Retracing

One thing that is absolutely for certain about our healing journey with Ellie, is that some things are just hard to understand until you live through it. Isn't that so true for life in general? Often I find myself just shrugging and stepping out, figuring we will make sense of it when we get there....or not. Sometimes it never makes sense. Such is life.

Periodically I have heard other mamas talk about retracing.  It has been a hard one to wrap my brain around - this idea that as healing progresses and the body is more equipped, it deals with unfinished business from the past. Sounds even more hokey in writing. 

I have been attempting to learn more about sensory processing and how to help Ellie with her missed milestones and gaps in attachment. She missed out on quite a bit from 0 to 18 months of age.  Even though I did everything possible at the time to help her sick, hurting, and malnourished body, the pain did not stop.  The result was an attachment issue that until now I would have naively assumed applied only to children without parents sitting in orphanages. Oh, the ridiculous assumptions and generalities we make based on our limited experience.

About 2 months ago Ellie began to regress emotionally.  She began to do weird things, like want to crawl,  baby talk, and be carried sideways by me like an infant. At times she would just simply sit and cry, wanting to be held.  Sometimes she would start yelling "mine! mine!" She had separation anxiety. And I began to realize that she was working through some of the things she missed. Her behavior was about that of a 12-14 month old.

Interestingly enough, this time frame coincided with the same time that her health began to really take a nose dive. By 16 months old her complicated symptoms were at their worst, and by the time we started her on GAPS at 18 months old she was critical.  This 12-14 month mark was a time of developing unexplained respiratory symptoms, rashes, and a LOT of diarrhea. I remember her poor little bum was so raw and bleeding from her green acid poop that she would scream whenever she had to pee.

About 1 month ago Ellie started to get sick. There were a lot of factors, but the decline began about the same time our hens stopped laying eggs and her daily egg intake went down. She kept getting sicker so I sought out another source for eggs.  I found soy free, corn free, wheat fed eggs and figured that her need for the eggs seemed to out-weigh the possibility she still might have an issue with what the hens were fed. I was wrong. Eczema, diarrhea, reflux, then on to vomit. We don't know whether the eggs were the main culprit, or the honey and fruit I gave her access to prematurely, or the addition of winter squash, or the other environmental toxins she was dealing with (for example I put up one of those white boards at the same time, DUH mommy fail!). Most likely it was all of it rolled into one big episode of pushing her too far.

Nightmares, toxic all night pee, sweet smelling breath, cradle cap, constant inconsolable crying...it was all a strange flash back. Her neurological symptoms were getting worse, and her verbal was disappearing.  Environmental exposure pushed her into a daytime seizure and I called it quits. Though we had pulled the egg it was not enough. Her body was so overloaded she was refusing coconut oil and fermented coconut water.  Back to meat, broth and a little bit of summer squash we went. 

Daddy had a hard time with this.  He was adamant that after all this time she did not need such drastic measures, and determined she was healed beyond this. It was hard for him because the symptoms combined with the food changes, sent us reeling backwards to a time we longed to be in her distant past. We had to stop and evaluate and realize that it was not as it appeared.  It was the equivalent of Ellie getting the flu. What do we ALL need and benefit from? Broth. Soup. Basic. 

Brenda at The Well Fed Homestead published a post about how she got physically ill while helping her children heal missed milestones.  It got me thinking, and I made the observation that Ellie's symptoms were entirely pre-GAPS, and coincided to her behavior changes as well. Bizarro. Right on down to the funky respiratory issues and crazy horrible eczema. As I tried to clean her poor burning butt I thought 'boy, this is harder with a screaming, talking toddler'. Diarrhea! Up until now she has never had diarrhea like this on GAPS. She has battled constipation for months, and this is not great for progressing in the healing category. Her systematic yeast was out of control again, and this time her body was doing what it was supposed to do by pushing it out. Retracing. Back to a time when it was not equipped to respond in such a way. 

Remarkable! This was the sign that she was entering another stage of her healing journey. Progress in illness? Illness that is resolved and that her body was allowed to fight and work through. Illness she was nutritionally equipped to handle...finally.

It took about 3 days for her body to begin to reset. That is astonishing after the length of time she has needed in the past. Her eczema is almost gone.  Her distended belly is gone once more. Her words are all back. That funky breath smell still comes and goes. She is guzzling coconut water and eating coconut oil once more. 

She has come out the other side sleeping longer at night (will it stick?), not peeing as much at night (sweet!), and with loose formed stools multiple times a day, instead of constipation (say what!). And she finished it up by getting a snotty virus that she has shared with the rest of the family. I can not even remember the last time she had a snotty, respiratory anything that was not toxin or food related, causing us to bust out the nebulizer, inhaler, or make trips to have her oxygen levels checked.  She seems to be working through it this time just fine, all on her own.  

I think I may be finally starting to wrap my head around this idea of retracing. 


photo credit 1: WilsonB  photo credit 2: telepathicparanoia

Eggs: A Labor of Love

Eggs.

Grain free eggs.

Eggs from hens that were fed no corn or soy 6 months prior, and I drove 2 hours to pick up once I found them.

Eggs we hatched, and chicks we raised into 6 prized grain free hens on our suburban lot.

Eggs which Ellie is now eating!!!



After 18 months on stage 1 of GAPS, Ellie is now eating egg yolk, and in GAPS land that means she is on stage 2.

STAGE 2!!!!!!!!!!!

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.

More Than Poo

Did you take a picture of that poo? What did it look like? What do you think of this poo? What was the smell? Did it burn her? Did you file it? Make notes on the fridge. Was there mucous? oooooh the life of FPIES. You get the top half (vomit) and the bottom half (poop). And the joke among moms of PI kids is that we have poop portfolios. We take them to the doctor with us. We compare. We use them to guide food choices for our kids. We become obsessed!

And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.

We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.

For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.

Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.

Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.

The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!

The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.

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!

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!