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.

Thursday, July 31, 2014

Yeast and Gluten free, Fake Rye Bread(gluten free,cornfree, rice free, potato free, soy free, yeast free, dairy free, gum free)

(egg salad on rye with a side of microwave potato chips)

A lot of folks with Mast and/or multiple allergies not only have issues with corn but also with potato and rice! I am incredibly grateful that Abby does great with rice and potato but Derek doesn't! He really tries to minimize both in his diet though a bit now and then is okay,but I am trying hard to avoid it altogether when cooking for him. OF course Abby is now yeast free too so I am having to either make 2 different loaves of bread or I need to start figuring out a few recipes that would be safe for both of them. I have noticed too that many with as many food issues as Abby suffers from also really struggle with the various gums used in gluten free baked goods. I have been using psyllium husk powder off and on and so far so good. Plus, I think at least for some applications(especially bread) it is superior to guar gum.

So this loaf is potato free, rice free, yeast free, dairy free, gluten free and corn free(corn free enough for Abby)

I have always loved rye bread. Black Russian and Jewish Rye are favorites. Adds a huge punch of flavor and complexity to any sandwich you are wanting, and the leftover bread made into cubes for stuffing couldn't be tastier. It toasts really well and some toasted fake rye with a side of kraut? Perfect snack for me!(no kraut for Abby though)

Another advantage beyond flavor with this loaf is the nutrition. Both Teff and Buckwheat are superior in providing a huge punch of nutrition. Caraway and Dill also have a surprisingly big dose of good nutrition. Caraway contain fiber,A,C, B's,copper,manganese,and much more. They are a little powerhouse of goodness! Dill too has a great profile including vitamin A and shares similar properties to garlic for it's bacteria regulating effects.

This is very dense, heavier(very heavy) and very flavorful. Also very quick and easy to throw together in a pinch. With my "plain" irish soda bread I can usually get good height,and a lighter crumb but this just doesn't get the same height, the trade off is more nutrition and terrific flavor.
If you have a favorite Irish Soda bread recipe, use it. Just swap 1/2 cup of your favorite flour blend with 1/2 cup buckwheat. Add some dill and caraway. Add a tablespoon of blackstrap molasses and top with caraway seeds.

My family is not fond of whole seeds in their bread. Plus, gluten free breads just tend to crumble more, I find the whole seeds make that issue worse. I grind them quickly(ninja or spice grinder)and add them in. Another perk of ground caraway is the flavor is pronounced throughout the bread.


1 cup Teff(Teff company)
1/2 cup buckwheat(I grind buckwheat groats from the international market in the WonderMill)
1/2 cup tapioca starch
1 Tablespoon psyllium husk powder(using the NOW brand, no noted reaction but not confident either)
2 teaspoons baking powder(homemade)
1/2 teaspoon salt(pink himalayan)
1/2 teaspoon dill weed
1 1/2 teaspoon fresh ground caraway(I buy whole spices as much as possible and grind my own)
2 Tablespoons grapeseed oil(TJ's and a few other brands seem to be safe for Abby)
1 Tablespoon Braggs Apple Cider vinegar(or choice of safe vinegars another option is a Tablespoon of pickle juice)
2 eggs(more and more folks have found they do better with local eggs fed no corn and no soy)
1 Tablespoon blackstrap molasses(plantation brand)
1 Tablespoon raw honey
1 cup homemade coconut milk(or your choice of milk)
2 teaspoons baking soda

preheat oven to 375.


Mix Teff,buckwheat, tapioca,psyllium,baking powder,salt,dill and caraway.


Now mix in grapeseed oil, vinegar, eggs,molasses, honey and coconut milk. mix well.


Lastly mix in baking soda. Place the soft dough immediately in a 6 inch round pan(I use a 6 inch to force the dough to go up higher)that has been greased and floured.

With a wet hand pat the top into a smooth dome.

Sprinkle with a bit of flour.

Use a knife and cut an X onto the top(I go pretty deep to help the center bake properly)

Sprinkle the top with a few whole caraway seeds if wanted.

Bake for 30-35 minutes at 375. The loaf will sound hollow. If in doubt, test the center with a knife.

Store tightly wrapped.

Tuesday, July 29, 2014

Can you heal from Mito? Why Not?

You join a Mito support group. You visit the UMDF or MitoAction. You get the news that you have Mito or your child. What are the first things you learn about Mito?


It is Progressive.


There is no cure.

Only treatments for the secondary issues.


Infections can kill.


Comfort care

Quality over quantity.



You end up grieving. Life as you know it, or as you hoped for your child is over. Every cold your child gets terrorizes you as you worry if this will cause regression.. Every story from another family where their child progresses leaves you sweating and unable to sleep.. unable to breath worrying that your child is next. Mito becomes the monster in the shadows waiting to snatch your child's life from you. It is honestly the worst I have been through as a parent.. I was never one to check on sleeping children just to make sure they were fine, but I found myself checking on a sleeping teen, just so I could be reassured that Mito monster wasn't lurking.


