So Far So Good

At least a month ago Ellie reached the maximum dose of her probiotic. This would sound fantastic except for the fact that this probiotic is not strong enough for her healing, and that we have been using it as a 'gentle start'. Simply put, she has been receiving a maintenance dose while we decide how to push forward. Then she had the acorn squash incident, and now the elk broth incident, and it has made her fungus issue glaringly apparant.

Because that is what I do - fall back into old patterns and often forget the obvious - I had gone back into waiting for Ellie to be symptom free before starting her on anything new. This is one constant brain battle when going GAPS, because conventional medicine is based on symptoms and not on the root. By the time I 'found' GAPS, I was trained to watch for baseline, which is the term used to describe an FPIES child who does not appear to be symptomatic.

The problem with this is that it does not take into account that sometimes we have to get worse before we get better, or that in the case of bad body flora and toxins, the body has to get rid of them. An obvious and often unrecognized example of this is a fever. The fever is a natural immune system response used to burn the tar out of any little buggers that have invaded the body. Allopathic medicine prescribes fever reducers to help us feel better, yet to medicate a normal fever can handicap the natural healing process.

In Ellie's case, I have been waiting for her recent illness (from elk broth or possible virus) to clear before moving forward. I have been moping and bummed and watching the calendar thinking of wasted time. And her eczema has not been going away.

While talking with another FPIES GAPS mom, she mentioned the next steps for her kids, and commented that 'they are going to get sick, but that is just the way it is.' It was a jarring comment for me. It made me realize I had fallen back into waiting for baseline. You see, when Ellie failed acorn squash it became very very apparent that her eczema was largely due to an entire body take-over of fungus. The next steps are to get that under control, or she will never be able to eat more foods.

Raw organic coconut oil has amazing anti-fungal properties, and is the next step we have decided to venture forward with. I have been waffling on which coconut oil to use, and over the last week one of our favorite coconut oil companies (Tropical Traditions) had a fantastic sale which included a free jar of their top raw organic coconut oil. So I grabbed the jar and decided it would be the one.

Since we have been using coconut oil on her skin for months now, I did not take the time to do a sensitivity test (GAPS lingo for patch testing).

Today is day three of our new routine. I have added 1/4 teaspoon of coconut oil to one bottle a day. She also gets a full body rub down of coconut oil every morning, and additional applications for problem spots throughout the day as needed.

So far so good. She is tolerating it very well, and tomorrow I plan to increase her dose to 1/2 teaspoon. The goal is to get to 1 teaspoon per day.

Such a wonderful thing to feel like she is making progress once more!

Sleep Is For Sissies

While watching television the other night I heard the quote: We will have plenty of time to sleep when we are dead.

Ugh. Boy did that stick with me! But there is no secret around here that I most certainly love (and miss) my sleep.

When you have a newborn baby, or even an infant less than a year, everyone expects you to be sleep deprived. They look at you, and grin, and oogle over the baby, and reassure you that at some point it will get better. And maybe offer unsolicited advice on crying it out, scheduling, or shoving their bellies full of hard to digest foods (rice cereal) in an effort to make them sleep longer.

My situation has been quite different now that Ellie is well over 2 years, and still wakes at least three times a night. Most people assume she sleeps right through the night and that we are out of that stage. This was illustrated recently when I met a new group of moms. The conversation was awkward (and a bit comical to me). It went something like this:

Group of moms of various ages and kid ages.
"it has been a rough week with illness. child #1 has not been sleeping at night and I am exhausted."
"oh yes, sleep is so important. that first year is so rough until they sleep well."
conversation continues. blah blah. sleep sleep...infant infant...so hard so hard...perfectly normal, acceptable, typical mommy talk.....

Meanwhile I think to myself: this new group of women do not even know me, and I am not going to dive into an entire conversation about FPIES. I am so tired of conversations revolving around that and explaining what 'allergic to all food' means. I am just going to listen, nod, and pretend my situation is the same.

Their chatting continued, until this lovely group of about 4 women realized I had just listened, smiled and nodded. I think they thought I was shy, and were showing effort to include me. At that point I realized my plan was not working.

One of the moms turned to me and asked: "how about you? how old are your children?"
I tried to be shy (I have to purposefully put effort in to do that) and said "6 and 2 and a half."
"and do they sleep well?"

MAN. UGH! Dang it! Now what?!

I took a big breath and mumbled as fast I could something like:
"no actually my 2 year old has an extremely rare immune system condition and is on a liquid diet and she wakes at least three times a night"

Silence. And a few 'oh's' and 'oh so you don't get sleep either'.

What in the world was I thinking? Perhaps I was trying to live back in the new normal, but this strategy did NOT work and only made these poor women feel more uncomfortable around me in the end. Lesson learned.


As for Ellie, dare I say it....she has been waking up only TWICE a night instead of THREE times a night for the last several days. This has come after the elk-broth-or-virus problem, so it is not uncommon for her to sleep more when recovering from a food issue. Except this time we are over a week out and it is still going on. Could it be? Could she finally be moving into better sleep?

She has also been eating less at night which I find interesting.

This coincides with a couple of other new developments that may indicate another stage in healing, but I am too afraid to believe that entirely. What it has done is make me begin Mission Get Ellie To Sleep Part 1.

Dr. NCM has said repeatedly that some of her patients are so sensitive to EMFs that they will not sleep until even the refrigerator is unplugged in the house. What is Ellie? A GAPS patient. And one of the most sensitive ones at that. So today I unplugged what I now know to be our extremely dangerous Ghz cordless phones, and plugged in an old wall mount that was graciously gifted to us. I even pulled the batteries out of the handsets.

Will it make a difference? We will see. What I know for certain is that it wont HURT, and can only make things better for ALL of us. At some point I will listen to the WAPF Conference recording on EMF's for more information. For now I move on to Mission Get Ellie To Sleep Part 2.

Forever Guessing

While we have more answers after GAPS than we do prior, there are still some times we have to just shrug and move on. Sometimes we just have no idea because there are too many factors. This time we are forced to stop and figure it out.

Last week Ellie had a fever and developed respiratory problems. She is still recovering. I blamed the pork. Then I thought it might be the elk broth which I had assumed was safe. Then her older sister got croup, and the age old question 'is this her first confirmed virus' surfaced again.

Investigation revealed the elk came from a ranch where they were supplemented with hay over the summer by staff. Stupid hay. Hay is an undefined combination of grasses used to feed animals. Hay is not a specific type of grass. Hay could be corn, or who knows what else. Stupid hay.

So now we wait for the symptoms to go away, and try to make a decision: retry the Elk or move on. Retry Elk and she fails shows us it was the elk, and will free up quite a bit of freezer space. Retry Elk and pass, and she has had her first confirmed virus, an amazing reassurance that her immune system is healing.

Normally the decision is not that hard. One wonderful thing about GAPS is that we generally don't talk in terms of food fails anymore. Instead, we say she isn't ready...YET. This time the decision feels different because she is begging for food and I want to get a move on. And we don't normally have hard respiratory reactions like this. In fact, this is the first since starting GAPS, which petrifies me that corn is indeed the culprit.

Corn. The one thing that may never go away.

Pulled Pork

The only meat (besides grain fed chicken) that Ellie has had trouble with has been pork. While she couldn't tolerate chicken in the beginning, she seems to do okay with corn and soy free, grain fed chicken broth now. Pork is a different story.

I have no idea if it is actually pork itself, or if it is the grain it is fed. The pork we purchase is pastured, as well as corn and soy free; but it is also fed grains. I have noticed that every time we feed Ellie pork she eats less and seems to just generally not like it. I figure she is allowed to not like a meat or two, and kept feeding it to her on a rather large rotation.

The last two or three times we gave her pork she had some suspicious poo, and I told her daddy pork may actually be more problematic than we had thought. This time it was pretty obvious. Pork broth and pork meat combined to be pork constipation and then reflux and then crying and then bloated belly and then...well, you get the picture. Yesterday she woke up from her nap with a 101 fever which is extremely rare. Every fever Ellie has had is tied to a food fail. (Insert note here that we also started her on elk broth for the first time yesterday, but her reaction had started prior to elk and was too quick to have been elk.)

I threw her in the bath with some Epson salts, and gave her an enema. Fever came down, and we received a diaper filled with confirmation that pork was not her choice meat. Darn. Is it the pork or is it the grain in the meat? Not sure. But that is OK. She has more than enough meats to rotate through, and we won't even dwell on it. For now, we pulled pork.

