Life Change

"Your patient will never be able to go back to the typical modern diet full of sugar, artificial and processed ingredients and other harmful "foods".  Use the years of following GAPS nutritional protocol for developing healthy eating habits for life!" 

- Dr. Natasha Campbell-Mcbride, 

Gut and Psychology Syndrome, pg. 155

We bought this house when Ellie was 2 months old.  We moved in one month later, two weeks before Christmas, and have never fully unpacked.  Boxes and piles throughout the house have sat untouched for over two years. We are selling.  As I clean and pack I am witness to the insanity and change of the last 2.5 years. We have never really had the chance to make this place home, and though we didnt know it at the time, this house would not be what we needed.

When we bought this house it seemed ideal.  It is located on the fringe of a newer subdivision, a couple blocks from farm fields, and within 20 minutes of most everything. On 1/4 acre corner lot it has a huge backyard and we made plans for a play structure, sand box, raised beds, and fruit trees.  Now it sits with chickens, chicken coop, metal swing set, sand box, and a half-dozen unfinished projects.  We did get in three raspberry bushes that the pet rabbit loves to torture.

The last 18 months have been absorbed with finding safe food for Ellie, and now my family. The hunt has been tough.  Regardless of how I tried to phrase the question the results were often the same.  Farmer's were offended that I questioned their feed practices, and some were dishonest which put Ellie's healing at risk.  Safe food has been hard to come by, and often expensive.  When I find it, I stock the freezer like a beef bone hoarder.  Often times my sources will just disappear.  Randomly they just stop calling me back, or tell me they are not comfortable selling their products to me.  This has gone on for over a year.  Search time and drive time have kept my days tense.

About a year ago I was in the thick of searching for Ellie safe meats when our local chicken guy just didn't show up to give me my eggs. He literally went from weekly chatting it up with me, to dropping off the planet.  It was so bizarre.  It caused me to pause and seriously examine our situation.  There has always been this underlying fear of 'what if we can't find food for her' or 'what if we don't have the money to feed her'.  This incident made those fears very real, and pushed me to my knees.

I told God that I knew He would heal her, and thanked Him for hope. I told him that I was tired of chasing safe food and unsure how to continue.  I asked Him if I was to continue searching, or make a change. Was He really expecting me to spend an unknown amount of years driving my car all over hill and dale to find food for her?  Food that I couldn't always even trust entirely? He knew our situation. He knew that I simply could not continue to squeeze a GAPS family, an FPIES toddler, working full time, and hours of searching for safe food into every day.  He also knew I was willing to do whatever it took, for as long as needed.  His response response gave me clarity and a vision.

What I realized was this:

I do not wish for Ellie to be 30 and looking for safe food on craigslist.
As the parents, I believe it is our job to make sure she grows up to be an adult 
who can provide for, and take care of herself.  
In addition, we want to always have a safe place
for her to come home to.

I took that to daddy, and he agreed.  We didn't know how we would get there, but we knew God had that plan for us.  We laid it at His feet, and the rest is history.  

Here we are a year or so later.  We are making a life change.  We are moving.  We have a vision. We have an idea of what we want to do.  We are even a little bit excited.  We plan to raise some animals for Ellie, for the family, and for other's in need.  Sounds exciting, eh?  It IS...now.  It was not all roses getting to that point, let me tell you. When I was a little girl I never said 'I can't wait to grow up and be a chicken farmer'.  We have had to do more accepting of our new normal, but that is o.k. Things don't always go as planned, and certainly not when we decide to have children.  But isn't that how it is supposed to be?  

We are officially on the hunt.  We are looking for a home.  We are open to most anything, and I am just specifically asking that it not be under a bridge (truly).  In all reality I am very comfortable saying:

It doesn't have to be big enough.  It doesn't have to be fancy enough.  It just has to be safe enough.  

And with that we have hopes of acreage and the start of a chicken farm.  Want to help? Know of a lead? Have a safe place for Ellie? Have a rental property that needs some great tenants? Want to sponsor a barn raising?  Or help us launch our business?