Along this journey you see some "normal" people Drs and Specialists. When you say you or your child has Mito you get an earful.

"you aren't sick enough"

"Who the heck diagnosed you with "THAT"??"

"No, you don't have that"

"rolling of the Dr. eye's"

"Let me refer you to someone to straighten this out"


So, you hit a point in the journey and wonder: " Do I have it, or Not?"

If I have it there is no cure, there is no treatment, it is progressive.....

If I don't have it that means I have something else that no one can figure out or treat and the unknown is again in play.


My question is, why can't you have Mito but find a cure? Why does Mito "have" to be progressive? Why not have Mito and shoot for quantity over quality?


I think most of the Mito data we know is based on the more "severe" patients with Mito.

Today though, so so many are being diagnosed with much milder symptoms. Daily I read a blog of yet another person with a depletion living much better then what the medical literature indicates as possible. Or Leigh's patients alive and living full lives in their 20's..


So you have Mito- so what?
You can let a small amount of knowledge define you, or you can recognize that very little is known about Mito.

People who believe they are going to die from cancer,tend to die from cancer. Those who believe they will live, tend to be the ones more likely to have the better outcomes.


If you go to a cancer support group you are going to find those having tough days but you are also going to find folks who are focused on healing. Stage 4 liver cancer or pancreas cancer(labeled terminal) and they don't talk about comfort care and just "accepting their fate" at least not all of them, many of them are hopeful, focused on healing, optimistic. Fighting. Finding their own way. Getting second,third, and fourth opinions. Most Drs. aren't going to counsel a cancer patient to just "accept" their disease, heck no! They are going to encourage you to heal.

I bet though years ago before Drs. learned about treatments for cancer, they may have treated cancer patients like Mito patients.. no cure meant no hope.. Thankfully that has changed. It will change for Mito patients too.


As parents we can chose which way to deal with Mito. I wish I could trust any one Dr, that they knew what was best for Abby, but they don't and we don't trust just 1 or even 2(or even 3 or 4). When you have a diagnosis where a room full of Drs. cannot agree? You have to second guess every single bit of "advice" or a drs. "opinion". It is harder now for us, Abby is "grown.". We live very carefully to protect her health, to keep her "bucket" empty, to help her manage her spoons.. she now decides how to use her spoons or when it is worth it to fill her bucket. She is the one who plans her food to include all the nutrition she can fit in and actually digest.. she is the one who avoids any food that would put her GI health at risk. She is the one who decides which Drs are worth her energy and which one's aren't. I am grateful she too believes with care, with effort, with work there is hope. Her efforts inspire me. She lives with that biopsy finding and with the belief she will get better. So it can be done. After the diagnosis and the bad news it was very hard on her.. but she stepped back and decided she could live her way or change her life to fit some symptoms in a research paper- she gracefully picked her way. Hope. When she "believed" what she was told was her diagnosis, she did get worse. When she no longer believed in that diagnosis? She started stabilizing. The mind is a very powerful thing, we learned that we can never underestimate the power of the mind. You have to believe in Hope to have Hope.


Parenting a child who is clearly sick but undiagnosed bites. Believe me, we did it. School sucks- they like a nice tidy diagnosis. They have a hard time accepting your child cannot run laps but can be in the gifted program. If there are no meds, or no tubes they cannot be sick seems to be the frequent opinion. Families don't get it. Friends don't get it. Drs. worst of all, don't get it.

But, hands down, what being undiagnosed means is Hope. You are encouraged to work harder to feel better. You are encouraged to stay optimistic. To be good to your body. To eat better. To get better. Frustrating no doubt, when you are constantly told you cannot be sick because your labs are fine.. or Specialists act like you are wasting their time(they are getting paid) ..but at least no one is stealing your hope.

With Mito- well, you need to "accept" you aren't getting better. You need to "adapt". You need to work on Quality vs Quantity. You need to teach others there is no cure. You need to remember it is progressive. You need to remember you have other children who are normal and "do the best you can " for the sick one but make sure you keep a normal family. Which means you or your sick child need to adapt to the normal healthy family vs the healthy normal family adapting to the sick.


Why can't you have both? Why can't you have Mito and get better? Why can't you have Mito and heal? Why can't you have Mito and work hard recovering?

Wouldn't it be great if when you or your child were diagnosed you were met by " you have hope" " you can heal" "you can live fully" .. if you were met by the best case and not the worst case? Support groups full of stories of improvement vs progression? How about a printout that gives Mito Patients both hope and reality? Honestly, after awhile you start to feel like an abused puppy in an SPCA commercial- showing a sad,sorrowful, puppy or kitten that somehow manages to pull on our heart strings and opens our purses.. great for fundraising, but not so great for our self image.


Realistically, there are many who progress. But there are many who stay stable indefinitely.