Side Effects

We have noticed two interesting developments with Ellie lately. The first is tied to her visits with the physiologist, and the other with her recent food 'fail'.

Ellie has been in pain since birth. We used to believe it was solely because of her tummy; after all, pooping blood can't feel great. When we took her to see the physiologist about 6 weeks ago we learned that her right femur was completely out of the socket and could have been from birth trauma. That means she has been in pain for certain! Shortly after her first appointment we noticed a change. Our strong Ellie who normally was silent when she fell down or got a bump because shedding giant tears and wailing at the slightest scratch. We looked at each other and thought 'what in the world?!' It was if she had become hyper sensitive. It took us a little bit to realize that when a 28 month old goes from a lifetime of constant pain to none, a knee scrape must feel like quite a shock!

The second thing we discovered was that as Ellie's body battled the sugars from the acorn squash, she slowly lost her verbal abilities. Before the acorn squash trial she spoke in complete sentences, held conversations, and even told jokes. Granted I may be the only one able to understand, but it was there. As of about 4 or 5 days ago her sentences sounded like: "ba-ka-mafaluk-cho-pen". It was the most puzzling thing ever.

There are actually studies showing this is the case with an overgrowth of toxic bacteria in the body. It has been linked to mental illness, autism, OCD, and a host of conditions. Some simply refer to it as 'brain fog'. For example, medical studies have shown that certain bacterias can have an opiate affect on the brain. The bacteria releases toxins when it eats, dies, poops, whatever. And in Ellie's case her overloaded body was working hard to rid itself of the toxins and kill off the overgrowth.

Prior to GAPS we often discussed regression in connection to FPIES, and how a food reaction may cause kids to lose words, fall down a lot, or other weird 'side effects'. We have not seen such a dramatic regression like this in Ellie until now - pre-GAPS or after. Quite frankly it could have been frightening to watch if I had not known what was going on.

Today is day three of her being completely back to normal. Eczema under control, eyes bright and shiny, and more than busy pestering her sister in every way possible. She is back to full sentences and singing songs, and being her usual LOUD self. We will wallow in it for the weekend before pushing forward in her healing once more.

Rock and Roll

We really did learn a lot about Ellie's healing progress from the acorn squash 'incident'. Ellie's hurdles for healing that are part of the cause of her FPIES include leaky gut (colitis), bacteria and fungus overgrowth, lack of stomach bile, and missing digestive enzymes that includes dissacharide deficiency. The purpose of GAPS is to do two things: detox and heal. Ellie's extremely limited diet is to help her intestines get nutrients that do not require digestion (the theory behind elemental formula), and rebuild from the inside out.

Intestines are full of villi. When those villi are healthy and nourished (they take a lot of nutrition to maintain) they stand up to touch food, and also participate in the creation of enzymes that break food down to be used. In ANY gut, too much fiber will damage these villi. For Ellie even a fraction of fiber will rip through the villi and scratch up the unprotected colon surface, flaring what we know as colitis, and creating ulcers and lesions. This can also result in blood in the stool. The colon also contains bacteria and fungus strains that are not present in the rest of the body. When this bacteria balance is off, which can occur for a million different reason, it also damages the colon. One of the most popular to discuss is yeast, or candida. Candida is a lovely little fungus that is spiral in appearance, and should it gain access to the intestinal wall it burrows it's little corkscrew-self in and creates holes. All of these holes allow for food that has not been properly broken down to enter the bloodstream where our most amazing blood cells create antigens and attack it because it isn't supposed to be there.

The last 9 months has been a time of 'gut rest' for Ellie. She has been rebuilding her colon wall, getting her bacteria under control, and regrowing her villi. Each time we introduce a new food we are testing that process to see how far along she has gotten. During the first several months of GAPS it did not take much and a new food would send her back to bloody mucousy stools and FPIES-like symptoms. The longer it has taken for her to heal, and the more foods we are unsuccessful with, we earn clues as to how damaged she is and how to help her. The discouragement comes from the fact that sometimes little (and big) bodies are so damaged and overloaded that they never progress past a certain stage. And with every new food she hasn't tolerated, and every new email to Dr. Natasha, she has implied this might be the case and to not fret so much because she could live, eat, and thrive for the rest of her life on a diet of animal based foods.

While I am thrilled she is getting every single nutrient she needs, a diet this limited sounds horrifying to any mother. While I am willing to accept it, I obviously hope for more. What we found with the introduction of acorn squash was HOPE that she was PROGRESSING. You see, Ellie did NOT have poop problems with acorn squash. None! This is what made us do the happy dance and believe it was going to be tolerated. What this means: she is healing her colon wall and her villi are regrowing! THIS IS EXCITING STUFF!

Now for the bad news.

What we saw next was different than any reaction she has had yet. We had stopped the acorn squash because I decided to begin rotating between zucchini and acorn squash. But even though we had stopped the squash, Ellie's poops began to get looser and looser, and more and more problematic. Eventually they looked like FPIES reaction poop with mucous, acid and horrible stink, but this took about a week. This in spite of not eating the food! And to add to the surprise, she developed full body eczema unlike anything we had seen since pre-GAPS. Bumps, blisters, oozing and cracked skin. And her super sensitive skin began reacting to everything again making it worse. At one point her legs from hip to ankle were covered in blistered, split, oozing skin, topped with a round of hives. Her screaming was all night long, and during the days she cried the most pitiful cry. What this means: the acorn squash fed bad bacteria and fungus and her body became overrun almost instantly. It was also a sign that she still was not producing digestive enzymes. (It was intriguing to watch the process from a step-outside-of-the-mommy-watching box. I could literally watch the bacteria and fungus take over her body.)

What did we do? Baking soda baths. Epsom salt baths. Lots of raw coconut oil and shea butter on the skin. I put nystatin back into her bottles and even mixed some of it into the shea butter to slather on her legs. At one point I resorted to a thin layer of steroid cream. That seemed to make the difference for her skin but left me feeling horribly guilty.

And I finally sucked it up and made a plan using information from the WAPF conference, and I finally emailed. Dr. Natasha. I was petrified to, because I was certain she would say once more what she has said the last several times - give up on the vegetables and go back for raw dairy and eggs. Frightening stuff for this FPIES mama! I was so relieved when I got additional insight from her that did not include heading straight for dairy.

So here we go once more. I'm ready to rock and roll. And in the meantime she has been drinking organic mint tea. Not a food perhaps, but she loves it, and we will take it as encouragement and something new!

New plan per Dr. Natasha's email and my mommy observations (more explanation to come):

1. Iodine painting.
2. New stronger probiotic.
3. Appointment with Dr. Natasha recommended GAPS doctor.
4. Introduce coconut oil for eating (instead of just topical).
5. Introduce fermented coconut water.
6. Try a new veggie.

The cycle of frustration always faithfully lands me back on my knees looking for direction, even though on the surface it seems odd to ask in a prayer what I should feed her. I have given that up as of a few months into GAPS, because who made her certainly should know best! So.....rock and roll, baby. Off to now find young coconuts. Here we go again!

Hold Fast

It has been quite the week+ for us as we attempt to help Ellie's body get the fungus back under control. The equivalent of about 5 ounces of pureed acorn squash over two days time created such an incredible bout of eczema we are still amazed. It has taken me until now to get myself under control as well.

There really is no way for me to express the let down that occurred when what I thought was a new safe food for her was actually not safe at all. After 9 months of such a restricted diet on GAPS I thought for sure the God of the universe would be kind enough to show her progress with acorn squash, and rejoiced at what I thought was an answer to prayer. As I watch other FPIES-kids-gone-GAPS pass up Ellie in the realm of foods and healing, it is easy to get caught up in questioning and wondering what 'makes her different'. Why in the world I always fall back to that is beyond me- Except there is no secret in (always) admitting that I would be the first Israelite back on the train to Egypt. I would be the first to shout: things are bumpy! this is not what I had planned! must not be God! load up - back we go! get your mud brick making gloves on folks!

Alas, I spent the last week sobbing in our huge green rocker while Ellie cried 'owie owie owie' all night long. I spent the week kicking the dirt, and throwing up my hands, and comparing our progress with everyone around. I spent the week re-reading books, and medical articles, and having zippo grace for my family, friends, and even that stranger at Target. Most often I was just standing somewhere and crying. This normal SUCKS. I even busted out my Bible and read through Job, just to try and get some perspective.