By the way, Big Sis has been asking to live on a farm since she could speak.  After we moved to this house she informed us that she liked it, it was nice, but when was God going to give us that farm?  We laughed.  And I am certain God did, too.  He clearly hears the prayers of children.  

For more info on how you can help or what we are looking for click HERE

Grain Free Chickens

We did it. Ok well the Daddy of the house did most of it.  And we had lots of help, like from Opa who helped with the chicken coop.  But we did it.  We have our first pot of grain free chicken broth brewing on the stove. 

About three or four weeks ago several of our backyard birds decided to hit puberty and announced their arrival by crowing all at once.  Not sure yet what we wanted to do with these roosters who were not quite big enough to butcher, we loaded them up and delivered them to my parent's house for holding.  Daddy and Papa threw together a second coop there to hold them, where they are happily gorging on worms and getting fatter.

We were left with 7 birds in our backyard for laying hens; until Sunday when one of them decided to crow.  We were unable to drive it up to join it's 'brother's', so the unlucky fellow has become the first grain free chicken grown from our yard to feed Ellie, and the ultimate homemade chicken soup for healing.

Exciting times around here.  This is a hard won battle in the fight for safe food to feed Ellie, and one step in a larger plan.  Stay tuned for more chicken stories as we supply our kitchen table....and hopefully those of some others.

Note: If you are looking for information on raising chickens, please check out this book by Harvey Ussery.  I had the blessed privilege of learning from him for an entire day at the WAPF conference in Dallas.  His information and teaching has been pivotal in our success. 

If you are looking for more information about our grain free chickens, please hop over to my new site where you can find the details: http://hopecentric.com/our-grain-free-chickens/

Bok Bok

We have 14 chickens that are about 6 weeks old. They are currently on a soy free and corn free feed, and I am occasionally feeding them grain free feed that I have created. Within the next couple weeks I hope to have them grain free. The goal is to get some laying hens for grain free eggs. My thought today: if we have gone through all of this and she can not have eggs I will certainly kick something.

We have a freezer full of soy and corn free chickens, and tried the first one out this week. After one day of just the broth and no meat, Ellie stopped pooping. Is it the grain they were fed? Is she just having a hard time with a new meat? is it....? Here is where my brain is stretched. Here is where FPIES 'pull the food' clashes with GAPS. Do we push through? Do we stop? Is she having an IgE or IgA allergic response? Is it only intolerance that can be pushed through? Is it the grain? The never ending guessing game.

Ellie has been on the same few foods for several months now. She gets approximately 8 to 9 cups of food a day. In that giant half gallon jar I mix 2 to 3 cups of meat puree, 1-2 cups skinned and boiled zucchini puree, and the rest bone broth. In addition to that she gets 1 scoop of Gut Pro probiotic, 1/2 teaspoon fermented cabbage juice, and 1/8 teaspoon of nystatin powder mixed in to her bottles daily. We also include liver. We have spent an incredible amount of time ( a couple months) trying to get raw egg yolk into her diet without success. It is time to try some new things.

The constipation from the chicken is giving me the impression that the egg yolk will be a hang up, too. Other moms have said they had to start with one drop of egg yolk a day in order to build up the tolerance slowly.

I think we are going to change our plan of action. Instead of continuing to trial one thing at a time for several days, and attempt to build up egg, for example, we will add a very small amount of something, and the move on to something else. She has eaten a few things on 'accident', like a raisin last week, without large response at all. This shows healing has been taking place, so time to start over. Back to the beginning to take a look at some of the things she had a hard time with before. Healing takes time, and clearly Ellie will need lots of just that. But I am hopeful! Another FPIES mom and friend has progressed her twins at an amazing pace with GAPS, and I am hopeful for Ellie. One main difference - her twins do not have a corn intolerance. If you would like to hear their amazing story you can read here: An Advocates Tale

So for now, we try to push through the chicken constipation by increasing the probiotic and fermented cabbage juice, and then choosing a new vegetable to try. Here we go!

