Not the only contaminant.
FYI
Scotchgard = teflon.
Colgate Easy Glide Dental floss = PTFE
Glide Dental Floss by Gore = Teflon
And for a list of clothing from uniforms to no-stain pants.
Tuesday, September 21, 2010
Friday, September 17, 2010
FAQ about Ellie
1. Q. Does she just have food allergies?
A. Yes, she has food allergies. But not 'just' food allergies. Common allergies as we know them affect the respiratory system. FPIES affects the gastrointestinal system.
2. Q. What can she eat?
A. At this time she is on a liquid diet (prescription medical grade amino acid based formula). She has two safe foods - peaches and nectarines.
3. Q. What can she not eat?
A. Anything other than her prescription formula and plain peaches or nectarines.
4. Q. Will she 'outgrow' it?
A. Technically no, since FPIES is a Tcell response. Cells in her blood respond incorrectly to foods and those cells take an average of 18 months to die off. After those 18 months, when she is exposed to that food again, her body may choose not to react and that food would have become suddenly safe.
A. Yes, she has food allergies. But not 'just' food allergies. Common allergies as we know them affect the respiratory system. FPIES affects the gastrointestinal system.
2. Q. What can she eat?
A. At this time she is on a liquid diet (prescription medical grade amino acid based formula). She has two safe foods - peaches and nectarines.
3. Q. What can she not eat?
A. Anything other than her prescription formula and plain peaches or nectarines.
4. Q. Will she 'outgrow' it?
A. Technically no, since FPIES is a Tcell response. Cells in her blood respond incorrectly to foods and those cells take an average of 18 months to die off. After those 18 months, when she is exposed to that food again, her body may choose not to react and that food would have become suddenly safe.
What is Food Protein Induced Enterocolitis Syndrome (FPIES)?
FPIES is a non-IgE-mediated gastrointestinal food hypersensitivity disorder. Food protein-activated intestinal lymphocytes elaborate inflammatory cytokines that result in increased intestinal permeability, malabsorption, dysmotility, emesis, diarrhea, pain, and failure to thrive.
In other words, FPIES is the intestinal version of anaphylactic shock. Eating food, particularly those high in protein, cause mild to severe reactions. Symptoms include some or all of these: malabsorption, colitis, shock, extreme lethargy, ulcerated colon, projectile vomiting/severe reflux, extreme diarrhea, failure to thrive, nutritional deficiencies, colic type symptoms, bloody stool, mucousy stool, rash, and stomach pains.
In other words, FPIES is the intestinal version of anaphylactic shock. Eating food, particularly those high in protein, cause mild to severe reactions. Symptoms include some or all of these: malabsorption, colitis, shock, extreme lethargy, ulcerated colon, projectile vomiting/severe reflux, extreme diarrhea, failure to thrive, nutritional deficiencies, colic type symptoms, bloody stool, mucousy stool, rash, and stomach pains.
Thursday, September 16, 2010
Only a Flesh Wound (or Not Who I Think I Am)
Today I thought to myself "I am so beat up." And then I laughed. My body hurts from lack of good exercise and carrying Elianna around on my hip. I have a 13 month old who still wakes multiple times at night to eat due to necessity. I think I tore something in my shoulder from reaching around to her in the car. Yesterday I impaled the palm of my hand when catching one of the baby rabbits I brought home for Moriah as a pet. And this morning as I was waking in bed Elianna gave me a head bunt accompanied with a large, fat lip.
Today I thought about how I felt beat up physically and then laughed because I feel beat up emotionally, too. The last several weeks have been full of my saying the phrase "I just cant do this" and then thinking "that whole line about He won't give you more than you can handle is crap; I am done." Then God spoke to me through a MFF blog. She was talking about how she was tired of the refining process and trying to be who she was designed to be. And God spoke to me. He said - 'Thats YOU. Let go of who you think you are, and allow me to shape you into who I know you can be.' It was a sobering moment. And I needed the day to process it. Along with a nap and another email from a MFF who encouraged me to visualize leaning on the Lord. I realized that I am limiting myself. That regardless of the events that the day holds, He is there, He is blessing me, and He is providing.
And then I thought about who I am, and I laughed. I often compare myself these days to the Isrealites and their journey in the desert. I find it amusing how often we want to head back to captivity when things get rough. Today I thought about how we often fight God's will for no reason, and end up missing body parts in the process (figuratively of course). Perhaps this was not divine, but I instantly had the thought 'Oh my gosh. I am the black knight!' For those of you who are unfamiliar:
God is so good. And I am so human. Sometimes I have to laugh.
Today I thought about how I felt beat up physically and then laughed because I feel beat up emotionally, too. The last several weeks have been full of my saying the phrase "I just cant do this" and then thinking "that whole line about He won't give you more than you can handle is crap; I am done." Then God spoke to me through a MFF blog. She was talking about how she was tired of the refining process and trying to be who she was designed to be. And God spoke to me. He said - 'Thats YOU. Let go of who you think you are, and allow me to shape you into who I know you can be.' It was a sobering moment. And I needed the day to process it. Along with a nap and another email from a MFF who encouraged me to visualize leaning on the Lord. I realized that I am limiting myself. That regardless of the events that the day holds, He is there, He is blessing me, and He is providing.