It is incredibly amazing to me how I can float through life in the middle of blessings, surrounded by love and being held so obviously in God's hand while He meets Ellie's (and the family's) every need, and yet when things get out of kilter and tough, all of that goes to the side and BAM-O! It's like a Batman comic book where I feel as if SPAT! CRACK! JAM! I'm losing the battle against an evil villain.

Oh wait. I was.

Yesterday I was not asking for a conversation when I finally heard God. He asked me about my altar. And He reminded me that my children are not my own. And as I was yelling "All aboard for Egypt!", He so faithfully stepped in and said "HEY! What makes you think that YOU are in control here and that YOU can see everything? At what point did you decide you love her more than I do? Or that regardless of all circumstances surrounding her in this damaged and decaying world, I was not in control? Hold FAST."

Hold Fast. Over the last two years I have often heard those words repeat in my head. They actually come from a song by Mercy Me where the chorus says: Hold fast, help is on the way, hold fast, He's come to save the day.

And as I asked forgiveness and said thank you for grace, I was reminded of this verse (Psalm 121):

I lift my eyes up to the hills. Where does my help come from? My help comes from the Lord, maker of heaven and earth.

Casting Crowns has done an amazing job of capturing this verse in a song which always brings me to my knees. (video HERE)

But enough for my pity party. Hold fast, friends. He is always on His way. Can't you see Him?

I Take That Back

It appears as if Ellie is not tolerating the acorn squash after all.

One hurdle out of the FPIES box is to stop relying only on how a poopy diaper looks. While I am a certified poop expert, and poop can give you some amazing insight into the body, it is not the sole answer. When dealing with an FPIES reaction, response to a food can be violent fairly quickly. Profuse vomiting and diarrhea are a pretty good sign that something is wrong. But on the path of healing, digestion slows down (like it should) and signs of problems are not just vomit and poo based.

At this point when giving Ellie a new food, we look at the her initial diapers as a sign as to whether or not she is tolerating the fiber. We want to avoid re-damaging her intestines by giving her something too rough for her insides. This is a fact for ALL foods that are not animal based. We can't give her too much or it could be a problem. Her initial exposure to acorn squash showed good poops which means her colitis is healing.

In addition to watching her diaper, we watch the rest of her. After two days the acorn squash began resulting in some wet burps which she said hurt. Regardless of what your doctor has told you, GERD is not normal (even if you are younger than one year of age). Reflux is like...mild, unsuccessful vomit. And since Ellie does not have a hernia, those wet burps meant her body was noticing the new food and the first sign things were not going as well as hoped.

We pulled the acorn squash and rotated back in zucchini to give her body a break... but not in time. The next thing to erupt was her eczema. Her usual spots quickly became cracked skin and blisters, and her personality changed to irritable and high anxiety. This means that her body is still not handling the sugars in food and the sugar is feeding a bacteria overgrowth. This in addition to a night of vomiting beef broth fat and a light colored poo showed that her body was tapped out - not enough enzymes to digest the new food or the high level of beef fat, and possible over load from all the factors.

The result: We have pulled acorn squash.

I did my tantrum crying pity party dance. And now we move on to something else. The hope I hang on to is this: she can't eat it now, but she WILL eat it later. And in the meantime she is fully nourished. But as other FPIES kids begin the healing protocols of GAPS, and I watch them quickly surpass Ellie, I head back to questioning how severe her little immune system damage is and wondering what she needs to get over the hurdle. Is it just more time? The waiting just stinks.

The Lasting Effects of FPIES

Last night we were up with Ellie all night vomiting. Again. Her not sleeping through the night has started to be a real factor in our home, and incidents such as this can throw me into a feeling of despair quite quickly. Besides being just plain tired of doing this for over two years, I am beginning to believe that her vomiting episodes send me into a sort of PTSD.

She went to bed complaining 'owie' and not wanting to lay flat, and it was somewhere around 12 am (I think maybe?) that she started vomiting. The next two hours consisted of thoughts like this:
I'm so tired.
So much vomit.
Is it the acorn squash after all?
Does she have the flu which she has never had?
I'm so behind on life.
I need sleep.
What is the matter with her?
She is going to wake up Moriah.
Is this an FPIES reaction?
Is the beef broth bad?
Jason really needs his sleep.
Is she hurting?
Did she eat something we didn't know?
I really need to get some work done.
Please, God don't let it be the acorn squash.
Why is she STILL throwing up?
I never even had a chance to get ready for bed.
She doesn't have a fever.
on and on....

By 4 a.m. I was just standing and sobbing. Ellie looked at me with her sunken eyes and said 'ok? tchu sad?', and I thought, 'holy cow woman. Get a grip!'

As I spend the day doing laundry I am able to step back and look at things a little better. And I am pretty convinced there is a fear factor that becomes engrained into every FPIES momma who has watched vomit after vomit after vomit without having answers. I can not count the amount of times I heard 'try this' or 'try that' or 'we really dont know'. And 90% of the time she reacted exactly the opposite of what they said. Thank the Lord we had a pediatric GI who said 'yes some are sensitive enough to react to soy lecithin', and an allergist who said 'yes she could be reacting to corn syrup'. Many doctors will argue those realities. When dealing with life, it is so.much.easier....to pass the buck and let Dr. Anyone tell you what to do. It is so much easier to use canned nutrition, or follow a check list, or just go with the flow of what is expected. And wait for the symptoms to go away.

Choosing anything else is hard work, and frankly quite petrifying.

But as a colleague and friend continues to remind me - nothing easy is worth it; its the hard stuff that shows our Maker. And it is no coincidence that it *always always always* happens after an event that causes us to feel blessed and uplifted, such as receiving 91 pounds of donated elk bones, or getting a safe new food for Ellie after months of waiting.

And the vomit? Too much beef fat in her bottles. Unlike people who feed themselves, Ellie is subject to whatever ratio we make regardless of what her body needs at that moment. It has been consistent that whenever we feed her a beef broth with too high of a fat content she stops digesting and we are unaware of the poor ratio until she begins projectile vomiting it all over the house.

I knew that was most likely the culprit. And today we are all recovering. But sometimes...I let fear take over.

Drum Roll Please!

Ellie has a NEW FOOD! Thats right. After MONTHS of waiting for healing, Ellie is eating acorn squash!

Today is day two, and she has not had so much as an eczema flare or a burp!

Ladies and gentlemen, we now have a vegetable to get us through the winter while zucchini is out of season, provide some variety, and give us hope that she is indeed progressing (acorn squash has a sugar content that zucchini does not have!).

I can not even begin to tell you the happy hallelujah dance we are doing in our home tonight!

Off to the E.R. Oh the irony.

Yesterday morning I, hubby, and Ellie woke up with the sniffles. I knew that Moriah had conquered the start of a sniffle virus earlier in the week, so I looked at the goop in Ellie's left ear and in her nose and exclaimed to Jason: "SHE HAS A VIRUS! HOORAY!"

OK ok. Before you get too confused, let me explain. FPIES is an OVER-reactive immune system condition. Ellie's mondo immune system has caused her quite a bit of grief in her 27 months, but the one thing it does do is knock out any virus or bacteria coming her way with a vengeance. She was 18 months old before she had anything that looked like a virus and it ended up being an ear infection caused from reflux. This is actually pretty darn common with other FPIES kids, and keeps doctors baffled if they are smart enough to recognize the body regulating internal inflammation versus the common cold. So the result of her waking with snot? Celebration! Her immune system was perhaps regulating DOWN and doing what would happen in a normal body.

A couple of hours later I had Ellie laying on the floor to change her diaper when she pointed at her nose and said 'pick'. She had been doing this for at least three days, and I just assumed it was some new toddler fascination. Except this time I saw what looked like a giant red blood bubble in her nose. I panicked internally, tried to stay calm, and took a closer look. Wait....what...the....it looks plastic??

Oh yes. All that nose picking? Due to one lodged red pony bead in left nostril.

So much for the snot and celebration. How long had that been in there? Long enough to cause ear drainage. Oh.my.gosh.

We pinned her down and I tried to get it out, but the snot and the swollen nose and the worry by mommy to do additional harm kept me from getting it out. Sweet. Just how I wanted to spend my Black Friday funds - paying for an emergency room visit. And I also quickly realized that for the first time in my life I viewed the ER as a scarey place that could potential cause more harm than good. What would she be exposed to? What corn could she come into contact with? What if I don't catch it all? I took a deep breath and off we went.