Ellie's Chicks

The hunt for corn and soy free eggs for Ellie has pushed us towards our own backyard chicken flock. It is not my dream to have a morning and evening chicken routine, but $10 a dozen is not realistic for the budget. In our best attempts to eliminate the soy and corn influence, I purchased fertile eggs from a nearby farm. After 21 days of anticipation we hatched our own heritage chickens using an incubator and a lot of excitement. Starting with 24 fertile eggs, we were happy to end with 14 baby chicks. In only a matter of days Moriah was naming them, and somehow telling them apart.

Here is a picture of our eggs before hatching:

Since these chickens were so incredibly important for Ellie's nutritional needs, I contemplated sitting on them myself. The result was me up at 3 a.m. as the first chick hatched, and attempting to catch it on my iphone. This is a slow and amazing process! Working hard to get the videos to upload but having trouble with blogger.

It will be several months before these chickens start laying eggs for Ellie. In the meantime I am hunting down information on feeding chickens a grain free diet, and figuring out how to tell the roosters from the hens.

Rotten Eggs

Over the last 5 weeks or so we have continued to add raw egg yolk into Ellie's bottles. The chickens where these eggs were coming from had been switched to soy and corn free feed 6 weeks prior, which seemed reasonable since I could not find information anywhere on how long the corn or soy would stay in the chicken's body. We have not given her anything else new because we have been waiting for the egg to adjust and for her to return to baseline, though we have increased some of her supplements a little bit. As we have waited, she has not gotten better, but instead she has gotten worse.

She started out with improved stool, showing proof that she needed the nutrients. But over time it has progressed through the stages slowly - looser stool, to diarrhea, to funky smell, to acidic burn her butt, to this week turning red and showing signs of blood. I was horrified. It has been a LONG TIME since we saw red poop.

God does work in some mysterious ways, because in the meantime our egg guy went missing and we have been looking to source out more eggs. Enter two local families who verified the need for soy and corn free feed from day one, and I then researched to write a post on allergens in meats for my website. We made the decision to have our own backyard chickens, which led me to a local farm that raises heritage chickens, soy and corn free. She has been an amazing resource and we pick up 5 chicks and a couple dozen fertile eggs tomorrow morning. This then created the need for feed, to which I contacted the supplier that was recommended by one of our favorite local farms. (Jubilee Farm) is growing our meat chickens. I asked the feed supplier my question of feed and how long it might stay in the chickens system, like I have asked about 5 MILLION other farmers who have known nothing and guessed anywhere from 2 weeks to 8 weeks. The result? She discussed with her nutritionist and used her own knowledge and experience to tell me that it takes an egg over 3 months to grow and mature, and that there is most likely no way to remove soy or corn feed from a chicken's muscle once fed it. They then pointed me towards the USDA organic chicken regulations for more information.

DOH! ok...so. ALL of that to say...did you see that long chain of connections that I was led through in order to get that little bit of information? If I had gotten it in the beginning, I am not sure we would even be working on our own backyard coop. And DUH....I did not even think of checking already established regulations. Sometimes the government can be a resource? Who would have guessed? ;)

So in summary, we were still feeding Ellie traces of soy and corn. We pulled the eggs and are restarting new ones today that are free of corn and soy for generations. And I will need to rewrite my resource article on the website because there is more information out there than I had previously found.

I just keep reminding myself that we are only four months in. It took us a month to wean her from her formula completely, and then get started on GAPS, leaving four months that we have been working on healing her. These set backs are minor, but a whole-heck-of-a-lot-of work!

Bring On The Chickens

We had this great story of how I put a post on craigslist and an amazing farmer up in the Apple Hill area responded, telling me he would switch all of his layer and his meat chickens over to soy and corn free feed. We chatted chicken and eggs and Weston A Price Foundation, and about the industrial push for feeding animals corn. He was super kind and gave us a great deal on 6 dozen eggs that I picked up from him each week. In fact his wife was a charter school teacher, like me.

And last week he disappeared. Sounds a bit dramatic? Well,.....he did. He was a no-show for our usual pick-up appointment, and he returned none of my emails, texts, or phone calls. I emailed his business email, checked his website for catastrophic events, prayed nothing bad had befallen him or his family, and then his cell phone was disconnected.

I can not even begin to say how BIZARRE this has been. I have contemplated driving to his house, but have felt that may not be the best choice. And the saddest of all was being forced to remove his farm from our list of corn and soy free resources. I looked forward to highlighting his farm and his kindness on my just-getting-started website, but now I have to remove his contact information entirely. That to me is truly sad.