And then I thought about who I am, and I laughed. I often compare myself these days to the Isrealites and their journey in the desert. I find it amusing how often we want to head back to captivity when things get rough. Today I thought about how we often fight God's will for no reason, and end up missing body parts in the process (figuratively of course). Perhaps this was not divine, but I instantly had the thought 'Oh my gosh. I am the black knight!' For those of you who are unfamiliar:
God is so good. And I am so human. Sometimes I have to laugh.
Tuesday, September 14, 2010
Chickens Are Not Vegetarians: info for the FPIES and NON
The egg section of the supermarket makes me laugh. The variety of egg labels is insane. Organic, free range, cage free...the one that makes me laugh the most is 'vegetarian fed'. Could someone explain this one to me? First of all, chickens are not vegetarians. Sure, they eat vegetables and grains. But they also eat BUGS. In fact, left to their own devices, chickens will sometimes eat each other. Now if you are concerned about the poor bugs that are being eaten, then why are you eating eggs (which is meat by the way)? Perhaps you are concerned about omega 3 or omega 6 or omega 'whatever', and the vegetarian eggs are higher in this. These eggs break several of my personal rules on grocery buying. First, it is trendy. Second, we should be eating things how they were designed. And third, do you really know what that omega diet is?
Aside from bleaching white eggs and salmonella, the one thing that concerns me for my home is that the majority of commercial chickens are fed a diet of solely or almost all soy. The research I have seen shows that this passes on to the eggs, which really makes sense if you stop and think about it. So...
For the FPIES ~ when I get to the point that I can trial eggs for Ellie, how will I know if it is an egg fail or a soy fail if the eggs come from soy fed chickens? My mommy brain tells me that I wont!
For the non-FPIES ~ trust me when I say you have enough soy in your diet already. That is an entirely different research topic.
At the moment we do not have the ability or resources to have our own chickens, and Jason runs screaming from the room every time I mention it. The solution for my house is to find a local farm to purchase eggs from (thanks for the help finding a farm MFF!).
Here is a GREAT article on how commercial eggs are processed - quick and easy to read. If you are unable to open the link because you are not a member of Dr. Mercola's site, let me know and I will email it to you!
Are Organic Eggs Safer?
Aside from bleaching white eggs and salmonella, the one thing that concerns me for my home is that the majority of commercial chickens are fed a diet of solely or almost all soy. The research I have seen shows that this passes on to the eggs, which really makes sense if you stop and think about it. So...
For the FPIES ~ when I get to the point that I can trial eggs for Ellie, how will I know if it is an egg fail or a soy fail if the eggs come from soy fed chickens? My mommy brain tells me that I wont!
For the non-FPIES ~ trust me when I say you have enough soy in your diet already. That is an entirely different research topic.
At the moment we do not have the ability or resources to have our own chickens, and Jason runs screaming from the room every time I mention it. The solution for my house is to find a local farm to purchase eggs from (thanks for the help finding a farm MFF!).
Here is a GREAT article on how commercial eggs are processed - quick and easy to read. If you are unable to open the link because you are not a member of Dr. Mercola's site, let me know and I will email it to you!
Are Organic Eggs Safer?
Saturday, September 11, 2010
Conundrum
So. Having a sick child can be very consuming. Many moms have dedicated entire blogs to their pursuit of health for their FPIES children. I am very tempted to do that, and perhaps in the future I will, but for now, I find having a family focused blog is holding me accountable.
When I started writing I decided that I would focus on my new journey of homeschooling, as well as my passion for new information that will make my family healthier. The latter has turned into FPIES, and the first has gotten little attention.
Miracle after miracle led us to having Moriah, and once she was born, I was concerned that adding another child to our home would be difficult because he or she could never compete with or compare to her. The irony of that is that a large portion of our activities and conversations now revolve around her sister, and I want to make sure Moriah is not the one overshadowed right now.
Oh, to find that balance. On my knees I go again!
When I started writing I decided that I would focus on my new journey of homeschooling, as well as my passion for new information that will make my family healthier. The latter has turned into FPIES, and the first has gotten little attention.
Miracle after miracle led us to having Moriah, and once she was born, I was concerned that adding another child to our home would be difficult because he or she could never compete with or compare to her. The irony of that is that a large portion of our activities and conversations now revolve around her sister, and I want to make sure Moriah is not the one overshadowed right now.
Oh, to find that balance. On my knees I go again!
Thursday, September 9, 2010
It's....A.....YES!
In record time we received word today that the insurance company has approved Elianna's formula and that there will not even be a co-pay! Thank you to everyone for your prayers!
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