Luckily they did not make us wait long; it appeared we were bumped to the front of the line. After I answered (three times) if she was current on her shots, why not and when were we going to be making an appointment for those, I decided I would begin to carry cards from the Vaccine Information Coalition in my purse for occasions such as these. And then I had to answer 'are there any medical conditions we need to be aware of'. My concern for avoiding corn based adhesives, etc. out weighed my desire to educate this ER staff so I gave a canned explanation and pointed to her medical alert bracelet (thank you Allerbling!)

Short story only getting longer, it was about a 15 second procedure using a crazy instrument someone designed for creative toddlers just like mine. The only problem was the 'water based lubricant' used to insert the instrument, which oddly caused Ellie to burp the remainder of the day. And out we went. No, I didnt save the bead. Though I should have since it was one darn expensive one.

Mint Tea and Blisters

This post title may imply the two are connected, but they are not. We have had two developments this week that I find rather significant.

The first is the introduction of organic peppermint tea. We have let Ellie sip mint tea in the past but she has never actually 'drank' it. Mint tea is part of the GAPS introduction diet, because it is good for the belly. Two days ago we gave Ellie her mint tea in a children's Starbucks travel cup, and she was thrilled. She drank so much tea that she skipped some bottles of her homemade formula (and yes we let her). She carried the cup around saying 'nummy!' and 'ood!', while rubbing her belly. The next day we gave her another cup. And we had day two of no poop.

This worried me because Ellie goes back and forth between constipation and diarrhea when she is not tolerating a food. We have worked hard to get her 'regular' and make sure she goes at the very minimum every other day, or else give her an enema on day two. It is extremely important (for everyone) to not let those toxins sit in the intestines and block digestion. Hoping to not resort to an enema I decided I would use what I now believe to be the magic pooping supplement (once tolerated). I DOUBLED her fermented cabbage juice and held my breath. This could be bad. Or good. The result? Shortly after that was the prettiest poo we have seen in some time! Mint tea? PASS! This desperate mommy is counting it as a new food, thank you very much!

Second on this week's development was a sporadic outbreak of blistery burn patches on Ellie's high back, with a few on her arms and chest area. They started as scratchy looking burns, and then quickly developed into yellow blisters surrounded by a yellow tinted red ring. This was shortly after I discovered a confrontational comment on a previous post suggesting her skin reactions to corn were actually impetigo. My first thought about these blisters - VOODOO? hehe. OK, not really.

The blisters actually looked a lot like the result of her corn patch testing done by the allergist, so it could be a corn exposure. There was also a yellow infection type tint, so maybe it was impetigo. I mean we do have a lot of chicken poop around at the moment. Better yet, I considered chicken pox, but the blisters were not forming in the right areas (darn. would like to get that out of the way). I went through all the normal questions - new laundry soap? bath soap? .....I racked my brain for clues. And I finally decided it must be a corn exposure, until another FPIES mom said 'oh I get those with lemons and limes'.

WHAT?! ooooh. crap. It's now mandarin season. And mandarins are LOVED in my house. AND as Ellie's healing has progressed, we have gotten lazier with hand washing and skin exposure. And daddy picked up some mandarins last Sunday at the market. For some reason citrus has always been on my be-majorly-careful list. That is not founded in anything other than knowing how much my hands smell like oranges after eating one, and knowing that the oils are really hard to scrub off.

Two nights of soap on the blisters while in the bath, and eliminating the mandarins = Presto. They are healing. It does appear that they will be leaving some small scars, like the corn has done in the past, which really BITES, but with time they should fade. It was a good lesson in not getting too comfortable. Darn citrus.

Dallas, GAPS kids, and Community

November 10 I temporarily left my FPIES broth making duties at home, and headed to Dallas for the WAPF conference. I was thrilled at the idea of learning anything that I could bring back and share with other FPIES-GAPS mamas. I was especially anxious to get into a session with Dr. Natasha Campbell-McBride, and gather more information as it directly related to severe food allergy.

During Dr. Natasha's third session, she concluded with a Q & A portion. I sat and listened, and another mama came to the microphone. As she began I made a realization: there is an entire community of families out there walking the same path with a different diagnosis.

This mama was amazing. She shared a quick version of her daughter's story, and how she suffered from a rare epileptic condition that included a bleak prognosis. This mama had gone incredibly far outside of the box, and started her daughter on GAPS. The result - she was defying ALL odds, and getting BETTER. As this mom shared and then asked her question, she began to waver with emotion, fighting the urge to cry. Her daughter was seizing in the morning before waking up, perhaps due to hypoglycemia. As this mom choked out 'and I just keep thinking I am missing something...' I found myself tearing up as well. THIS mama wore the same shoes. She walked the same walk. She knew what it was like to make that brave leap and walk away from the comfort of the social norm. She asked the same questions.

And as Dr. Natasha answered her, I realized how the same questions and the same answers applied to FPIES.

If I saw her again, I would give her my card with information on GAPSkids, even though it did not visibly appear as a support system for her...yet. Dear Jesus. This mama must know she is not alone. And what amazing experience she could offer!

GAPS kids was originally designed for families of severe food allergies and feeding difficulties who are on the journey to healing with real food and GAPS. What I realized in Dallas is that this journey... of healing a child...outside of the box, regardless of the diagnosis,...is a petrifying and alone place to be.

If you are a parent navigating GAPS healing protocols and in need of a community, especially in the face of a severe or rare diagnosis, please consider joining us. GAPSkids forum

If you would like to hear more about Kennedy and her amazing path toward healing, and her very brave parents, watch here:

And So It Begins

'RAISIN!'
No, how about a meatball?
'RAISIN!'
No, I am sorry. How about a meatball?
'RAAAAAAAA-ZZZZIIIIIN!' followed by heartbroken tears.

And so it has begun. I have allowed Ellie to nibble on a few raisins over the last few days. She sucks on them, chews a tiny bit and spits the rest out. She has probably had four in the course of 48 hours, and that little bit of sugar has set her eczema to scratch status once more.

*SIGH*

How do I get her to actually eat the foods that are safe, and stop begging for the ones that are not?? She sits in the highchair at dinner and moves around the foods we eat, and violently protests anyone feeding her. It's so tempting to force feed her. Though I am not sure what that would accomplish. Just telling her no and listening to her beg is crushing.

This week is 'Thanksgiving Vacation'. I am using it to rearrange the family schedule once more, in an attempt to get time in to feed her all three meals. The amount of time it takes to get her at the table, sit with her so she doesn't beg to get down, and try to coerce her into eating, is amazing. Combine that with cooking real food, and all the other regular mommy and professional educator duties, and I am not sure where sleep will ever fit in. Holy moly.

On to poll other FPIES-GAPS mamas on how they are making their schedules work. Here's hoping for help!

Oops Out of Order

I accidentally posted out of order, and can't move it due to comments. OOPS! If you would like to see my latest post please look here:

The Physiologist

Step by Step

'almon patti mama' (salmon patty mama!)
These are some of the things I am beginning to hear from Ellie.
'ookie'  You want some cookie? 'YEAH!'

While she is still not allowed to eat these things, we are sadly capitalizing on one factor: she can't chew.  She is asking to have what we have (such as big sisters salmon patty at lunch), and she is spending time in that highchair. Most of it is licks or moving food around, but that is progress. Food aversion has been the name of the game. Sensory issues and lack of muscle control for chewing is the consequence. We learned from her feeding therapist that there are triangle muscles on the side of the face she has never used, and will now have to do actual exercises to strengthen. Lovely. My toddler the face-muscle builder. But that is ok. All of these hurdles are part of being a parent, and if we can get her to ask for food then we are making progress.

It's the telling her no that breaks my heart.  And on occasion she has managed a whopping chunk off of a muffin or cookie which has required intervention and the devastating taking away of the food she clings to. I can't help but guess each time sets us back a little bit.

BUT we have worked so incredibly hard to get the dangerous foods out of the home - no corn, soy, grains, dairy (for the most part)- that I can always know what she is holding will not do major damage.  Her sensitivities have also improved so that she can hold things such as foods, crayons, etc, and not have a reaction.  So for now we are focusing on exposure, and getting her back into the idea of eating without it coming from a bottle.  Step by step, we are moving forward!

Headed Home

As I sat in the final session of the 2011 WAPF conference yesterday late afternoon, I began to cry. I didnt want to.  But it was one of those in-your-throat-and-it-hurts-trying-so-hard-not-to sort of cries.  Perhaps it was the other moms that were crying. Or perhaps it was the cumulation of a very long three days stretching my brain and my heart with new information.  Whatever it was, I felt it in my heart more than my head.

