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, October 30, 2013

Gluten-Free Chicken Vareniki(Ukrainian dumpling)



Originally I had wanted to make Pelmeni and my dough is based on the Pelmeni dough. However, Gluten free being what it is, I found quickly that it wasn't going to shape into the beautiful of shape of the Pelmeni, but I found it would shape like a Vareniki.

With the Vareniki, it is a circle, you place filling and fold into a half moon and seal. With the Pelmeni you take it a step further and bend the tips of the half moon together. The Pelmeni dough calls for whole eggs, were the Varniki dough is some whole egg and some egg white.. In the world of dumplings big enough differences, in the world of my "make it work" gluten free and other restrictions, eh, I doubt the difference would be noticeable to us! Though, I might try the actual Vareniki dough next time.


There are a number of ways these are served. They can be boiled in a soup broth. Or served with just a bit of olive oil(grapeseed in our house) with some sour cream(coconut yogurt for us!) or even vinegar. Served with veggies, or hearty thick slices of bacon or sausage. The Vareniki's can be filled with a lot of different fillings including kraut- Never had them that way, next time I need to give it a try.


Both these dumplings appealed to us because they are boiled/steamed and not fried.


Abby does well with Chicken above all else so I opted for a simple chicken filling.

My recipe is likely not exact. I strongly suggest you look up a few recipes and see how they are done slightly differently. Also, I saw some great blog posts that took the time to provide pictures on how to shape the pelmeni or vareniki(they have a special pan now!) In the heat of the moment of trying to convert a traditional wheat flour recipe to gluten free, I tend to not keep track of what I am adding or subtracting, I do know I used a lot more flour then I originally thought I would need. This makes a lot of vareniki. If this is your first try, I suggest cutting the recipe in half..


Dough:

4 cups all purpose GF flour(though have a few cups set aside if it is too wet and for rolling)
3 eggs
1/2 teaspoon salt
1 cup water( I used 1 cup of half coconut yogurt and half water)
1 tablespoon grapeseed oil(or olive)


Throw all the ingredients in the bowl and start stirring. You want a dough, not batter. Add flour till at least a soft dough. Cover and let it rest for a few. Now, comes the tricky part- I kept plenty of flour handy, and grabbed about 1/4 of the dough, it was sticky, I kept working flour into it with my hands till it was barely sticky. I used parchment to roll it. On the bottom sheet of parchment liberally sprinkle with flour. Set dough in the middle, and sprinkle with more flour. Place sheet of parchment on top. Roll as thin as you dare. You know the dough is right because it will likely stick to only the top parchment or the bottom and not tear. If it tears? You need to work more flour in.. I used a round biscuit cutter but a glass would work to cut circles as well. Add about 1/2 teaspoon of filling(recipe below) and wet the edges and fold circle in half and press gently. I also used a fork to press around the edge to ensure a good seal. Place on a lightly floured board. make sure they are not touching. At this point you can place the whole tray/board in the freezer and freeze them well and then move them to a freezer bag, or one by one place them in a large pot of boiling water or broth. 8-10 minutes at a full boil. (depending on the size, more or less, I suggest pulling one and checking to make sure it is cooked before straining)


Chicken filling:

2 raw chicken breasts
1 peeled and roughly chopped yellow onion
2 cloves of garlic(I had roasted garlic in the fridge I used)
salt and pepper
fresh chopped parsley
1 egg(helps moisten and bind chicken)

Place all ingredients into high powered blender or food processor. Blend until a smooth paste. Cover and place in fridge until you are ready to fill your dumplings.

We garnished with some fresh chopped parsley and instead of sour cream some coconut yogurt that I mixed dill weed, parsley, and salt and pepper into- we were pleased at how nicely they worked together.

Sweet Potato Cookies with Ginger Glaze.(gluten free, dairy free, nut free, corn-free(lite))



I had some leftover pureed sweet potato and Abby's freezer cookie stash was running low. A favorite of ours over the years were soft pumpkin cookies with raisins.. sweet potato worked great in place of the pumpkin.. not quite as tender as a perfect batch of soft pumpkin cookies, but still very moist.

Someone had left a comment a couple months ago about homemade raisins. For the last couple years Abby did not tolerate raisins- no matter what brand, and we missed them. I did finally find some grapes that agreed with Abby and thew them in the dehydrator, made perfect and wonderful raisins. Knock on wood, at least just eating a few now and then, Abby has not reacted. Corn and other chemicals and colors(which are usually a combo of corn and chemicals)still appear to be the biggest obstacle for Abby's diet.

Remember to make sure your sweet potato's are safe. The biggest issue with potato's in general is they spray them with a chemical(corny)to prevent/slow the growth of buds. Some react to the corn in that spray.