We are rationing out the eggs we still have in the fridge while we search for a new source, but so far we have found nothing. I have even sought to have some shipped from out of state. As a result we are being pushed towards owning our own chickens much faster than we had anticipated. Ellie needs the egg yolk to help with her healing and complete her nutritional needs. We can not continue to rely on someone else.

We checked country regulations and we meet the lot size requirements by exactly 135 square feet, so we have begun our planning, and hopefully within the next week we will be moving forward. But not quickly enough to have eggs for our Ellie, I am afraid. What a sad world we live in. What a frightening place when even the farms do not know of an alternative for corn. This does not comfort me when I think of Ellie's future. It pushes me back towards the continued internal debate: pray and know God will provide, or get moving on providing what we know we need. This time the answer was given to us - so bring on the chickens.

Corn Part 2 - On To Eggs

One of the most ridiculous things to find corn free is meat and eggs. We found a local farmer who has switched his eggs over to being corn and soy free after receiving an email from me. When I asked him why, he said he had already been on that path. I am so grateful!

We have switched our family over to his eggs which are completely comparable in price to conventionally fed eggs found at the farmer's market. And I have waited and waited and waited and WAITED for the right time to feed them to Ellie. We planned to start with the raw egg yolk (the proteins in the yolk and white are different, and the yolk is particularly rich in nutrients and easy to digest).

The day before giving her the egg yolk she was gifted a balloon from the supermarket. We spent the day telling her to get the string out of her mouth. She kept putting it in sideways and sucking on it. That night she complained of her eczema and kept scratching at her arm creases and the backs of her legs which were flaring up. I grabbed a small Melaleuca Tea Tree oil product from the pantry and rubbed it on those spots. She fussed. I thought it was odd since tea tree oil always helps my eczema, but wrote it off to it burning.

The next day we started egg, but she was acting a little funny. About mid day I noticed she had red marks on the sides of her mouth. The string from the balloon had left marks. Well, burns actually.

These pictures are a bit grainy, but you can still see the corners of her mouth and her reaction face.

What could this reaction possibly be to? None other than corn. One latex balloon powdered with corn starch left burns on her face.

I put the breaks on the egg, and rubbed my own eczema with the tea tree oil. It itched! What in the world? I flipped it over and on the back in the most microscopic print were 'other ingredients'. UGH. I knew better than that! And what was listed? Wheat germ and corn oil. Into the garbage it went.

The good news is that it only took her about 32 hours, one fussy night, and two reaction poops to move past this exposure, compared to what used to be weeks of recovery. Hooray once more for healing. Today she would point to the scabs at the corner of her mouth and say 'owie', but they were noticeably better. And we braved forward with egg yolk once more today. So far so good!

The Never Ending Corn Story: part 1

Each step adjusting to Ellies FPIES diagnosis has been a steep learning curve, and each home change has required serious work. Except for corn. Corn granted me my first official panic attack.

Ellie recieved her diagnosis of extreme corn intolerance from her allergist. He read the results of her atopic patch test (APT), and knowing her extremely limited diet of amino acid based formula and pit fruits at the time, he sharply turned to me and said WHERE is she getting corn??? Of course I replied that she wasn't. I was not feeding her corn! He insisted she must be. He believed the reaction could not be so severe without continued exposure. YES she is. He insisted. WHERE is she getting CORN!?

I was offended! I was baffled! He promptly reached into my diaper bag and grabbed her can of formula, flipped it over and began reading the back. I was ticked he had grabbed into my bag.

RIGHT HERE, he declared. The FIRST INGREDIENT. He tossed the can at me and then said: We have to get her off of that. What else can she have?

My jaw hit the floor at that point. Well, lets see. She couldn't have breast milk. She reacted violently to two other amino acid based formulas. And oh...that's right. EVERY baby formula made in the existence of the WORLD (this is not an exaggeration) has a corn base. Yup. Thats right. Corn.