I attended the session on vaccination information because I felt uneducated on the topic.  The session began, and all I heard was this:  MSG, antifreeze, formaldehyde, aluminum, glycerin, lead, acetone, streptomycin, mercury, monkey kidney, dog kidney, chick embryo, aborted fetal tissue, pig blood, horse blood, sheep blood, rabbit brain, guinea pig, cow heart, animal viruses....and I began to cry.

This session jolted me towards one reality:  I fully vaccinated my six year old.  I consented to those ingredients being injected into her body, and right that moment the mommy guilt was too much.  But as I listened to April Renee of the Vaccination Information Coalition, I heard her say something that jolted me back to the first email I received from Dr. Natasha - but there are things you can do to cleanse the body; there is hope.  HOPE.

This was the incredible theme I continued to find throughout the entire conference. While delivering earth shattering and worldview altering information, every.single.speaker...offered a hope within their message.  Be it instruction on how to support fair legislature, how to take control of your own health, how to detox your childs body from heavy metals, or how to find a support system, there was always something there to light the tunnel you suddenly found yourself in.  There was not gloom and doom, only education and encouragement. 

I went to the WAPF conference largely intending on learning more to help Ellie; instead I received information that applies to us all.  As I leave Dallas and head home in the morning I am convinced of one thing:  FPIES is no longer about one sick little girl.  FPIES saved my family.

Bye-bye Modesty, Hello Gut Healing

Are you ready to get naked for healing?  It's time to bare those mid-drifts.  What I learned tonight makes those 1960's nudist colonies appear useful.  Ironically this tidbit of information came delivered by Dr. Mercola tonight at the WAPF conference awards banquet, but actually originated with Dr. Natasha Campbell-McBride (who I have now been referring to as the conference Rockstar.  That woman is impossible to catch and talk to). 

Dr. Mercola was sharing what he learned from Dr. N about vitamin D and provided this tidbit:  get the sun on your belly!  Sun rays on the stomach penetrate the skin and into the gut where it kills candida, fungus, and improves digestion.  Are you as incredibly amazed as I am?

Get those GAPS bellies out into the sun and let them soak up some rays of healing. FPIES gone bikini....after Winter!

Other sun tips from Dr. Mercola:
- daily doses of sun on your toes cures toenail fungus without medication in 3-6 months
- daily doses of sun on your armpits kills odor causing bacteria, meaning no soap, no deodorant, no smell.

Real Food in Dallas

Leaving all of the broth making duties to daddy, I have headed to Dallas for the annual Weston A Price Foundation conference.  Quick summary:  today was day one, and what an amazing day!  I am volunteering at Sally Fallon's New Trends Publishing booth which has been amazingly fun.  When not busy I can take turns with the WAPF staff member in charge of the booth and attend sessions.

Dr. Natasha taught three sessions today - a full day of GAPS.  I was not able to attend until the last session, which was fine, until I had someone sitting by me at dinner exclaimed 'what was that you said your daughter has? yeah....you weren't in the second session? Dr. Natasha had that on her overhead and said has anyone heard of this?  No one raised their hand, and she said that was because it was extremely rare.'  Of course this neighborly woman could have been mistaken, but I would love to get a minute or two to ask Dr. Natasha tomorrow.  Darn it! I would have been waving my arm and jumping up and down! 

I DID get a chance to meet Dr. NCM briefly as her protective husband was requesting she stop answering questions and attempting to drag her away.  She was exhausted and had been up 24 hours straight, and he was being a chivalrous hubby. Seeing her in person only solidified what I had already pieced together about the woman who responded personally to emails from desperate mothers half way across the globe; she is passionate about what she does and the kids involved.  She looked every person in the eye and listened with intent to their questions and stories, often responding to their 'thank you' with 'no, it is completely my pleasure'.  She appeared to cry with everyone, and the offered amazing suggestions for healing and hope.  Truly a brilliant woman.  I was able to shake her hand and choke out a thank you, handing her a card I had brought with me.  And I got a picture with her as well, which I fully intend on putting in Ellie's baby book.  (WAPF conference observation = no one knows how to work an iphone camera)

Here are some highlights from the third session I was able to attend:

- supplements should be a minimum; diet is the treatment
- iodine deficiency is common
- conditions such as reflux do not necessarily need a digestive enzyme supplement. often fermented cabbage can be enough.
- GAPS detoxes the body naturally, and for many there is no need for chelation or detox programs.  Following the program detoxes.
- All immune system diseases have the same root, just different antigens attacking different things. (ie. food intolerance, rheumatoid arthritis, etc)

and some of my Dr. NCM favorites:
-"We are all different; there is no one size fits all...no doctor or scientist in the world can prescribe a rigid menu for you. You must know your body." 
-regarding severe food allergies and intolerances the "digestive system is like a seive". 
-"I havent seen a patient that needs grains."
-"I learn the best from my patients.  Its my patients who teach me."

So much more, but so time for bed!  

The Physiologist

Ellie has had problems with low muscle tone and delayed milestones her entire life. When she started GAPS we discovered much of it was due to malnourishment and saw great improvement. Coming off the elemental formula she said oodles of new words just within 24 hours. Lower body muscle tone and walking has been a different issue.

Ellie had trouble getting on her feet and even sitting upright in a traditional infant manner. Ever notice how infants seem to have a rod stuck in their spine? Ellie was always slunched over. An experienced pediatric physical therapist friend took a look and told me it was due to low muscle tone. We made adjustments, tried to help Ellie work on those muscles in different ways, but her feet and legs continued to get worse.

Her right leg turned inwards dramatically, and her left only a little. She began to walk on the side and toes of her right foot. She fell often, hopped instead of ran, and her center of gravity was off. When she began to grab her leg and say 'owie' it caught my attention. I took her to the pediatrician who watched her walk and then said the equivalent of 'naw- lots of kids are pigeon toed and it straightens out'. So off we went with me wondering that fine balance between something-is-wrong and mommy-making-something-out-of-nothing. I decided to watch it, pray, and investigate who should look at her to be sure. Podiatrist? Chiropractor? Physical therapist?

About three weeks ago I began to notice that climbing onto the couch she looked as if she had cerebral palsy. Her toes were curled under and her foot had become a small ball. And she climbed by scooting, throwing her butt up onto the couch with her left leg, sticking her right leg straight out, and then pivoting on her hip. What was up with her right leg? I was getting worried. To make matters worse she began saying 'owie' a lot, and crying. She would grab her feet or her knees and come looking for comfort. This child has been in pain since birth and never complains. Her pain threshold is extremely high, and when she began to complain it told me I had put it off long enough.

Enter strange (divine) connection. I am a teacher with a public charter school here in CA, and have the privilege of working with many homeschooling families who allow me to also become their friend. One family lives about 10 minutes away, and has a child who is seen weekly in their home by a Physiologist. I have seen the amazing help he has given her, but been reluctant to cross the professional barrier and say yes to her offers of bringing Ellie for an appointment in their home. If I said yes, I would not have to travel to see him and navigate his busy office. But what IS a Physiologist, and do we have the money, and and and and.....

Three weeks ago I took Ellie for her first appointment. The doctor took her history and watched her play, all in the comfort of a home rather than an office. He then began her initial treatment on a massage table, which required her to lay still and comply. I figured - yeah right, this squirrely two year old? He began with her hips, explaining and allowing me to feel the changes as he went. The reason she walked that way? Her femur was out, for starters. Her hips were an inch different in height, and therefore her legs almost an inch different in length. As he did soft manipulation of her joints and bones which was similar to that of a gentle chiropractor, Ellie fell asleep on the table. What in the WORLD?

What are you DOING to her? I asked in slight mommy panic. His reply: She is without pain for the first time in an undetermined amount of time. The amount of pressure I am putting on her legs is equal to about 30 pounds, and she is still relaxed and comfortable. (I cried. - I seem to do that a lot lately.)

He then worked on her knees, saying that both were out, and looked at her feet. I could hardly believe my eyes - she let him work on her little body for 45 minutes without complaint. When he said lets take a look at her now and put her on the floor, I was eager to see the results. For the first time in her life, she walked away on flat feet. She ran, she jumped, and her body difference was amazing. I could hardly believe what I saw.

This older, grandpa-like doctor seemed equally moved by the change, and said: Kids like this are used to being in pain. They don't know what it is like to NOT. See the change? Film it, take pictures, and watch. You will know as the mama. The proof will be there.