When Abby was 16-18 months the Drs. thought she had IFSH - progressive muscular dystrophy- the infantile form with a pretty raw prognosis. I remember crying and being very upset.. totally normal. But Derek said, that is BS, "She will be fine". Every time I fretted about another delayed milestone he would say "don't worry, she will be fine.". We found a PT who also said " don't raise the disease, raise your daughter." She too said " She will be fine." She did get better. We finally found out she did not have that awful disease. She had a garden variety "undefined congenital myopathy."(This was before anyone besides a couple people even knew such a thing as Mito existed) For whatever reason be it the change in diet, moving across the Country, outgrowing it, she did get better. Derek was right, she was fine.

So, if it was the Mito the whole time? She got better and had Mito. That means she can get better again. That means others can get better.

You can have Mito and heal. You can have Mito and push for longevity. Life isn't easy for anyone. Why focus on comfort care when you can focus on a future? If you have Mito it is going to be harder, but why not make it harder working to heal instead making it hard waiting to die?

So be it.

I know there are some patients that are just too sick. Those patients break all our hearts. For some with Mito it is sadly progressive and for some terminal. But, for those that aren't? You have hope, just there isn't anyone talking about it.


You can chose.

Humans are pretty superior critters. :-) We have the ability overcome incredible odds, to change the odds, to learn, to heal, to have hope.














Friday, July 25, 2014

Peach Pudding Cake(dairy free, gluten free, corn free, soy free, egg free!)



Pudding cakes are a favorite in our house. They are so easy. Pretty much no-fail. Never dry. Being they are generally made in a 8 x8 just about the right size. Being egg free isn't a necessity in our house. There are times when Abby needs to avoid them but in general as long as we find safe eggs for her she does fine. I do know though in lots of households with food allergies eggs can be a huge issue, so felt good to share an egg-free dessert.


My personal favorite is a gingerbread pudding cake- there simply isn't anything better. The chocolate version is best known and then the lemon version is pretty well known too.


I was flipping through an old vintage cookbook and found a recipe for a fresh fruit pudding cake. I had not seen a fresh fruit version before. How could I resist?


We opted for fresh peaches. You could use any fruit(according to the recipe.) I did add a little ginger and allspice to my peaches- I never pass an opportunity to add spices or herbs they are such a terrific hidden source of nutrition.

The top is crisp and crunchy from the sugar and potato starch, the center is moist cake and the bottom full of a sweet "pudding" and peaches. Like the very best of a pie,cake, and cobbler all blended into one. The only downfall is that it isn't the prettiest, but I think you could add a spoonful of coconut whip cream or coconut vanilla ice cream? Might make it a little prettier, but who needs pretty when something tastes that good?


This of course was not a gluten-free recipe but since the recipe only called for 1 cup of all purpose flour I could sub straight across for 1 cup of gluten free. As long as the measurement for flour is 1 cup or less you can generally straight across swap. I am half tempted to try making this with just a Teff and tapioca starch blend, I suspect it might work.


2 cups fresh peaches(I cut big chunks you could use any safe fruit)
1 3/4 cup sugar
3 tablespoons grapeseed oil(or coconut oil would work )
1 1/2 teaspoons baking powder
1/4 teaspoon salt
1/2 cup coconut milk(or milk of your choice)
1 cup gluten free flour
1 Tablespoon potato starch
2/3 cup boiling water.

Preheat oven to 375

Grease an 8x8 baking pan.

Place fresh fruit in bottom of pan(I sprinkled a bit of ginger and allspice on mine)

In bowl mix 3/4 cup sugar(reserving 1 cup for later in the recipe),oil, baking powder,salt,milk,and flour together. This will be thick like a brownie batter. Spread/spoon over the fruit.

In another bowl mix remaining 1 cup sugar with the 1 Tablespoon potato starch. Sprinkle over the batter.

Lastly gently pour boiling water over the top.

Bake for 45 minutes at 375.

Best Served warm.

Wednesday, July 23, 2014

July.


For the past 4-5 months Abby has really struggled with catching her breath when she is moving around. It has happened before over the years but this was pretty bad. The pulse ox was showing even down to the high 70's a couple times. Granted, the finger pulse ox isn't the most accurate but accurate enough that we have been concerned. She saw the cardiologist and the heart was just fine, as always. We were considering a visit to a pulmonologist but over the last couple weeks it has definitely improved. We "think" that all these drops when moving around were probably triggered by that last SubQ treatment, I know 4 months, but the only thing that makes any sense. I cannot tell you how badly the SubQ trials messed up her entire body. She still has a bruise on her thigh from the first injection last AUGUST- no kidding. We are still seeing drops to low 90's regularly but that is no big deal, as soon as she sits or lays down it comes right back up so she is saved from having to see yet another Dr.

Latest greatest is a funky rash. More like broken blood vessels.. anywhere her seams on her clothes or if she scratches her skin or anything really, even the pillows pressed against her the wrong way, gets a patch of almost hickey looking marks. Lovely. Blood work has looked fine. So a mystery. Her skin is just that delicate I guess.