Preheat Oven to 350

1 teaspoon baking soda
1 teaspoon baking powder(homemade or Hain's)
1/2 teaspoon salt
1 teaspoon allspice
1 teaspoon dried ginger
1/4 teaspoon cloves
1 3/4 cup gluten free all purpose flour
1 teaspoon guar gum(NOW brand is working for her right now)
1/2 cup coconut oil
3/4 cup granulated sugar
1 cup pureed sweet potato
1 large egg
1/4 cup diced figs or raisins( I made this batch of raisins in the dehydrator and so far so good!)


Mix dry ingredients first. Then mix in other ingredients, add raisins or figs last. Allow dough to sit on the counter for 5-10 minutes. This allows the thirsty gf flours to absorb. Depending on the gf flours you use and the moisture content in your homemade sweet potato puree, you may need to adjust and add more water or flour. If it is too dry, add a bit of water or milk. If it is too wet? A bit more flour.

Bake for 10-13 minutes.

glaze- I just added ginger syrup(simmered peeled ginger root with sugar and water usually simmer for a few hours ) to the powdered sugar until it was the right consistency to glaze the cookies once they were cool.

Once the glaze is set, these freeze nicely.

Tuesday, October 29, 2013

Caramel Apple(Pear) dairy free, corn-free, gluten free


This was the first time in years I have attempted this, on a whim. We tried doing a pear minus the skin(Abby doesn't eat the skin,doesn't digest well.) that did not work so well! It was a comical mess really! We did finally dip a pear with the skin and worked fine, though my caramel was lumpy :-) The apple for Sara turned out almost normal looking! LOL At the end of the night, we decided not pretty, but tasty! Next time we will have coconut flakes or crushed roasted to chickpeas to dip them in, would make them taste better, and improve their "look" immensely! :-)

Ingredients:

plastic or wooden craft sticks(some are corn contaminated)
a couple small apples, and a couple small firm pears(the sticks slide out easily of ripe soft pears)- stems removed
3/4 cup coconut milk cream(homemade or arroy D or thai kitchen's, chilled overnight, remove the firm cream and only use it)
1 cup granulated sugar(domino's)
1/4 cup Lyle's Golden Syrup(this has worked for Abby and some with corn allergies, but proceed with caution)
2 tablespoons palm shortening(have been using spectrum,but some reports of corn reactions lately. Another option would be tropical traditions palm shortening, or butter if you can have dairy. Coconut oil simply doesn't perform as well in most caramel recipes)




STEP 1
Insert sticks into tops of apples and pears.
Place a bowl larger then your pot in the sink full of ice-water.
STEP 2
Bring coconut milk cream, sugar, Lyle's golden syrup, and palm shortening to a boil in a saucepan over medium-high heat. Attach a candy thermometer to the pan, and continue to cook until mixture reaches 245 degrees, 8-12 minutes.(I only stir until blended and the sugar melts and then leave it alone)
STEP 3
Place pan in ice-water to stop the cooking(if you like, add a bit of salt and mix in while cooling,we love salted caramel).

Dip bottom of each apple/pear in caramel. spoon carmel to cover the apple halfway to three-quarters of the way up sides(or all the way like I did). Transfer to a parchment-lined baking sheet(I greased the parchment as well), and refrigerate until set, about 30 minutes (or overnight).




Monday, October 28, 2013

The Secret to Melt in your Mouth Roasted Chickpeas



You have seen them here, and now all over pinterest, on google searches even in magazines, Roasted Chickpeas. Everyone talks about how amazing they are so you try their recipe, and they don't turn out. Below step by step(and pictures below) of how to make them perfectly each and every time.


When they are made correctly, they are crisp,crunchy,melt in your mouth out of this world delicious. Unfortunately, most of the recipes out there seem to create an almost too hard to chew chickpea.. where you wonder if your dentist is going to know you have been chewing on hard chickpeas or maybe you were gnawing on pebbles!


I have tried these with little oil, with a higher temperature, with canned chickpeas with dried. I have cooked them hard and fast, and low and slow trying to get the perfect roasted chickpea. The method below is the best that we have found yet. These are so crisp you can crunch them between your finger tips, salty, nutty. Your dentist will thank you for giving up the pebbles!


To warn you, these take a lot of oil.. a lot a lot of oil. These are not low fat. These are not low calorie. These are a treat, or for those with outrageous terrific metabolisms. Even though these are no diet food, this is the best method for the perfect roasted chickpea. If you cannot have nuts, seeds, corn, you are going to want these. Actually, even if you can have nuts, you are going to want these! They take the place pecans when making a pecan pie. They crush nicely to take the place of peanuts in pad thai.. candied, caramel, garnishes.