Did we need to be careful? He laughed. Good luck holding her down. The body will heal and the ligaments will hold the bones in, it is just a matter of how long because each body is different. (what? more hope for healing and proof the body has the ability??)

Do we bring her back? Yes. He would like to see her next week to finish the upper part of her spine, because realignment of the bottom put strain on the top. And then that would most likely be all she needs unless we notice her having problems again.

With great thankfulness I brought her home, baffled at the change in just that one treatment. And I had resisted so long!

The next night Ellie had rough sleep. She woke a lot and cried like she had not in a long time, and I was worried. It was her body adjusting, and after that she slept more soundly and we saw more change for the better.

The best part? The day after her first treatment she had the easiest, and LARGEST poo I think she has ever had, without a hitch. And this is what we continue to see, her emptying herself easier. It even helped her intestines! Makes sense. Sort of. :)

Three Steps Forward, One Step....

Some time ago Ellie stopped even wanting to be at the table with us at mealtime. If she couldn't sit on my lap and feed me, she wasn't interested and it became a battle. Earlier this week during dinnertime frustration, I shouted at Daddy to go get the wooden highchair from the garage - the unused wooden highchair that I spent HOURS shopping for before we knew we had a kid who would never use it.

At one point I purchased a Stokke chair off of craigslist in order to get her at the table with the rest of us. This worked. For awhile. She uses it to color and participate...unless it involves food.

In came the wooden highchair, and she was more than obliged to take a seat. In fact, she has started wanting to sit there for breakfast as well. She has yet to actually eat anything, but spends the entire time chatting and playing with whatever is on her tray (usually stabbing it with a fork and moving it into the cupholder), but it is progress.

I'm very grateful I had never gotten around to listing the highchair on craigslist. NOW it might get some use!

For the Love of Liver

We were on a liver shortage for a few months. I stopped giving it to her because I couldn't find it at all of my usual sources. I could have probably found it if I had extended my search out, but honestly it never occurred to me. I didn't have the time, and I didn't realize it's importance until it because obvious.

What is the importance of liver, you ask? Liver provides Ellie with vitamin C, vitamin B, iron, zinc, folate, and an entire list of brain-development-needed nutrients. Yea. For several weeks I just blew this off.

Until she started saying 'owie' and shoving her finger in her mouth. What did I find? A mouth full of sores! She has never had canker sores of this kind in her mouth. And I didnt have to re-do the research I have done in the past to know that those are often triggered from a lack of vitamin B and vitamin C. C-R-A-P. Another mommy fail.

I made our need for liver known and was blessed a thousand times over. We now have a freezer full of beef and deer liver and hearts! We added the liver back in and I waited to test my theory. It took two days for her to stop poking at her mouth, and by the third day I could see no more sores. She is sleeping better, too. Thank goodness for liver!

Gettin A Move On

It has been 8 months on GAPS intro stage 1. Ellie has lived on meat, broth, and zucchini for 8 months. She has grown, thrived, and never been healthier. Any person can live on a diet like this forever. But there is no way I want her stuck there. There have been so many times I have thought there must be something else. GAPS got her started, but what is the hang up? Back to my knees, and the science, and my support system, and we keep plugging forward. I keep hearing of other GAPS patients who take 2 full years before really seeing large jumps in healing and progress. Ellie is on the extreme side of that, so 2 years may even be an unrealistic goal. I tell myself that 2 years for a lifetime of eating is a drop in the bucket. But that is not an easy goal to hang on to.

And then this week something changed. By the grace of God I got another glimpse into her system when she ate some wretched dried green peas. Those peas tore her up and I prayed every night that it would not set us back months. And it didn't. Which was amazing in itself. Once she was symptom free we decided it was time to retry chicken broth. Two days before her eczema on her legs erupted into a nasty painful mess that looks more like hives. We recently stopped her nystatin because she reached the six month mark, but I have no idea if this is the cause. Should we wait?

GAPS progress is largely individual and based on the healing that has taken place. It is completely possible that the small amount of fiber Ellie is getting in her zucchini is keeping her from healing, and we may have to pull it. When I got that word from Dr. Natasha, I cried. 8 months of broth and healing and that? And then the pea incident.

Back on my knees I went. Pull the zucchini? Move forward? Once the basis of healing has begun in a GAPS patient, foods should be tolerated easier and at a 'quicker' pace. Other FPIES kids have moved much faster than Ellie. This time I feel it is different. I may be right, I may be wrong, but there are some changes that show me it is time to push forward.

Three days ago we started our third attempt at chicken broth, armed with lots of fat from the feet and added lamb tallow. These chickens have been fed grain, and guess what? SHE DID GREAT! This pass makes me want to do a dance with excitement. I am feeling the green light. It feels scarey and exciting, but I am hopeful at another milestone of feeding Ellie.

So what is next? We begin with one drop of fresh carrot juice a day. Carrot juice has anti-fungal properties and will help with candida which she battles. Carrot, butternut, and pumpkin are on the list. Maybe even onion. And I am thinking it is time for a trip back to the feeding specialist to find help getting her off the bottle and onto whatever is next.

Here we go Ellie! Here we go FINALLY gettin' a move on!

On Her Feet

It has taken over a week for Ellie to get moving after the green pea incident. Ironically, she seemed to struggle getting over the hump until we gave her bear meat and broth, and she was leaps and bounds better within 24 hours. I have no idea what the difference is with bear meat, but we will take it! For those in the FPIES poo world, she is still having diarrhea, but not reactive. This is weird since she has a history of constipation so I am worried it means remaining damage or ....? yeah. The FPIES who-knows-what. Then again, I would rather her have diarrhea that does not move too fast and allows her to digest, than constipation that sits and poisons her system.

So what next? She is trying the pork we pulled during the reaction right now. We are madly stuffing our new freezer with zucchini for winter (we were tremendously blessed with an additional freezer for this purpose). Then we try chicken broth once more, along with a new vegetable. What vegetable has yet to be determined.

In other topics, Ellie has feet that are slightly turned in. Not really a big deal, but she has complained of pain in her legs and feet for at least 8 months now. A consult with the pediatrician said it was nothing to worry about, but for a toddler who is used to being in pain and has an extremely high pain threshold, saying owie repeatedly over the same thing is a red flag. I plan to take her to be evaluated for......something.

She is also now 26 months and needing to hit some milestones. We are faced with losing the pacifier, moving her to a big girl bed, and potty training, none of which we have even considered yet.

What is more immediate is the need to get her off the bottle. She currently eats using an Avent bottle with a nipple we slice so that her puree will go through. Those nipples do not last long before they tear and are costing us a small fortune. She will drink water from a cup or straw, but doesn't take a spoon or eat in any other manner. How do we help her transition past this point? I'm not sure.

Announcing GAPS Kids

Its been too hard keeping up with email and moms around the continent who are wondering what GAPS is and where to start. It took me some time, but I think a solution may finally be there.

I am excited to announce the launch of GAPSkids, a GAPS forum designed to support the families of children with severe food allergies and feeding difficulties. It is my sincere hope that GAPSkids will be a place of hope, sharing, and encouragement. GAPSkids was created with permission from Dr. Natasha Campbell-McBride.


*Update: community members have expressed their desire to connect for more than just information sharing and so we have moved the forum to facebook.  Join us! :)  GAPSandKids.com
 

Who Would Have Thought

This afternoon I received an email from the Weston A Price Foundation conference scholarship office saying that a rare opportunity had come up. If I worked as a volunteer at one of the booths, I could go to the conference with meals included, and also receive a full set of conference recordings! Seriously?! Who would have thought!

The volunteer job would require me to work the majority of the conference and arrange to see a few sessions when not busy. There would be no guarantees of which sessions I could attend or how many, but I would be done in time for all evening activities and free to attend the poultry course I really want to attend on Monday after the conference ends. I also figure that since one of the conference days Dr. Natasha is speaking all day long, surely I will be able to sit in on at least ONE!

This is an amazing opportunity to go get my feet wet in a lot of areas. I am confident that since God plopped this in my lap I will be able to attend the sessions that I most need. And a friend has a friend that I will hopefully be able to bunk with to avoid hotel fees. Hooray!

At this point that leaves only three hurdles: airfare, transportation expense, and the fee to attend the poultry workshop. I'm half way there!

A Hawk and the Chicken Feed

Last Wednesday evening Ellie started throwing up and spent the whole night emptying her stomach. I had no idea what was going on. We were on day three of trialling a new squash (white pattypan squash), we were giving her pork with quite a bit of fat content, and she was exposed to the flu the day before. All three muddied the water in figuring out what it was. The squash was pulled, the pork was frozen, and she was switched to beef broth and beef puree. Thursday she seemed better but fussy. There was no vomit. And then Friday she started pooping.