Racing heart issues seem to be happening more frequently, but usually not for too long or too high(160 is the highest) just short frequent bouts.. a reaction or a cold can start them off or a degree warmer, or weather changes... She has pretty much had a cold every few days over the last couple months(even she cannot always tell if it is a cold or allergies but a lot of colds). Bothersome she has caught so many despite our efforts to reduce her germ exposure, but very impressive she fights them all off quickly without any concern. I swear chicken soup really does work! :-)


Toenails are almost grown back out again- whew!


She has lost quite a few foods, nothing to panic about, but after holding pretty steady on foods for a long time or actually adding foods this really has me bothered. She has plenty to pick from still and no loss of her good protein foods but I am really hoping she doesn't lose anymore. I always have a strong desire to introduce either new foods or lost foods and am having to fight that urge and stick to what we know she tolerates and I rotate the iffy foods very carefully trying to avoid losing anymore.


Her shrinking feet actually look a bit better, more relaxed. Some massaging and because of her losing her breath she hasn't been using them as much. Apparently they needed a break. She is walking more and more on the outside of her feet and her poor little pinky toes are folded under and getting walked on, but it hasn't slowed her down walking and her gait looks as great as ever. The calluses are really getting out of control on the sides of her feet, her feet are rebelling. :-)


More mild headaches we think are just all allergy related or muscle tension. Her necks been bothering her with pulled muscles and she has TMJ which adds to it. Nothing a nap doesn't fix thankfully.

Her teeth- getting close to repairing them all. She has been too sick to go in for work once or twice over the winter months, and 1 visit she got lockjaw from the local and did not get the work done(though a good cleaning where they could reach.) I think Abby said she has 5 left to restore. So we are thrilled, unfortunately the few teeth she had that seemed free of enamel failure are now showing signs of failure. The local that works the best also avoids immediate reactions but she has delayed reactions. So she is pretty miserable for a week after each visit. We are so pleased with her Dentist. They have been incredibly kind and depending on how Abby is feeling we have had to reschedule appts and they are great with that... they could not be sweeter to Abby either, which of course makes us all happy.

As far as her kidneys? They have been behaving much better. Frankly, I think it is just because we are very aware now what will trigger a reaction that causes the proteinuria. She has had some bad days, but over all the last couple months have been much better as far as her kidneys are concerned. That too we are very happy about. If they do act up(like yesterday and today) they settle down with in a couple days. Today her poor face was so swollen when she woke up. Regardless, we feel a lot more confident that they are benefiting from our efforts to reduce any stressors on her body.

Fatigue plus pain- well those are just part of it. She hasn't hibernated as much but most days are just tiring. Good days she can shower(shower benches are great!), let me wash her hair and get her teeth brushed and body lotion(vitamin D oil) - the other days? She does what she can. That whole spoon theory has gotten easier for her, she knows how to spread her energy. We have had a ton of shows and movies to watch this summer and generally I see smiles and laughing daily- so no complaints, right? She has had many days where she is able to help fold laundry or empty the dishwasher,I always fuss her to do something fun with her energy, but she would rather help out, have I said lately how lucky I am to have daughters that are amazing humans? On the bad days when she needs us to bring her drinks or a plate she always feels bad, I don't think she understands how grateful I am to be able to help her too. I think the days that bother her most are the ones where she is achy(deep "bone" pain) and she isn't able to sleep through it.. 2 hours asleep and 1 or 2 awake and not feeling so great aren't exactly fun. But, they don't last and her body cycles through them.

Since she is home all the time we have gone a little nuts over night clothes.. well beyond nuts I suppose, I really should quit buying them but it has become a hobby. Abby is particularly fond of the vintage hollywood era gowns. So we hunt them down and order and she has overflowing drawers of really fun and comfy night clothes. If you can, you do is our opinion! :-) When it comes to getting to wear Pj's all day and be comfortable it is definitely a cup half full kind of thing and I find it impossible to not encourage the fun.


Life is pretty good right now. We still don't think the Mito is the primary, and still feel that the "reactions" be that they are mast related or something unknown metabolic, are more likely the primary issue. We know it is likely the mito depletion that slows her down and is responsible for a lot of what we see at this point,but we are still very hopeful that if we continue to provide the best, least stressful environment, things can stay good or get better. There are of course a million things I "wish" she could do, but there are so many things she can do that we don't fixate on what she cannot do, heck, my body is fine and there are zillions of things I cannot do and have no desire to do. You are only missing out if you don't enjoy what you already have. I am continually grateful that Derek is able to make a great living which allows me to be home with Abby. I know not many are able to be home with their kids as much as we are able to and I do see it as a huge gift that not only are we able to give her what she wants and needs, but that I enjoy being with my family a whole lot more then starbucks, the gym, etc. :-) I am truly the lucky one. No one knows their children as well as a Mother.

Friday, July 18, 2014

If it isn't Good for Healthy People, Why feed it to the Sick?

Corn Syrup solids- up to 50-60 percent in Elemental formulas that we feed to really sick people that are unable to eat anything at all by mouth.