Really these are more "oven fried" then oven roasted, but we try not to think about that when we are joyfully snacking away.


Ingredients:

1 bag dried chickpeas
1 cup grapeseed oil(1 cup of coconut oil works too)
salt.


1) soak your chickpea's overnight.

2) cook your chickpea's till so soft some are in endanger of bursting. I use the pressure cooker to speed it up.

3)drain them well and let me air dry for a good 30 minutes to 1 hour.

4) Line a full sized cookie sheet with tinfoil(believe me, it makes the clean up easier)

5) Heat oven to 300

6) place cooked chickpeas on cookie sheet and evenly distribute them. It is okay if they are crowded, they shrink as they cook.

7) pour 3/4 cup of the grapeseed oil over them.

8) set timer to check in 1 hour.

9) at 1 hour use a wooden spoon and stir a bit. Add the remaining 1/4 cup by drizzling over(looking for dry spots)

10) set the timer for 30 minutes, stir.

11) set the timer for 30 minutes, stir. The oil should be foaming and getting sizzling now at the 2 hour point.

12) set the timer for another 30 minutes. Now it has been 2 1/2 hours and that oil should be nice and foamy, stir your chickpeas.

13) set the timer for 30 more minutes.

14) the foam should be settling down now at the 3 hour point. I suggest removing a couple carefully to a plate to cool for a minute or two. Try, if crisp they are ready to come out. I try a couple because sometimes some are ready and some are not. If they are all a wonderful texture they are done. If some are hard and some are not, stir and set the timer for 15 more minutes.

15) Test a couple, it has now been 3 hours 15 minutes- they should be done. But, if not, another 15 minutes.

16) They are surely done now.

17) using a slotted spoon, scoop chickpea's onto paper towels to drain. I scoop a few spoonfuls and then salt liberally. Then scoop a few more spoonfuls and salt. I tend to be a bit heavy handed with the salt. I allow to cool and drain till room temperature. I store in a paper towel lined air proof container.

18) Eat. These are amazing sprinkled with a mix of sugar and spices. Derek loves them sprinkled with cayenne pepper.

Above, cooked chickpeas ready to go into the oven.

Chickpea's after roasting 1 hour.

Chickpeas after 1 1/2 hour.

Close up of the chickpea's at 1 1/2 hour. See, they are starting to get "foamy". I know my cookie sheet is awful, but this cookie sheet is dedicated to chickpeas, and we have made many many batches.

chickpeas at 2 hours.

2 and 1/2 hours. See how foamy they are?

3 hours. Notice how the foam is nearly gone?

Here they are done.



Sunday, October 27, 2013

Sweet Potato Gingerbread Loaf with Salted Maple Icing (gluten free, dairy-free, nut-free, corn-free)


It is EVERYTHING PUMPKIN season! Usually we don't miss pumpkin, but this time of year, we just cannot help but to crave it. Our solution has been to use sweet potato to replace pumpkin, and it works perfectly!

Abby is on the mend though still has a long way to go. Her body is wiped out. After a week of dumping, she is now in the "nothing is moving" mode. There wasn't a lot I could do to slow her down, but I have done great with figuring out how to coax her body to keep moving.

Yesterday Sara could not help it, her craving for pumpkin drove her to make pumpkin bread. It smelled great, like beyond great, both Abby and I probably had puppy dog eye's watching her eat it. This morning I figured we could make Abby her own loaf. Plus, it has blackstrap molasses, sweet potatoes, ginger, and figs- certainly a good blend to force her body to give it up!

The other problem is that Abby cannot have any butter or alternative spread. There simply isn't a safe one anywhere. There is something to be said for a slice of warm quick bread slathered in butter... sigh. So thought about it and figured a frosting for a spread would work. Caramel sounded great, but seemed like a hassle at 6am and usually I have a jar in the fridge, not today though. Decided there is something decidedly fall like about all things maple. When I made the icing it was painfully sweet- yes, too sweet for even me! Then I got to thinking about that caramel again- salted caramel is delicious, so why not salted Maple? Turned out brilliantly. Thinking we might just like salted maple more then we like salted caramel.

This was a moist and flavorful cake. Not crumbly at all.