It has been a LONG time since we have seen such a classic FPIES response out of Ellie. This would have been completely typical for her a year ago. I prayed it was not the squash, knowing that either the pork or the squash as a fail would be a major disappointment. She had self-limited her pork intake before, so perhaps this was a build response.

Sometime late Friday morning after I had already changed a couple diapers, I realized that the free-grazing chickens had gotten very quiet. I looked out the kitchen windows and could not see ANY of them anywhere. Finally Moriah (my five year old) spotted them all underneath the coop. What in the world? What were they doing and why were they so quiet? At that point I looked up, and perched on the fence right next to the coop was a large red-tailed hawk. Probably because I had been looking down on the ground I had not noticed.

In a panic I ran out the door to protect our precious grain-free chickens, only to hear Moriah yell "Mommy Ellie pooped again!". Any FPIES mom knows that time is precious in getting that acidic, skin burning funk off of their little bums. UGH! But there were not two of me. Out I ran...right.up.to.the.hawk. Literally. That giant bird was at least two feet high, and I stood jumping up and down and shouting about 5 feet from it. That was as close as I felt comfortable getting, because it did.not.budge. Suddenly I felt a bit intimidated, and backed up looking for something to throw. I grabbed the Frisbee off the lawn and chucked it, and it slowly flapped off.

Now to get the chickens IN the coop. I climbed through the coop because our fantastic chicken run has no door (design flaw I am afraid) and managed to get them all out from under the coop and inside of it. Then I had to figure out how to get into the coop with them, and out the other door without them escaping. All of this with a crying Ellie in the house, of course.

Back into the house I trudged to tend to the burning skin. This time I pulled off her diaper and ....was stopped short. It was full of little, tiny, round, green, .... peas??? What in the world? Where??? I cleaned her up, and continued my inspection. Those most certainly looked like peas. Oh.my.GOSH. About 3 (maybe more) days prior I had spilled some dried split green peas onto the top of an ice chest sitting on the floor in the kitchen while mixing the chicken feed! I had never cleaned it up. I looked over at the ice chest and the little round cup holder on top and sure enough, there were only a few left.

She SNUCK food?? She wont EAT food, or let a spoon get near her face! And now she is sneaking it? I watch her like a hawk!- (a phrase to which I now have personal understanding of). I waited until my mom arrived and showed her the diaper - what do those look like? I need a confirmation? yup. I thought peas too. UGH!

Dried peas would rip through anyone's intestines, and I can not even imagine what damage it did to Ellie's. My heart broke on SO many levels. Sneaking food? Wanting it? Knowing we would say no? How much damage? How many weeks of healing do we need now? How far back has this set her? All because I didn't think to clean it up? Why did I never see her take them? oooooh the questions. But at least I had an answer. It wasn't the pork. It wasn't the squash. It wasn't the flu. It was peas. And I won't be feeding them to the chickens either.

Here we are one week later and she is still having damaged intestine poo. It hurts, and she cries. And we wait. Some day we might get around to actually trying chicken again.

When FPIES Starts Talking

I made a realization today. When Ellie was an infant I used to wish, night after night, that she could just tell me what was wrong. Do you hurt? Where? Why are you crying? What can I do?

I would have paid millions for any magic ball that would help her say what she does now:
"I tired", "I hungry", "Coming!", "Oh-tay mama".

Ellie began speaking shortly after starting GAPS, and has progressed rather rapidly to complete sentences. In fact she said six new words within 24 hours of taking her off of her formula (Nutramigen AA). Now, she is quite the talker and does a good job competing with her five year old sister.

Today while reflecting through FPIES goggles I realized this:

The most horrible words to hear: "I hurt, mama."

The most wonderful words to hear: "I full."

Flash Back to Vomit

The same night I finished the post about my pity party Ellie began throwing up. She threw up all night, and is now on day two of not eating. It could be one of three things:
- We were exposed to the flu the day before. No one else is sick and that would make for one truly short incubation period.
- It was the pork she was eating. We made a giant pot of pork broth that was extremely fatty. Fat is what helps aid in digestion but there was one time before where Ellie had a throw-up-capade and it included too much beef fat. Pork also happens to be the only meat Ellie usually self-limits, which has always been a bit odd to me. So the possibility that there was too much fat, or too much pork, or a build reaction, or who-knows-what is there.
- We were giving her a new squash. She was on day three of trying a flat, round, scalloped summer squash called pattypan. It was white, skinned, and boiled like the zucchini. I figured of all squash for her to pass this one had a good chance. But perhaps not. She had already started to have a diaper rash and some other problems. I attributed it to adjustment to a new food.

She has not thrown up since yesterday morning, or after we switched her back to beef broth, beef meat, and zucchini. She is still not eating and I am watching for dehydration.

We have not had a vomit-ous episode to this extreme like this since prior to GAPS. All adjustments and trials of new foods have been lower GI and poo related. I had forgotten the pleasure of screaming baby and all of the laundry that results from so much throwing up. We were getting ready to do a second run of chicken broth, and now we have pattypan squash and pork to re-test. I am beginning to wonder if we will ever get to chicken!

Shortage. And My Pity Party.

The local Henry's became Sprouts and no longer carries Ellie's liver.

The local Trader Joe's is out of her safe lamb.

The farmer who provides her safe pork was not at the market this last Sunday.

The farmer who provides her safe beef has been unable to get liver and is out of marrow bones.

I was told at the farmer's market last Sunday that zucchini is done. Her one safe vegetable is now out of season and goes from $1.50 per pound to $3.99 per pound.

Our chickens are still two months away from laying.

Access to wild game is dependent on friends.

We are in a shortage. And if feels like a famine.

.......hello. This is Ellie's mama.

Normally I write about Ellie. But today, I write about me.

This was not my dream. This was not my plan. This was not my normal.

There has not been a single.time.in.my.life....where I woke up and said RIGHT ON! I get to spend all day searching for soy and corn free meat to feed my baby in one of the riches countries in the world... that same country full of doctors that laugh at the medical research which shows why my child can find healing through GAPS....where it is so much easier to give a can of powdered nutrition than to actual find real food that is safe. Nope. I most certainly did not wake up this morning celebrating that.

I most certainly do NOT celebrate living in little suburbia with the large lot that holds a play structure, and a sand box, and a BBQ patio, and room for grass and a raised garden bed, only to realize too late that it can't sustain a cow or a pig or a goat to feed my baby.

The 'burbs. Neighbors and block parties, reliable internet and pizza delivery, picket fence and running to the grocery store.

Not my normal.

My normal includes explaining why the whole family eats corn and soy free, or why we use homemade laundry soap. My normal exists somewhere between looking like the crazy crunchy Christian woman and trying to make others understand I am not judging their choices. My normal is when I get the crazy look from the 16 year old working at Trader Joe's because he saw the panic cross my face in response to 'We are out until tomorrow'. It is listening to the 'No really our new product will be better' explanation when the meat department tells me they are out of liver until further notice and I clearly want to kick him. And who exactly understands what it entirely means if I drop the ball and can't get a safe dinner on the table, resorting to take-out? That list of consequences would be an entire post in itself.

My joke about starting a commune has turned into 'how can I get some property for a few animals', and the reality of that has finally sunk in, sending me into a massive, depressive, pity party.

For some reason, perhaps because we have hit a rut with her three foods - meat, broth, zucchini - I have hit a bump myself. Perhaps because when there is a lull in the battle there is time to reflect. No. There is time for distraction.

Last week the hubby and I were blessed by some relatively new friends. Our bible study group who barely knows us since we are never able to attend (that new normal again) gifted us tickets to a Casting Crowns/Sanctus Real/The Afters concert. I went fully prepared to have my world rocked, and wondering what exactly God would show me. I had no idea that the opener for all there would be the most impacting. Lindsay McCaul is a new artist with a most amazing song titled Take My Hand. It is reflection on my favorite story in the Bible- the story of Peter - so passionate, so brave, so ready to take on anything. How He was riding in this little boat in the middle of an amazing storm, unable to see the other side to safety, when He sees Jesus coming towards Him in the darkness on TOP of the water. He calls out and says "If it is really you, call me out to walk with you!" to which Jesus responds with "Come on! Let's go!" Peter steps out, and takes only a few steps. Distracted by the storm around him he loses his focus on the One keeping him afloat. As he begins to sink He panics, calling for Jesus to save him. And without hesitation Jesus catches his hand and replies with "You of little faith. Why did you doubt?"

