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.

Wednesday, July 23, 2014


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





Endothelial dysfunction





ectodermal dysplasias




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.


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.

Sunday, June 22, 2014

Gochujang(gluten free, corn-free, soy-free, chemical free)

I watch Food network and am a huge fan. Chopped especially. Often they will use some new ingredient on the show I have never heard of, which then leads to a google search and if I think it is something either Abby or the rest of us would eat I go hunt Houston International groceries(or order it) until I find it.

In the Food Network magazine a couple months ago they were talking about the Korean Gochujang. A slightly sweet, spicy,and tangy red pepper sauce. Sounded great! Then I realized it was a fermented product, so that meant Abby could not eat it, but figured odds were Derek would eat it, I have never seen him pass on anything spicy.

To my surprise it was carried everywhere! Well, at least at the various Asian Markets we visit. I threw a container into my cart, ASSUMING it would be at least safe for Derek- Hardly! I got it home and read the ingredients- Corn syrup and Wheat as well as soy were in the first couple ingredients.. sigh.. I was so annoyed!!! No wheat(gluten free) for Derek at all, and he does much better without any corn and we do what we can to avoid soy. Some ingredients we just try not to bring in the house, we find it is not only kinder to Abby to not have forbidden ingredients in the pantry or fridge but safer.

Feeling denied I threw it in the trash. I opted to try my hand at making my own.

Instead of corn syrup I used palm sugar(you could use any sugar!)this also helped in substituting out the malt powder(simple carb)A number of recipes call for rice syrup or other sweeteners.

Instead of fermented soy powder I used some fermented chickpeas(I am trying my hand at making chickpea "soy" sauce so fished some out of the jar to use.) If you don't have any fermented chickpea's laying around(LOL)I am wondering if a little live miso might get things rolling?

Instead of malt powder I used regular old chickpea(besan)flour.

It also includes korean red pepper powder, easily found at most asian markets. You can also grind dried red peppers. Finally you need sweet rice flour and salt.

In a corn free, soy free, gluten free, and chemical free home, these were easily on hand.(well the fermented chickpea's were luck!) So, despite the major change up in what ingredients I used it really turned out delicious.

The Houston morning sunshine helped finish it with a nice darkening. Otherwise the couple months I had it going I left it in a sunny window. I just kept a paper towel tied over the top(lazy to open and close!).

I cut the recipe way way down. Of course now that I tasted it I wish I had made the big batch. This stuff is going on or in everything!

I used the recipe at Maanghi for inspiration- Here is the link directly to the Gochujang recipe

Friday, June 20, 2014

Purple Sweet Potato Pie( dairy-free, corn-free, soy-free, gluten-free, nut-free)

Whenever I see the purple hawaiian yams(also known as Okinawan or purple yam) I cannot resist buying them. I find their flavor to be more mild and sweeter. Which makes them ideal for desserts!

Abby is a HUGE fan of crustless sweet potato pie. Pretty much a crustless pumpkin pie just with sweet potato. Of course we could not resist making a "purple" version, what could possibly be prettier?

3/4 cup granulated sugar
1 teaspoon ground allspice
1/2 teaspoon salt
1/2 teaspoon ground ginger
1/4 teaspoon ground cloves
2 large eggs
1 1/2 cup cooked and mashed purple sweet potato
1 cup plain homemade coconut yogurt

Coconut Whipped cream, (optional)


Preheat the oven to 350 ( Glass pans needed a lower temp(325) and longer bake.)
Lightly grease bottom of baking pan or glass baking dish.

Place all the ingredients in your blender. I find this works best when you are making your own sweet potato's(vs canned)it will blend it very smooth for a lovely texture.

Pour into your greased pie pan. Bake for aprox 50-60 minutes, or until knife in the center comes out clean.

Cool and then chill. Serve ice cold with a little whipped coconut cream.

Topping: I just used some plain icing in a piping bag to create a lattice.

Wednesday, June 18, 2014

Mast, Mito, EDS, Autism and POTS

These are becoming quite entwined for many patients.

How in the world do you sort out all the symptoms? EDS and MAST? Mito and Autism? Mast and Mito? Or for Some EDS,POTs, Mito and Mast?

If you can take meds that gets easier.

Many MCAS patients respond very well to a combination(has to be a combo for most) of over the counter meds. There are also a lot of prescribed medicines that patients respond very well to as well. They can improve the quality of life remarkably.

You can keep a journal. Each day list your symptoms. Where you have been. What you ate. Who you visited.
Removing "triggers" from your home and diet can be incredibly helpful for many. For Abby us charting her symptoms daily lead us to more easily hunting down foods and other things in her environment etc that were triggering her. Eliminating triggers for Abby is what has provided her with this period of fair stability. Since we still have not figured out why she tolerates zero meds or vitamins, removing triggers has been critical for her. Avoidance of triggers is recommended for all mast patients.

Support Groups- On the various Mast support groups on facebook, EDS support groups and autism support groups you are going to find patients with incredible amounts of knowledge on any given connected disorder.

Finding a Mast Specialist- If you suspect you have MCAS(Mast Cell Activation Syndrome) it is a MUST to find a Mast Specialist that has an interest and good knowledge base in MCAS. There are lots of Mast Specialist who understand Mastocytosis but that doesn't mean they "get" MCAS.

I still am not sure how all these disorders seem to keep crossing over, many of us agree that there is clearly a connection.

Is the mast cells? The collagen? The Mitochondria? Methylation? What caused the issues with all of those? Could it all have the same root cause? Why is becoming so common to have not just 1 but a couple?

Things get more complex when you need a specialist who understands ALL or at least most. A few of the Mito Specialists are learning about MCAS and are becoming better at spotting potential symptoms and making the right referrals. This has thrilled me to no end.

Most MCAS focused Specialists seem to "get" that many of their patients have multiple diagnoses.

I am not as familiar with the EDS community, but so far my impression is that they are an amazing patient population that go out of their way to help other patients. They made the connection between Mast and EDS first.

Autism families rock, plain and simple these families work incredibly hard to gather and share critical information for better care for all Autism families. I have found my friendships with these families to be priceless. These folks are hardcore Thinkers and always willing to brainstorm for solutions.

You need to read. There are more and more websites and blogs popping up over the net with easy to understand basics on MCAS. There are the Mastocytosis societies both in Canada and here in the US that are priceless resources of information.

We don't think the Mast is a primary for Abby, but we know her reactions impact her quality of life more then anything else. MCAS is not curable, but is very treatable for most.

Have patience, just like with Mito, the Mast community is learning and growing. Specialists have different opinions depending the newest research(which is popping up daily) Do your research and try to find one that you suspect will be a good match for you. I find speaking with other patients has been the number 1 way to find the best fit.

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