We KNOW corn syrup is BAD BAD for healthy people, so why in the world do they pack the sick people full of it?


We KNOW Antibiotics are BAD BAD for healthy people unless absolutely necessary, so why do we give them long term and frequently to really sick people???


We KNOW Roundup(active ingredient) is very BAD BAD for healthy people and is a neurotoxin, so why would you feed(those corn syrup solids came from GMO corn which is grown in roundup) it to Sick people????


We KNOW that TPN even for a very short period in a generally healthy person is BAD BAD on their body, so why full time with sick people??



We KNOW vaccines have side effects that can hurt HEALTHY people, so why double up with the Sick???



We KNOW hospitals are BAD BAD for germs even for HEALTHY people, so why drag the really sick into that environment constantly???



We KNOW pollution is BAD BAD for HEALTHY people, so why are all the Major Medical Centers built in the center of city where there is the most pollution?

We KNOW gathering many people closely together ups the odds they will transmit diseases, so why do Hospitals gather all the sick people closely together??


We KNOW that for healthy people "use it lose it applies" yet with sick people it doesn't?


We KNOW school days are long,tiring and full of germs for our HEALTHY children, so why send sick kids with bad energy and poor immune systems to school?


I could go on and on. But when you think about it, much of what we do for sick people to make them "better" will eventually make them worse. I don't get the logic.


There has to be a better way.

Some of these things are simply because there aren't any better ways yet. Some of these things are driven by making money. Some of these things were created and at the time were good, but since then we have found they are BAD.


We all do counter- intuitive actions daily. Sick or Healthy we are often behaving in ways that are contrary to the best result.


Time for change.

Thursday, July 17, 2014

Homemade Crispy Treats- gluten free, dairy free, corn-free, soy free, chemical and color free.



I had honestly given up ever being able to recreate the Rice Krispie treat. Without rice Krispies(Not corn -free or chemical free)the treats I made just did not work. I mean, they stuck together but that is about all I could say positive about them.


I tried puffed rice, puffed millet, puffed lotus, you name it I tried it. The marshmallow part I conquered but the texture just never stood up to the original. Also not being able to use butter the flavor was lacking. Just too many things wrong to accept them.


A couple weeks ago I read a post on the Healthy Home Economist about making Rice Crispies. She used regular rice which she dried partially and then fried. I decided what the heck, let's give it a try. I wasn't unhappy with the end results, but yet again they just did not work as far as texture in the rice crispy treats. It was a little time consuming. I don't fry much and I don't fry well so I really struggled to get the oil the right temperature, then having to flip them to get them evenly fried and then drained(mine were a little greasy) and then broken apart when cooled. Though these did not work for crispy treats the way we wanted them to, I can bet we will find many uses for these down the road. They were absolutely terrific for snacking and a 1000 times better then plain puffed rice.


Had to be an easier way.


Remember a couple weeks ago when I used the glutinous rice flakes to make fake oatmeal for oatmeal cookies? Well I decided to fry those- Wow! The second I scattered them across the oil(I used grapeseed oil but coconut oil should work) they fluffed up and very evenly.No need to flip them. No sticking together. Just took a second and I used a slotted spoon to scoop them out onto a plate covered in paper. I saved hours of time using the flakes and they are the CLOSEST thing to rice crispies I have found yet. In a matter of minutes I had six cups of rice crispies(once you take them out they actually snap and crackle as they cool like the real thing!) .

Today I made a batch of marshmallow fluff(Abby just doesn't do well with agar and cannot tolerate gelatin so fluff works well) and about 6 cups of the fried flakes. I warmed the fluff in the microwave for a few and stirred in the fried rice flakes, patted(grease your hand!) them into a pan and FINALLY something close enough to the original that everyone is very pleased. We did not miss the butter at all, since the crispies were fried it had enough "fat" to make it all work nicely. I did add a dash of salt to my marshmallow fluff which helped increase the flavor- perfect.

Finally after 3 years of failed attempts. I feel redeemed. :-)

I have seen flattened rice called poha on Amazon but I am not sure if it is the same thing or will perform the same. I know I have seen the poha at my local Indie/Paki market and I plan on picking up a bag just to see if it the same.

Picture below of the whole rice fried based on the Healthy Home Economist vs the fried glutinous rice flakes

Just the glutinous rice flakes below.


Tuesday, July 8, 2014

Vocab

Transgenerational



nutraceuticals



microvesicles



Endothelial dysfunction


Extracellular



Numts


Encephalopathy


Amelogenesis


ectodermal dysplasias


Glyphosate


Vinclozolin


Hypermethylation


Metastable epialleles


xenobiotic chemicals


epigenetic toxicology

Sunday, July 6, 2014

No Oats Oatmeal Cookies(gluten free, dairy free, nut free, corn-free, soy free)



It has been a couple years since we have had oatmeal. Major reaction for Abby, and out of all the grain's she lost, we have missed oats the most. Oatmeal cookies, Oatmeal crisps, Oatmeal no-bake cookies used to be big time favorites around here.

