfection. I have a cream of mushroom soup that I have conquered that I will share in a couple days as well. We are ready for the best Turkey-Day Ever(Well, roast chicken day since Abby reacts to Turkey)!!! That is if you don't eat all of these before they make it to the green bean casserole. For once, using gluten-free flour actually makes a better product then using wheat. When making that delicious delicate tempura batter you will see it often calls for tapioca starch or potato starch- they are key to a delicate and perfect crunch. I use both potato starch and tapioca in my gf flour blend(most blends do) and it was absolutely perfect.

Not a perfect copy of the canned ones that are full of chemicals,preservatives, corn, gluten, a little different. In their own way though these just are that much better.



1 whole Large Onion
2 cups Thinned coconut yogurt(should be like buttermilk for consistency)(or coconut milk with a bit ACV for a tang)
2 cups All-purpose gluten free Flour
1 Tablespoon Pink Himalayan Salt
1/4 teaspoon Cayenne Pepper
2 teaspoons granulated sugar
1 quart (to 2 Quarts) grapeseed Oil
Black Pepper To Taste


Peel onion and cut into quarters.(I did in half too but the pieces are bigger then the French's pieces)

Slice onion very thin(think paper thin). Place in a baking dish and cover with thinned coconut yogurt and soak for at least an hour. Make sure you loosen them into pieces and don't just leave them in sections, will help you when you dredge in your gf flour.

Combine dry ingredients and set aside.

Heat oil to 375 degrees.

Grab a handful of onions(let them drip for a second)then toss into the flour mixture, tap to shake off excess(important or they clump), and place in oil(carefully to avoid burns!). Fry for a few minutes and remove as soon as golden brown.(too dark and they tend to get bitter)Place on paper lined plate to drain.

Repeat until onions are all fried.


(See how thin these slices are? Thinner the better. These were my cut in half batch that were great, but to replicate the French's you should quarter)
 
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