Sweet Potato Gingerbread Loaf:

1 c sugar(domino's)
1/2 grapeseed oil(Trader Joes)
1 tsp. vanilla(homemade)
2 eggs
1/4 c unsulfered black strap molasses(Plantation)
1 c. sweet potato puree(peel,boil, and mash)
1-1/2 c. gluten free flour(I used my blend which is an all purpose blend)
1 teaspoon Guar Gum(have been using NOW brand, fingers crossed!)
2 tsp. allspice(you can use cinnamon instead of allspice)
1/2 tsp. cloves
1 tsp. ginger
1/2 tsp. baking powder(make your own, or use Hain's)
1/2 tsp. salt
1/4 tsp. baking soda
1/4 cup diced and soaked dried figs(don't have to soak, but we like ours tender)

Whisk together dry ingredients and set aside. Combine sugar, oil, eggs and vanilla; mix until smooth. Add molasses and sweet potato; mix until blended. Add dry ingredients and mix, scraping sides of bowl as needed. Lastly add diced figs. Mix until blended.

Grease loaf pan. Pour batter into pan and bake at 350 for 60-65 minutes(at 50 minutes if browning too much cover with tinfoil). Reduce heat by 25 degrees if using glass loaf pan.


Salted Maple Icing

3/4 cup palm shortening
3-4 cups confectioners (powdered) sugar, SIFTED(make sure it is corn-free!)
1-1 1/2 teaspoon pink himalayan salt
1 tablespoon vanilla extract
5-6 Tablespoons grade B maple syrup(grade B has a stronger maple flavor)

Cream it all together. If too dry add more maple syrup. Start with 1 teaspoon salt, and taste, add more salt as desired. We liked ours more salty. I put mine in a piping bag, but you can just spread or spoon for each slice.

I had a few lighted salted roasted chickpeas I crushed and garnished with, no need for garnish but was a nice added texture.



Wednesday, October 23, 2013

Prickly Pear Jelly


With Abby on the road to recovery, it was well past time I had some fun in the kitchen.


Derek had found some prickly pear this past weekend and it has been killing me knowing they were in there just waiting to be eaten.

Fresh I am not a huge fan, not bad at all, just very bland. Once you cook them, add a little lemon juice, plenty of sugar they warp into something really remarkable.

A touch of tart from the lemon, a slight watermelon undertone and the strongest flavor to my taste buds was a fresh cherry flavor.

Not to mention the color- talk about vivid! I had read on a few blogs that it stains the finger badly, but honestly I think pomegranates or beets stain far worse.


Not sure when-if Abby will be up this batch to try but it was fun to make it. I had a slight reaction myself to it, doesn't mean Abby will react, but doesn't exactly reassure me that she won't. Won't be wasted! Derek and Sara will enjoy this batch if Abby and I end up steering clear.

Not really a recipe. I simply peeled the pears, chopped and cooked for awhile till soft. Pushed them through a sieve to remove the zillion tiny seeds. Then added an equal amount of sugar, the juice of 2 lemons and cooked until it gelled. (test on a cold plate kept in the freezer)


Tuesday, October 22, 2013

Finally

Though she is still asleep based on last night, we have finally made some progress.


Her face looked so much better last night. She definitely was feeling more herself. After lunch till bed no fever. I slept much better knowing she was going to be just fine.


It is probably going to take some patience to get her back to baseline, but it is just such a relief to think we made it through the longest week ever!


Now to get some protein in her.. easier said then done. She did a little better eating yesterday, though it continued to fly through her. I suspect protein isn't going to help matters, but since even simple carbs and starches aren't staying, it is worth a shot. She must be absorbing some of what she is eating because her energy level was improved yesterday. She is still having an issue regulating her temperature, but I have been sick enough times to remember that is all part of having a nasty virus- just takes some time to get over that part.


Based on Abby's pattern of slow recovery, we will just have to be extra careful for a couple weeks to avoid her getting nailed with another virus..


This was the hardest week in years. Before the depletion I still would have been freaked out over Abby, but not this badly. So many families have to run to the hospitals for immediate care with each virus or bacterial infection, and we cannot with Abby. From the IV's, fluids etc she would be reacting like mad, and getting sicker instead of better.


We do feel extra triumphant though, just some hand holding from the family Dr, and no meds, no antibiotics no anti viral meds, we made it through this and this bout of sickness was the worst viral Abby has ever had.

Gives us just that much more hope that our methods we have created special for Abby, are working, they are the best methods, for Abby.


Now to get some meat on her scrawny bones. :-)

Monday, October 21, 2013

Will it Ever go Away?

As we ease past worry and are sliding into weary, her fever is back.. I swear, this is the bug that will never end!



In some ways she is slowly doing better. In other ways not much improvement. The dumping continues and she is starting to look down right scrawny.

The fever is low so figuring this is just part of the course and not anything secondary. Besides a tiny cough nothing new.

The leg pain seems to come and go. Yesterday afternoon it was pretty bad.