For the last few trips to my favorite Asian Market I have eyed the "Glutinous Rice Flakes." This week I finally threw them in my cart figuring I could find something to do with them. When I started looking them up on google I found they are also called "Pinipig" in the Philippines. Abby's stomach usually does great with recipes that originate in the Philippines so I was excited!

Reading about them I learned it is a young green rice that is flattened. You will also find them dyed green but skip those- just get the natural ones.

It is important to "toast." It releases more flavor and crisps them wonderfully. They remind me of a cross between oats and rice crispies when they have been toasted. Right out of the bag they were a little too hard and I worried they would not soften enough with baking.

We are hooked- completely totally hooked on these and I have every intention of loading my pantry with bags of this delicious alternative to oats. I can see eating a bowl toasted with milk for a cereal.. maybe sprinkling toasted ones into a carob or chocolate coating for crunch.. and of course no-bake cookies are now back into play with these.

I ended up not toasting enough so had to use some coconut flakes with this batch- worked out very well. You could use just 3 cups of the toasted rice flakes. Or your favorite gluten free oatmeal cookie recipe- just sub straight across for the oats.

Before adding to the dough they are crispy and though not as crispy as rice crispies they do remind us of them. Once baked into the cookie they have some crisp left but get a nice chew to them very much like oats.

We no longer need oats and honestly we like the texture and flavor of these flakes even better!



2 1/2 cups toasted glutinous rice flakes (pinipig)
1/2 cup toasted coconut flakes(tropical traditions)
1 3/4 cups gf all purpose flour
½ tsp salt(we use pink himalayan- salt is tough for the corn allergic and other sensitivities find one that works for you.)
1 tsp baking soda
1 tsp allspice(or cinnamon if you tolerate it)
½ tsp cloves
¼ cup white sugar(Domino's)
1 cup brown sugar(Domino's)
1 cup palm shortening(Tropical Traditions or Spectrum)
2 large eggs
1 tsp vanilla(homemade with potato or grape vodka)
1 ½ cups raisins(I used some dried cherries and figs I chopped and added instead)

Preheat oven to 350 degrees. Line a cookie sheet with parchment paper.

Cream shortening and sugars. Add eggs and vanilla. Stir in flour,salt,spices and soda. Lastly, stir in rice flakes and raisins.


TIP: I suggest doing a "trial" cookie. If it flattens too much add 1/4 cup more flour. Depending on the ratio's of starch in your flour mix results will vary.

Place a couple inches apart(they spread)on a parchment lined cookie sheet.


Bake cookies at 350 for 8-10 minutes or till lightly browned. Allow to cool before removing from tray.

Wednesday, July 2, 2014

Your Mitochondria are What You EAT,BREATH,and WEAR.

Recently it was PROVEN that environmental toxins are linked to Autism.


Last year it was PROVEN that for some Autism is caused by Mitochondrial Dysfunction.


So, we don't need to be told that for some, Mito is linked to Environmental Toxins. Doesn't take much of a leap to make the connection. Turns out at least for some with Mito it is possible it might have been prevented.

It has already been proven that some medications cause mitochondrial disease(they are still finding more and more that could be problematic for our mitochondria). Vaccines have side effects.


What you eat, what you breath, what you wear.


No more blaming those pesky bad genes,(for at least some)because now we KNOW we can be doing something to prevent it or at the least, slow it.


Here is a quick link to get you started, it will give you a couple of toxins to immediately remove.


The Huffington Post - The Link between Autism and 10 common Toxins




Can we undo the damage?



I don't know. But we are doing our best to remove toxins that "may" have caused it or made it worse.

It is like some hideous nightmare to think I unknowingly feed her food that was coated in fungicides,pesticides, insecticides(pretty much everything in a grocery store these days)that could have been the culprit behind her getting so much worse. I cannot imagine feeding her any of it now, I know better- we have to stop feeding the toxins to our children and selves.


It is the hardest thing I have ever tried to do. The toxins are in our food, water, air, clothing,soaps,lotions,building supplies- everywhere.

What choice do we have? Now that we know the stuff is making her worse(if not the cause) I would be insane to allow it back in, at least until we know more- I don't ever want to look back and wonder if it was all my fault for not being willing to self educate myself.


We just try to improve 1 item at a time. Glass(lead free of course!)instead of plastic. Ceramic instead of no-stick, NO city water(fluoride), homemade deo's, homemade lotions, no enriched foods(vitamins are grown on Corn which is grown in RoundUp which is a mitotoxin), etc.


We aren't even halfway there in our home and we have been plugging away for a couple years.


For now, Abby is still sick, but not getting rapidly sicker like she was before we removed all the toxins. For lack of a better term, pretty stable, as long as she isn't sick, or exposed to triggers or gets too tired. It makes every effort well worth it and keeps me determined to keep improving her food and environment, it can only help.

For now that is what we have to do, and glad to do it. Anything for a chance.