This was not going to go over well with the GI. I knew it. It was very rare to find an allergist that believed a child could have a reaction to the highly processed corn base in the hypo-allergenic prescription grade formula. But hey, thanks to Ellie we are all about breaking those assumptions. After all, the formula is HYPO allergenic, not NON allergenic. And if it was not possible to react why would there be so many different ones with various degrees of soy oil, MSG, and other lovely ingredients?

I was suprised to find the GI somewhat supportive. The actual problem was figuring out what to feed her. I was also surprised that it did not go over very well with me. At this point I should have been used to adjustments.

After this information I headed home and began to process how to remove the corn from my home. I googled and found some living corn free sites, and then all of a sudden I couldn't breath. I actually had to get up and pace back and forth, tears streaming, and feeling suffocated. I called a good friend and said help! talk me down! And she was able to...somewhat.

Since that time about 5 months ago, I have found my fear and anxiety turn into anger. A corn allergy is a frightening thing in today's world. Lotions, shampoos, preservatives, plastics, medications, salt, bottled water, department store meat, disposable diapers. Citric acid, dextrose, distilled white vinegar, fructose, vanilla extract, MSG, alcohol. All of these things can leave burns on Ellie's skin. Our entire home has been flipped upside down.

A Quick Soap Revisit

I have been asked a lot about what soap we have found and use for Ellie. At this point I would love to say that I make her funk free soap at home, but really? Who has time for that?

We have actually been the most successful with Ivory Original bar soap. Its not great on her hair, and sometimes we fudge with a quick conditioner rinse using her sister's organic/natural conditioner and it does not seem to cause too much disruption. I have been told you can use the Ivory bars to even make laundry soap but we have not gotten there, yet, either!

For a break down on the Ivory soap story and ingredients here is a link to my previous post:
CLICK HERE!

Ellie's Current Progress and Plan

We are about 5 weeks into the GAPS protocol for Ellie. Let me back track and explain what we have been doing in summary (watch out for poop talk!)....

Taking my first email from Dr. Natasha I began a new food plan for Ellie. I began the research for grass fed, organic meats that were also soy and corn free. I have done reading on allergy boards where others say that they can react to major triggers when eating meat of animals that have been fed them. I also know another FPIES mom whose son reacted to the corn in eggs. I was able to find lamb, beef and pork to start out with.

We started slowly, adding one teaspoon at at time to her bottles. We did not push her, and a couple of times we had to adjust the bottles in order for her to take them. It took a couple of weeks to get her off the formula entirely, and the last few days she really held on, wanting that scoop.

When she got down to one scoop of formula in each 8-9 ounce bottle, I began using the Vitamix to liquefy the boiled meat. I added 2-3 ounces of meat to her bottles. She ate around the clock, every 1 hour to 1.5 hour, 24 hours a day. This coupled with the need to warm her meat smoothies on the stove top has been rather restricting, and exhausting.

To date she has had these meats and broths: beef, lamb, pork, duck, venison, buffalo, and chicken. She liked the lamb and pork, but gagged on the beef. It seemed to be a sensory issue since the beef had a much higher fat content. And she truly seemed as if she just did not like the duck. Imagine that. I marveled. She was showing preference with food, and she could afford to have an opinion on the matter. A milestone!

During this time we unsuccessfully trialled a probiotic and have not had her on one still. I also did my best to add a teaspoon or so of boiled beef liver to each bottle to add vitamins and nutrients. Including bone marrow, skin, and liver in each bottle was a must for healing according to Dr. Natasha. What she failed to mention was the GAS that liver can cause! whew!

It took about 3 weeks for her stool to begin looking more normal (another milestone), though very dark and tar like. This was my cue to move forward. I purchased organic zucchini, and following direction from Dr. Natasha, I peeled it, de-seeded it, and boiled it to death. I then put it in the Vitamix with broth and liquefied it.

After being so successful with the bone broths and boiled meats, I have no idea why I was so nervous when beginning vegetables, but I was. It was food trail panic all over again. We had no safe vegetables at this point. Scary stuff!