This morning though she is moving around more on her own without me hauling her with the wheelchair. Which means she must be absorbing something to keep her moving, very reassuring to see her on her own two feet, though tired feet.

I said I hoped by weds we would be past this, and we are still hopeful. I have been reading about a lot of families being hit with a similar virus that lasts well past a week.

She has been really rashy yesterday and this morning, just touching her and she welts. I guess she is just sensitive right now.

Hoping she will be to get some good rest and hoping she will eat a little more. Not much appetite yet. Today and tomorrow I am going to be cooking all her favorites and hoping something will have enough appeal to get her to eat more then a few bites.

Sunday, October 20, 2013

Getting there...

Definitely on the right track. She looks like she has been run over by a semi this morning, but she had a smile for me.


Her gut is trashed. Every sip is still causing spasms. I really think when that is settled down we will see more progress.


I don't have to put her on the scale to see this bug ate more then a few pds off of her. She does have a nice padding of slight edema so think it is mostly fluid loss. Even Abby was grateful for the edema through this, hard to become dehydrated when you have edema.


Once she can eat and keep it in, I will feel much better.


Thankfully, this is not the norm for Abby to get this sick- ever. If we can keep her from catching anything else for the next couple weeks we ought to be on track. We have banned hand sanitizer from our home, I feel anti bacterial soaps are so over used and contributing to bacteria becoming resistant. I am breaking my own rule for now though, hand sanitizer a zillion times a day for everyone! We are even changing our clothes coming in the house- no secondary infections, PLEASE!! :-)


Grateful we made it through without having to resort to an ER trip.. I cringe at the thought of going near a hospital.


Sometimes the old fashioned way, is just fine. Even for a patient with a zillion weird things in her records, frankly with Abby, old fashioned is gobs healthier and safer.


Fluids and rest. Hoping by tomorrow she will keep a few bites in- I am guessing by weds she ought to be healing up nicely.



Saturday, October 19, 2013

A Bell for Abby


Fever appears to have broken. 98.5 !!! Let me tell ya, I wanted to drag out a marching band.. for a few minutes at least.


She looks truly awful. Never seen her soo frail,weak,I think the word sallow works,a bit disappointing that she looks as bad without the fever as she did with the fever. This bug took a lot of her.


The look on her face when she realized her fever had broken caught me off guard. I thought she would be as excited as I was.. The thing was I think she thought that when the fever broke she would feel better, and she doesn't. Anyone who had a bad flu, bug etc knows it can take days, weeks really to bounce back. Knowing that the next couple weeks are going to take some patience was disappointing for her.


Her gut is destroyed. It is going to take a long time to get her back to her old self I am afraid. Starting to wonder if a couple years ago when her gut shutdown if it was due more to the sinus infection then the antibiotic- though hard to say, when she reacts to medicines or foods her gut is the first to show stress, and clearly when she is ill her gut shows stress. I suspect we have a very long road ahead getting her gut to play nice again.


Maybe she will surprise us, she regularly does. Fingers crossed she comes back from this faster then we think.


On a positive, I have caught up on a lot of shows, movies, reading.


Abby really hasn't even asked to watch anything of her preference yet. Kind of looking forward to her wanting to torture me with her favorite programs.

Knowing we most likely have some long days ahead, we are buying Abby a bell. Abby has a very soft, very quiet voice even at her best. When she is at her best she can holler though never did even as a baby. She was a "fusser" and rarely cried and never wailed, screamed etc. When she is sick, we are lucky to hear her when she sits next to us. She hates feeling like she stuck in her room, but right now while she is weak as a kitten she does need a little help getting where she needs to go.

Even with the fever broke, she is feeling hot.. kind of interesting because she is always always frozen. Derek and Sara run hot so normally they appreciate it when there is an excuse to keep the house as cold as a meat locker, but she needed it so cold in here, that last night she drove Derek and Sara to hunt for winter clothes, socks and blankets! When she finally gets cold again, I will be pleased, I will know her body is going to back to it's old self again.

Figured a bell is the perfect solution for her feeling stuck, I should be able to hear it most everywhere in the house. I won't have to keep checking to see if she needs something, and she won't feel stuck.

I have a gut feeling I am going to regret getting her a bell, and I cannot wait!

Friday, October 18, 2013

Still Sick..

On a positive the fever is for the most part staying under 102 now.


On a negative, now nothing is staying in...


Going to be a long fretful weekend for the Neuman clan.

What I have learned, she is tough. Just when I think she cannot possibly handle it, she manages.


Another day of "Drink, Abby,you have to drink."


Again so very grateful that I have Sara! Derek and I chuckled that we are so glad we had the girls when we were younger,we no longer bounce so well after losing sleep with a sick little one.