Thursday, June 26, 2014

My Kid is Sicker then Yours-

If you have a child with ANY type of illness you have dealt with this before. Heck even chicken poxes or strep throat. You share that your child missed 5 days of school because they caught the pox, and someone will say, " oh that is bad, but my son missed 12 days! You are so lucky!"

We all do it. It can serve a good purpose, it does make me grateful. When I am feeling pretty sad about the extra challenges Abby faces, I read about someone who "instead of 5 days had it for 12" and suddenly, instead of being sad I am so freaking grateful that Abby's restrictions are so minimal. We are lucky! With food and environmental changes and avoiding medicines and staying homebound she is pretty stable- that is far more then many with Mito or Mast and many other chronic illnesses will ever be able to have.


But sometimes it is just wrong.


Try to voice an opinion and you will get shutdown with the "my child is sicker, so I KNOW more then you" sometimes said that bluntly but more often insinuated. The only message you will hear is, " you have no right to be as sad,scared,angry,or opinionated because you know nothing" (Jon Snow! sorry could not resist)


Total baloney. Really WRONG. Unfair. Cruel. Usually done in absolute innocence.


And boy am I Guilty of doing it.



Last year the youngest son of one of my oldest friends developed asthma symptoms. I mean the wake you up in the middle of the night choking and gaging..those moments where you fear for their lives, the not able to run around.. the steroids needed kind of breathing issues.


She and her husband were TERRIFIED. Shocked, scared, bewildered, confused, sleepless nights, guilt, uncertain of his future, not sure who to trust.


My first couple thoughts? Why are they so upset, it is JUST asthma.


Pretty terrible of me right?

I grew up in a home where either my brother or I were struck with days and days of not being able to breath. Like it was yesterday I can remember laying as still as I possibly could and telling myself to breath as a child, certain that each breath I fought for could be my very last. For hours and sometimes days. They did not have the preventative or breathing treatments they have today. During that era(many years ago) they still often blamed asthma on the child because they were too high strung, too sensitive. For me, it was Normal. My Dad has severe childhood asthma. My brother and I learned to deal with it, what choice did we have?

When my oldest was born and around a year old she too developed severe asthma? It was scary, but to my surprise they had all sorts of medicines they could treat her with, when I took her in and they sent us to the ER and spent days in the hospital each year because her breathing was so bad, I was shocked, she was not any worse then what I or my brother had suffered. For me, asthma was NORMAL.


Add to that Abby's life long journey of zero clarity, of never knowing "why" her body is so different.


You would think that would have made me empathetic. Understanding. Compassionate.

NOPE, to my horror I caught myself trying to figure out why she was so upset. SHAME ON ME.


When I stopped to think about it I did talk to her about it and realized a couple things.


Her family had never dealt with a childhood chronic life altering disease process. In that snapshot of his childhood that diagnosis was as bad as when we heard the word Mito and Abby in the same sentence.

She was as scared, as confused, as horrified, as helpless, as determined, as fearful, as I had ever been. She had to deal with Drs. that treated her exactly like we had experienced, the type of Dr. that acted like you were wasting their time, the Drs. who felt there was nothing wrong, the Drs. who blamed the parent or the patient..

To her the inhaler was as despicable as the thought of a feeding tube.

To her watching him sit quietly doing a breathing treatment was the SAME as me watching Abby having to ask for help to stand up.

To her knowing something was medically wrong with her child was no different then knowing something is medically wrong with Abby.

To her his future was as unknown as Abby's.

To her she lost just as much sleep as I had.

Get it? The emotions were IDENTICAL.


In the world of chronic disease I see other parents do the same thing I did daily. It is wrong.

I won't ever know what it is like to have a child who will never develop an adult mind, but then that parent will never watch their child develop a brilliant adult mind but have a body too weak to use it. To a parent with a child who will never marry or even understand marriage I won't know what that feels like, but they will never hold a sobbing adult mind in a broken body who grieves becuase she feels she may never have the energy to experience the joy of marriage. Where someone else's child will never experience a "normal" sleepover because their mind will never mature, they won't watch their child watch their friends go out to prom,friday night parties and dates and watch the child mourn she doesn't have the energy to experience what her mind so wants to try. I won't know what is like to bring a clearly severely disabled child to a Dr and have people uncomfortable to ask what is wrong, or people even avert their eyes in discomfort, but they won't know what it is like to take a child who looks so freaking healthy and try to convince a Dr. that they need their help because just the week before they were terribly ill.

Abby always says she has it easy. She said she has always been sickly. She said the ones who have her sympathy are the ones who had full lives, and healthy bodies and suddenly one day they lost it all. She said it makes it easier to not miss what she could never have.. I wish I had her insights.


Different symptoms but IDENTICAL heart break. IDENTICAl pain.


Her advice and her thoughts, and her emotions and her opinions are just as valued, justified and credible as mine.


I have learned a lot from her during that tough year. She has kindly let me work through my lack of self awareness. I will probably make the mistake again, but I am sure working harder not to do it.


When she talks, when she expresses how she feels I will NEVER think "what is she so upset about" again.