I started with one teaspoon of zucchini in her bottles, gradually increasing it to 2 ounces, over the period of about 3 days. And she loved it! For the first time in her life she began to have regular looking stools, and they increased in frequency. After three days we added white and yellow onion, boiling it down and pureeing it with the zucchini. She really seemed to like this addition. I think it added a sweetness to the meats. We did this for two days and she began pooping every day! It was poop-party time in the Sawatzky household!

(I have not compiled all of my notes so I hope I am getting the time frame correct...)

Day 7 I added peeled and boiled carrots to her mixture. She got a little more gassy and seemed to have something a little bit off, but nothing to be concerned about. We waited for the poop and it looked orange and I got a bad feeling, but nothing tremendously noticeable.

Day 8 I added leeks. Boiled and pureed. And there was some funny poop. It was soft and pliable but looked like deer poop (pebbly). I panicked. Is this constipation forming? I headed to the Bristol Stool Chart and it was actually leaning towards looser stool, which worried me even more. A reaction??

Day 9 I threw in some garlic. And later that day she showed tummy trouble. And had the same concerning deer-like poop. We were moving too fast. I knew it.

I whipped back out my emails with Dr. Natasha...and yup. Move slowly with the vegetables. Why? The fiber in the vegetables may not be well tolerated and her intestines need time to adjust. The bone broth and pureed meats are the easiest thing possible for human intestines to digest...needing virtually no digesting at all. Adding vegetables was shaking things up a bit, and in fact, I made note that we saw more 'die off' type symptoms.

Day 10 We started over. Zucchini only. Waited for the poop. Back to the mushy blob.

Day 11 Zucchini and onion. Looked good.

Day 12 Zucchini and onion. Looked good. And considerable less stink. I took a second look at the Bristol Stool Chart. Oh ....wait. The type of stool she was having is considered OK? Oops. Hmm. Well, better safe than sorry!

Yesterday: We added back in carrot. Only carrot. No zucchini or onion. I want to see what happens with just carrot.

Today is day two...and so far no poo. (hey that rhymes!) Here we hold. She has been gassier and fussier, and I can't help but wonder if the sugar content of the carrots or the beta carotene is of concern. I also remembered that way back 'in the day' I prick tested IgE positive for carrot allergy. Interesting. And another thing...I am about 99% sure that we never trialled carrots prior to diagnoses, but my record keeping was spotty at best in the beginning.

Another interesting thing to note is that with the introduction of vegetables she began sleeping longer increments at night. Hallelujah. Waking up to feed her more often than a newborn for four weeks was making it difficult to function during the day, and I am still working my 'real' job at 75%. Ugh. I needed sleep so these new four hour chunks at night have been heavenly. Except for her new problem of peeing all over.

And today we wait for the carrot poo. This is where the GAPS individualization comes in to play. Certain vegetables are better than others....certain vegetables are easier to digest than others....certain vegetables should be avoided by anyone....and certain vegetables will need to be avoided by Ellie. Her immune system, her environment, her inherited toxic load, her intestines, her history of food trials, her foods she had already eaten and failed. All part of the puzzle and part of the protein intolerance game. But it feels so much easier to handle with the progress she has made!

Sometimes She Falls Down

Over the last 18 months there have been many things that in retrospect look a lot clearer. Is that FPIES? Or is that just life? Or is that being a parent? There are a lot of things that I wish I had done, or not done, or just done differently, but the facts are always the same: I did the best that I can with the information I had. This is the story of life.

As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.

As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.

The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.

I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.

She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.

All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.

As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.

What Does She Eat??

Like other FPIES moms, I get this question all the time. If she doesn't eat food, then what does she eat? What do you mean she cant have FOOD? Doesn't she have to eat meat or eggs or nuts to get protein?

There is another FPIES mom who has been kind enough to humor my ignorant questions and help me through my 90 degree learning curve since our family has been forever changed by FPIES. This moms is a nutritionist- she does it professionally! And I will be forever grateful for her knowledge. In addition, her son who is a little older than Elianna, has walked a similar path with a severe intolerance to corn. His path and his mamas has been one of many mountains, and has caused much more long term damage, something we have been able to avoid so far with Elianna.

She just completed a blog post about what her son eats, and it answers a lot of questions that I get all of the time as well. Elianna's current diet has been tailored to her specific FPIES, but Sam has had the priviledge of having a mommy that has known the benefits of hemp and coconut long before I even knew they existed.