Maybe today will be the end of it. It has to end sometime right?




Thursday, October 17, 2013

Fever

Just when I think we surely have seen it all with Abby something new insists in popping up.


We are working on day two of 103.5 temperature spikes. In 18 years she has NEVER had a fever over 101. She had pneumonia, ear infections and a sinus infection at the same time years ago and only hit 101.


Tepid water baths, 3 adults and time.


We did take her to the Dr yesterday to make sure there isn't anything bacterial going on, but if there is? That isn't much better. That means playing russian roulette with antibiotics- Abby will react to some to degree to everything. The big question is always, is the treatment worth the reaction?


Hoping be it viral or bacterial it works it way through her quickly.


Sara is a rock star. She has taken the night shifts with Abby. So I was able to get some good sleep last night and feel much restored.


Fingers crossed this bug works it way through and out of her today. She is wiped out but holding.



Tuesday, October 15, 2013

HIV would have been Easier.


A patient walks into a Drs office and says," I have Mito." Most likely the Dr. will say," nah, you don't." They don't really believe in Mitochondrial Disease. Most don't, though there are a few who are educated,even then they struggle with all the zillion presentations and variables. IF they do believe in Mito, they usually only believe the most severe onsets, therefore it is impossible for Abby to have it. A patient walks into the Drs. office and says," I have HIV," Does the Dr. say," Nah, you don't?" Probably not. I bet they would believe you on your word. With Mito you can even provide lab results, genetics, biopsy findings, and they simply don't believe it.

There are many different types of Mitochondrial Depletion syndromes. It seems the one that most Drs. are familiar with is the type that affects the liver and the children rarely make it more then a couple years at best. When if fact, they are finding more and more older children,teens and adults with Mitochondrial Depletions who have a much milder disease course.


A couple months ago now Abby had some immunological labs that came back that are similar as to what are found in HIV positive patients. Not exactly the same, but close enough to warrant a HIV test to rule it out.


It was almost a relief when he said we ought to test her for HIV. Really. It did not bother us in the least.


Over the last couple years as I read about symptoms, about diseases, about lab results I have a number of times thought, wow that sounds like Abby, only to find they were talking about HIV in the article.


On the drive home we talked about it. Abby said," HIV doesn't scare me at all, cannot be any worse then the stigma of having Mito in your records."


That caught me off guard. But she is right. I have to agree, Mito is the last thing you want on your medical records.


If you have HIV there is a stigma, a horrible one. AIDS patients and HIV patients have been treated horribly by the public and in the past Drs. But, progress is being made. There are many Drs. who are well educated on HIV who are comfortable treating an HIV positive patient.

Our families and friends would not be frightened by that diagnosis. We know that HIV passes in a number of ways. Including medical and dental procedures though rarely.

There are tons of great treatments for HIV. Many many patients live long full lives. They have careers, travel, eat out...


Please don't think I am minimizing HIV, but more trying to point out that having a diagnosis like Mito is as bad as HIV, actually worse in some ways. It is impossible to find Drs. No decent treatments. For many like Abby no quality of life. Too tired for friends. Too tired to read, to talk .. getting sick from being outside the home.. having no idea what tomorrow will bring. Heck, I am still not convinced Abby has Mito, but if this is Mito? I would not wish it on anyone.

Today, patients with HIV and AIDS still face unbearable bias. They suffer a horrid stigma. I know this, but to hear Abby say it would be "easier" to have that then Mito?



I have had well meaning friends ask, "Isn't Mito like fibro or chronic fatigue?" Not meaning to but insinuating that Abby is exaggerating or "milking" her disease, or we spoil her, that it is all in her head..

We have had Drs. who still don't think it is real. They would feel more comfortable treating Abby if she had HIV.

I am still certain that the depletion is secondary, stubborn I guess. We did manage to prove that the suspected FSGS due to Mito is wrong so why not think any of the diagnoses she received here in Houston are wrong? Each appointment I lean more and more toward Mast being the root of all of this,.. but Mast Activation is nearly as disbelieved as Mito is.. however, the prognosis is gobs better. Not curable, but for many, treatable.

Mito is a dramatic disease. Seems like the drama goes well beyond the disease. From patients to Drs, it is endless. I don't have the energy for it, and neither does Abby.

Of course we felt relief in knowing she doesn't have HIV but a burden in knowing that Mito has a rotten stigma and be it secondary or primary it is stuck in her record.

If a Dr. doesn't believe it, it cannot be real- Right?



Monday, October 14, 2013

Don't ya just LOVE Good News??

Despite weeks of being really sick and dumping plenty of protein, Abby's kidneys are in great shape.