When it comes to us being Mom's of sick children? We are identical.


Tuesday, June 24, 2014

Caregivers are NOT Victims

This post was on Facebook a couple weeks ago and every time I think about it I have become even more offended, horrified and shocked any person would ever feel this way.






Caregivers are often the casualties,the hidden victims. No one see's the sacrifices they make.
Judith Long





Victims? Sacrifices??? What a bunch of self indulgent,selfish baloney.


It is a GIFT. A RESPONSIBILITY. A JOY. A CHOICE.


I feel the same way about "Me Time"- again if you need to have "me time" in order to be a parent? You should never have had children. From the second that child starts growing in your womb, "me time" should NEVER be a priority, that child, that gift is first, forever.



The moment you decide to become pregnant or adopt, you will be a caregiver, a parent, and second in line for the rest of your life. Out of all the gifts in my life, the ones I hold dearest are that I have children I can work for, I can love, I can give to, I can help, I can support, I can share with, I can put FIRST.


If you see being a parent of an ill child makes you a victim? Don't have children. You had no business having children if you are unable to rejoice in their life with all of their individual traits that make each of us so special.

No pity. No sorrow. No envy. No resentment.


If you think you have been dealt a bad hand and deserve more from your family,society, community because your child is sick? You have a major problem. You KNEW when you got pregnant that children come to us as individuals with individual needs and wants. You KNEW you had to be willing to put your needs aside for your child be it that they be gifted or disabled.

Each child is unique.

If your child is sensitive or shy each time other children say something cruel or the world is insensitive your heart will break with theirs. If you child is gifted? You will have sleepless nights wondering if the choices you make for their education will allow them to embrace their unique gift and have a happy life or if those choices will forever taint and limit their academic strengths and views on society. If your child is a gifted ballerina or athlete you will struggle to pay the bills, to travel with them for training, to find equal time for your other children and have many sleepless nights wondering what their future holds and how the choices you make will impact their happiness and success as adults.

No matter what traits your child has, there will be hard decisions,but what a gift that you are are trusted with these decisions.


It doesn't matter who your child is, what is unique or different or normal about them, parenting is the hardest job and the biggest joy any person can experience, you are NOT a victim. You are lucky, very very lucky.

When you consider yourself a victim or that parenting a disabled child is a sacrifice? You need to really take a deep look at yourself and set your priorities straight. Your child, with all their unique traits is the greatest gift, and if they have special needs that give you the opportunity to work harder? You are even luckier. You have been given the opportunity to make an even bigger impact.


I am not saying there won't be days that seem to last forever, or days you feel so weary you wonder how you will make it till bedtime, what I am saying is when you do lie your head to your pillow you should feel lucky to have been gifted with children. Not just when they are babies, or toddlers or children or teens.. every single day for the rest of your life.

Gifted not victim.

Everyday Muffins(gluten free, dairy free, corn-free, nut-free, soy-free)



I named these "Everyday" muffins because at least for the last couple months, Abby has eaten them EVERYDAY! :-) She goes through stages where there are certain foods that seen to agree very well with her body and serve their purpose as well. Eggs,blueberries,yogurt are all positives and this also serves up a good dose of sugar to help her digest them. They just seem to "work" really well. You would think she would tire of them, but not so far! These are so easy to make(I can whip up a batch before coffee!!! and have successfully made them just mostly eye balling the ingredients instead of measuring, that forgiving!) and so far have been no-fail for us. Since beginning the elimination process a couple years ago, Abby has always done consistently well with blueberries. Wild blueberries are the hands down favorite, though regular blueberries are loved as well.


2 1/4 cup all purpose gf flour
1 tablespoon baking powder(homemade)
1/2 teaspoon salt(very hard for the corn sensitive crowd,we have been using 1 brand of pink himalayan)
1/2 teaspoon guar gum(still using NOW brand)
3/4 cup granulated sugar(Domino's)
6 tablespoons grapeseed oil(TJ's )
1/2 cup plain fullfat coconut yogurt(homemade)
3 large beaten eggs
1 teaspoon vanilla extract(homemade to be corn-free)
1 1/2 cups frozen wild blueberries(for the corn-free buying frozen berries can be tricky! freeze your own for corn-free)
2 tablespoons sugar


Preheat 375


In bowl mix gf flour,baking powder,salt,guar gum,3/4 cup granulated sugar.


Add grapeseed oil,coconut yogurt, eggs,vanilla extract. Mix just until dry ingredients are wet.

Lastly add frozen blueberries. Scoop into greased muffin tin or papers(these can have hidden corn,chose your papers carefully.) about 3/4 full. Sprinkle with a bit of granulated sugar.


Bake 20-23 minutes.

Makes at least 18 muffins.

Because of the blueberries these keep well for a couple days and we have individually wrapped and frozen them as well.


TIP: If it annoys you for your batter to turn blue from the frozen berries, thaw berries,rinse and drain and dry and then add to the mix. We have no problem with a pretty purple tinge to our muffins.


 
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