Please take the time to read this post of hers. It is a very similar situation to Ellie's, and will give more insight for those of you who are looking to make adjustments for your own FPIES child.

Day >>10<< of *REAL* Food!

Today was day 10 of real food for Ellie. Since I have spent every waking moment on the internet, on the phone, driving to various stores and markets, and in the kitchen cooking, it has gone by extremely fast. This is a good thing because if I had any more time to think about it I would have vomited from anxiety.

Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.

Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.

This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.

Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.

Ellie Had a Little Lamb!

While cleaning the freezer I was excited to find a few jars of beef broth that looked unbroken. This was great news since we were out of lamb and fish. I very carefully removed three unbroken mason jars of beef broth from my garage freezer, and being careful not to bump them on anything, I placed them in our bathtub to thaw. I was able to save them, so I did not have to make beef broth again right away. My mom was kind enough to make the fish broth for me the first time, and offered to make it again, which helped restock my broths. All I had to remake immediately was the lamb.

I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:

Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.

The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).

We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!

I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!

I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.

To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.

MY FPIES BABY IS EATING MEAT!

Fearful Mommy: part 2

We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.

By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.

The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.

What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.

By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.

We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.

I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.

Ain't Nothin Urgent About Urgent Care

I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.

The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?

I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?

We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'

'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.

her: 'Oh. OK. Is she on any current medications?'

me: 'She is on albuteral in a nebulizer.'

her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'

me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'

her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'

me: 'Is her diagnosis even IN her file?'

her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'

me: AAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!

OK not really. That was only going on in my head.

her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'

me: 'what should it be?'

her: 'oh, 100.'

me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'

OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.

her: 'The doctor will be right in.'

And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.

Dr.: 'Sounds clear.'

Elianna: *cough. hack. gag*

Me: 'OK. So it is not a bacteria or a virus?'

Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'

me: 'so this is a side effect of her reflux?'

Dr.: 'I don't know. You should follow up with your primary care.'

And he exited.

Clearly I chose the wrong profession, because he got PAID for that!

Week by Week, Day by Day

The first week of January Elianna had symptoms of a reaction from a bath soap with wheat protein. By January 4th she was having a typical upper respiratory response to the reaction which looks a lot like a bacterial or viral infection. Off to the pediatrician we went for a nebulizer refill (nebulizer medications do not have corn, while all of the inhalers and asthma medications I have researched do). We ended the almond milk and went back to all formula in an effort to help her get better and eliminate any possible complications. And so ended the first week of January.

Here comes week two. I noticed that Elianna's eczema was the worst it has ever been, and that we truly needed to focus on getting her a safe lotion. That led me to the Eucerin, which she ate during week two. For details on this incident see my previous post here. I finally decided that anyone who ate lotion would not feel very good. I decided to put my energy into finding an oil that might work, and thus we trialled almond oil and it was a pass!! It has not completely fixed the problem, but so far we have seen some good improvement.

With the arrival of week three and no more 'prunus' foods to go with, I was feeling a little bit brave and purchased grape juice from the store. All of her safe foods are now out of season, and the choices are limited. I understood grapes to be one of the few fresh fruits you can buy in the store without the traditional corn, soy or dairy derived coating. Soooooo..... daring the issue of cross-contamination, I handed her a cup of grape juice on Monday morning. After two big gulps and about 10 minutes she began to have a glazed look and just sat in her highchair and stared. This prompted me to get her down, and enlist Jason is the observing. Then the reflux coughing, urping and vomiting started. Nothing projectile but she cried in pain. At about 25 minutes she began pointless running in circles around the kitchen island, which was very bizarre to watch. Around and around and around and around. This lasted for about 5 minutes at which case she stopped and we noticed that her face and around her eyes were getting puffy. We stood and watched her eyes swell within a matter of minutes. Another 20 minutes later it seemed to decrease and she was feeling better. Except her eczema was bright red and raised all over her body, almost like hives. Truly bizarre and unlike the reactions we have had prior.

Hooray for January. And, oh, yeah.....that was just the start.