Actually, we all are nearly certain it is NOT secondary FSGS due to Mito- Ha! Major relief.(need to have daughter remove from the blog when she gets a chance!)


At this point we would expect to see some change, and we haven't.

Clearly, something is still going on, but the longer we go with good function, the more it indicates that her kidneys aren't being affected by the Mitochondrial Depletion.


What is causing it? Still not sure. But, at this point it looks like a far more minor concern then once thought. There is NO proof it is fsgs of any kind, and the fact that they have done so well pretty much rules it out. OF course there are no absolutes, but looking like it is past time to remove that from her list. Whew!



Eliminate the food, and environmental triggers, and Abby's kidneys are much happier.


Many patients with a multitude of chronic health conditions show this type of stress to their kidneys. Sometimes it just happens. It isn't that uncommon.


Do we ignore it? Well no. But, things are surely looking up.


I figure if the SubQ didn't cause them to crash? Yet, she was so sick? Things are definitely looking brighter.


She is still dragging but her insides are no worse for wear. There is hope. We still believe there is something that is treatable happening and getting warmer to finding it. If it is Mast? Then we have lots of room to give Abby a long life with a much better quality of life, we just have to keep moving forward.

It only took a zillion second,third etc opinions to figure it out, but I really feel like at this point the sun is shining.

Saturday, October 12, 2013

Philadelphia Children's Hospital Bans Dietary Supplements

Saw this yahoo article yesterday and thought it was worth sharing.


Philadelphia Children's Hospital Bans Dietary Supplements

LiveScience.com By By Christopher Wanjek, Columnist
October 10, 2013




This section caught my attention :

"Yet the hospital is drawing a firm line when it comes to unproven dietary supplements, those so-called natural products hailed as cures for just about every ailment under the sun.

The reason is that so many of these supplements — echinacea, CoEnzyme Q10, and the like — are not regulated by any medical authority, and are not proven to cure or treat any disease. [11 Surprising Facts About Placebos]

Even worse, the supplements might interfere with medications that do work."





This really bothered me. Granted, Abby takes no supplements or vitamins because they tend to contain corn or other allergens(as do OTC meds and prescription meds). I have learned in the last couple years that synthetic vitamins aren't as good as the real thing through food. Yet for many patients who are unable to get the vitamins through food, they NEED the vitamins. For many patients with genetic conditions that don't all their bodies to properly regulate various vitamins and minerals they too may need various vitamin supports.


My question is, will they also ban Fortified foods in their hospital? The vitamins used to fortified foods are from the very same companies that they view as "unproven" and potentially dangerous when a patient takes them by mouth.

So, they better ban anything fortified as well.

If I had a child with Mito, on the cocktail and I lived close to that hospital? I would think this article was suggesting I find a new a hospital to care for my child.


Wednesday, October 9, 2013

BREAKING Mito News- 1 in 200 ....

Huffington Post-

David KirbyAuthor/Journalist

"Revolutionary" News From Medicine: 1 in 200 People Carry Mitochondrial Disease Mutation



Here is my favorite clip from the article:

"This new study suggests that, "mitochondrial dysfunction is a major underlying risk factor for human disease," said Dr. Douglas C. Wallace, professor of molecular medicine and director of the Center for Molecular and Mitochondrial Medicine and Genetics at the University of California-Irvine.

He should know. Dr. Wallace is one of the world's leading mitochondria researchers, and a member of the UMDF's Scientific and Medical Advisory Board. He also has a 23-year-old son with autism.

In April, Dr. Wallace told the Vaccine Safety Working Group of HHS's National Vaccine Advisory Committee that over-vaccination of people with mitochondrial disorders was a deep concern, especially in light of Hannah Poling, who got nine vaccines in one well-baby visit.

"We have always advocated spreading the immunizations out as much as possible because every time you vaccinate, you are creating a challenge for the system," Dr. Wallace testified. "And if a child has an impaired system, that could in fact trigger further clinical problems."

I take that to mean that children with impaired mitochondria might also have impaired immune systems. And children with impaired immune systems might not be able to handle, say, nine vaccines given at once."



Huge News. Please read the full article. My thanks to the UMDF, Huffington Post, and everyone else who participated in this research.






2008- Why did huffington post it today?

Not Much

I still haven't bought a camera. The choices are overwhelming. Hopefully, this weekend I will make a good purchase. Starting to miss my old camera, all the new ones have changed a lot in 10 years- hoping a new camera might make my picture taking improve :-) I have a few new experiments that I would like to share.. I will get caught up eventually.


Abby had been struggling pretty badly. We still suspect it was from the IVIg SubQ. All of the IVIg treatments contain corn,seems like the majority of meds and vitamins are corn tainted these days. Last week we did kidney labs. Monday is her appointment. I suspect her kidneys are holding up fine since we haven't gotten a call saying to come in sooner. Hopefully, Monday will show no changes. Every once in awhile when Abby is in a flare it really gets to us. I think this one scared us because she looked more terrible then she usually does and her misery was some how different this time.


Often it is hard to tell whether she is recovering or not, she tends to improve soooo slowly. Clearly yesterday she had made the turn for the better. She is still exhausted but definitely moving around with more ease and her pain levels have decreased. Life is good when she feels good. It is almost like we all stop breathing when she is in a flare, and when she finally starts to feel better, we all finally relax and life continues. Fall for me is allergy season because of the weeds and molds, but she seems to tolerate those well, so hopefully smooth sailing for awhile for her, it is such a treat to see her feeling herself again.


Despite ferments being a no-no for most mast patients I have continued to try with Abby. Since meds and vitamins are not options to help with her GI issues I have continued to focus on trying various foods to make her gut work a little better. Fermented foods are often easier to digest(sourdough). Also during fermentation or culturing the nutritional values often change for the better. So far she has failed most that I have introduced, but we finally found one she does well with, Kombucha.


I originally started the Kombucha for Derek and I, we had finally tried it months ago and took an instant liking to it. Of course I read the label(we read all labels)of the store bought one we drank and were very pleased to see no chemicals,colors, and it contained active probiotics. What really pleased me was that it had naturally occurring B-12.


Finally grew a "scoby" from a bottle of the kombucha I bought and had Abby try it. So far no reactions, no problem, and I am overjoyed to find anything at all with B-12 in it that her body seems to like. A big victory for us.


Added bonus, she hasn't had carbonation in a couple years and missed it. We had tried a few bubbly waters that are corn-free but they must have had something else in them that triggered her. The kombucha is more "fizzy" then carbonated, but close enough!

Hopefully, by next week I will have conquered a new camera and Abby will stay well enough for me to try some new foods with her.

Thursday, October 3, 2013

Got Allergies?

For the last couple years I often feel like screaming at many of the food allergy bloggers, and Allergy organizations.

For the most part, none acknowledge that corn can kill and daily is making thousands of American very sick. Sadly, there are Drs. that seem to believe the food manufacturers and a few less then corn savvy Allergy Associations rather then their clearly very sick patients- The Drs. quote the Associations, and ignore the patients.

Companies fill their "allergy free" products with hidden corn and tell concerned consumers "Nope, no corn in our products."


Thing is, there are THOUSANDS of patients suffering terribly from corn allergies. We have written many of these companies and explained again and again why their products make us and our children sick.


They don't listen.

Allergy Associations don't listen.

I have noticed many Allergy Bloggers do paid posts supporting various companies that are not safe or friendly for those with corn allergies. Actually, beyond corn-allergies I strongly recommend you read the ingredients on some of these products, some may be free of your allergens, but packed full of worse things.


Living Without actually did a terrific job trying address this growing and frightening allergy. I am grateful that at least one publication has a clue.


We cannot eat Namaste, nor McCormick spices, nor So Delicious, nor Enjoy Life- they ALL make Abby sick,likely corn reactions. It is possible there is something else in the products she is reacting to other then corn, but corn is most likely. Some are honest and admit there could be contamination, while others vehemently claim it is impossible, tell my sick kid it is impossible.

To be clear, there are NO Laws protecting those with corn allergies like there are for those with nut allergies or soy or dairy. So the companies are not doing anything illegal.

If it is fortified(has added vitamins)? Likely corny
If it has a lot of ingredients? Likely corny

We pretty much avoid all packaged foods for Abby, because there are no laws requiring labeling, so EVERY product is a risk.

Also, though we do prefer local, there are corn risks there as well. Bee Keepers feeding the bee's corn syrup, or cutting their honey with corn syrup or glucose(corny).. locally grown meats can be rinsed in citric acid(corny)fed corn, wrapped in corn contaminated packaging.

Safest way, grow it yourself. Sad isn't it? That 1 allergy to corn can completely alienate and isolate a patient. And No One cares.


Some companies are better then others. At this point though? Don't trust any company. They don't understand that when their packaging is lined with hidden corn? That makes us sick. That when they produce other products with corn in the same plant? That makes us sick. That we are allergic not just to the corn protein, but to ALL parts of the corn.


A fellow Blogger posted this one yesterday- If you have food allergies, or corn allergies- it is a MUST read.


Corn-Free Foods(and Products) List


The ONLY safe way to handle a food allergy is COMPLETE and TOTAL Avoidance.
 
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