Exactly. My pity party is entrenched in fear. Can you relate?

(Lindsay is so new that there are no decent videos of this song on You Tube, so watch the one below keeping that in mind. And just in case you miss the amazing power to the lyrics, I posted those t00)

Take My Hand -Lindsay McCaul & Jason Ingram

I heard You say it, I know You did

You called me out into the waves and wind

And for a moment I was brave and strong

But now everything is going wrong

Didn’t You know that I’d be scared

Couldn’t You see I was unprepared

I’m not asking for reasons You hold or the safety of land

I just need You to take my hand

I could have stayed back where I was before

And never met You in this raging storm

You’re telling me that faith is all I need

But fear is all that I can find in me

Didn’t You know that I’d be scared

Couldn’t You see I was unprepared

I’m not asking for reasons You hold or the safety of land

I just need You to take my hand

Cuz I would be ok if You’d take my hand

I wouldn’t be afraid if You’d take my hand

All would fade away if You’d take my hand

If You’d take my hand….

More Chicken. More veggies.

After much prayer, thinking, discussing, polling other mamas, etc. I have decided that the largest problem with the chicken broth was a lack of fat. I re-read the GAPS chapter on constipation, and decided to increase Ellie's probiotic dosage as well as her daily amount of fermented cabbage juice. She had one day of noticeable adjustment and die off and that was it. This pleased me greatly!

This week I plan to make a new batch of chicken broth and we are going to go for round two. This time I will also add in some additional beef or pig lard to help with digestion and keeping things moving through. In fact, since the chickens we have are smaller and leaner, I may make half beef and half chicken blends just to be sure.

The other topic of discussion is what vegetable to try next. As the summer comes to a close, the zucchini prices start to sky rocket and our freezer is full. We have not been able to find an additional used freezer that we can afford, so the pressure is on to find something to replace the zucchini.

This makes me incredibly nervous considering she has not tolerated cauliflower, garlic, onion, carrot or yellow squash (while on GAPS). I have been considering a couple of reasons this may be. One thought is that I am giving her body large amounts of one vegetable instead of rotating through more than one. If it is important to rotate meats through for optimal healing, perhaps that is the same for vegetables. The other thought is that due to her non-existent digestive enzymes she is not getting 'over the hump' for healing and not tolerating any other vegetable. I am considering starting her on an HCl supplement to see if that helps.

I will be doing more re-reading and researching on enzymes and HCl this week, as well as spending more time on my knees asking for direction. We have gotten too comfortable around here with our zucchini. Time for something new!

My Dream of Being a GAPS Groupie

Its been awhile since I posted about our current needs with Ellie. We are financially stretched to put it mildly, but God continues to provide as we go along. I figured it may be time for me to throw out another post about what our current situation looks like.

On a weekly basis Ellie eats/uses approximately:

1. 10 pounds of grass fed bones
2. 7 pounds of grass fed organic meat
3. 7 pounds of zucchini

This is a conservative estimate, and cost varies depending on the type of meat we buy. While beef can cost us between $5 and $9 per pound, lamb usually begins at $9 per pound and goes to about $12 per pound. Total we spend between $100 and $150 per week on Ellie's food.


In addition to Ellie's food needs, I discovered an opportunity after the application deadline for scholarships. Dr. Natasha (GAPS) is an active member of the Weston A Price Foundation, and will be speaking at their annual conference in November in Dallas, TX. In addition to being an auditory learner, and having had a severely steep learning curves in the last six months, this conference looks like a incredible one-stop-shop for getting me over the hump and into the land of the science of real food. We have been 'stuck' with Ellie for awhile, and the pressure is on me to figure out what food next or how to trudge my way through GAPS. This conference would meet several needs in our home and for Ellie: I would be given the opportunity to listen to hours of Dr Natasha providing education on GAPS protocols, there would be multiple classes on cooking real food and those hard to figure out items such as ferments and making ghee, and there is a full day presentation on poultry farming and raising them without commercial feed!

For obvious reasons this expense is hard to cover. The conference is $440, the chicken workshop is $85, airfare would be about $250, and then there is the cost of the hotel.

Can you join me in prayer that I can save for these expenses? Perhaps someone knows of a secret coupon code for airfare, or a house that needs 'sitting' in Dallas? Maybe there are scholarship funds remaining in spite of the deadline being passed? Who knows. Maybe. Maybe not. But it certainly doesn't hurt to ask for more prayer. After all, it was only a few short months ago I had no idea I would be led down the path of GAPS, and now I can't wait to be a groupie!

More Provisions

I was getting ready to start the search once more. Ellie relies heavily on liver and organ meats for some of her vitamins, and one of the most important is vitamin C. Since the only vegetable she eats is boiled and peeled zucchini, and she can only handle a limited amount of fermented cabbage juice, liver and heart are very important pieces of her diet.

A few months ago the local Henry's Market turned into a Sprouts. Henry's carried the only reliable grass fed, organic beef liver that I have been able to find. Sprouts has not had liver on the shelf since the switch.

It is extremely difficult to get liver from the meat vendors at the Farmer's Markets where we purchase our other meats. Our regular meat supplier, Winterport Farm, has been unable to get liver from their processor. The reason it is so difficult for these farmers is because they need a USDA certified organic processor to butcher and bag their product for market. The USDA (government) likes to keep all extra to resell for things like dog food and to make extra money. If the farmer wants back the marrow bones or the tallow or the liver, all very nutritious pieces of the animal, then the farmer must pay extra. The best way for us to get access to these things is to purchase a whole cow and butcher it ourselves, but we have not been able to cover the cost.

Ellie has been without liver for a few weeks now. I was getting ready to start the sourcing again, and call a beef farm that I have not purchased from in quite some time because they charge more than $3 a pound more per cut of meat than our favorite Winterport Farms. I cringed at the thought, because the cost of Ellie's liver was going to go up substantially.

But wait! Today I saw some of the best news ever come across my facebook page! Some friends who have helped to supply Ellie with bear, venison, and elk in the past, are coming home from a hunting trip. The news? The organs hunters normally leave in the field were harvested, bagged, and brought home just for Ellie. Deer liver! Can't get much more grass fed than that! I cried.

And when I expressed my gratitude, I was told by one of the men in the party that 'those hearts and livers were first priority' with each animal. I cried again.

Humbled. Humbled is a word that still can not express how thankful I am. Glory to God for His provisions, and thank you a million times over to those men for being a vessel of love and supply to our family.

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!

I Stand Corrected

I didnt wait long enough. It hit her today. I feel HORRIBLE.

The small amount of lentils and scone have caused the worst poo I have seen in quite some time. She has a huge diaper rash that burns and a tummy ache. She is spending the day feeling icky.

Crap.

The only consolation is that she did not have vomiting or shock symptoms, and that it is clearly her candida out of control again (better than full blown FPIES). From such a small amount?!?!

Once again I am amazed at the sensitivity of the body. Of Ellie's body. As I scratch my own painful eczema because I ate homemade candy with honey last night. It is a marvel at how strong she is. *sigh* Lord bring us healing.

More Proof

Of COURSE, immediately after I resort to anxiety and wondering how Ellie will progress, she spends the evening asking for bites of my lentil soup, and spends today carrying around and nibbling (licking) a blueberry (almond flour) scone!

WAIT. Before you panic, let me tell you the GOOD news.

Yes, I did what every FPIES mom should NOT do - let her just go for it. BUT - We have already moved all food in the house over to full GAPS (grain free, soy free, corn free, starch free), so I had the reassurance of knowing this while she was carrying food around. Also, the 'bites' of soup were so microscopic that the total ingested was probably 1/32 of a teaspoon.

It was only months ago that Ellie could lick a spoon or have a sticker placed on her skin, and we would have anything from a classic to atypical FPIES reaction. Vomiting, diarrhea, shock like symptoms, etc. from such a small amount. It was terrifying.

This time I knew we had almost 6 months of healing on the calendar. This time I knew that her asking for food was pivotal in making progress. I took a risk.

And this time - NO FPIES RESPONSE!

OK so we had some loose stool the next day which said 'mama what were you thinking', and her eczema is flared, but no vomiting, no extreme diarrhea, no shock like symptoms.

THIS is amazing confirmation that she is truly progressing.

Baby steps.

This does not mean we can begin feeding her, or even that lentils are safe. To start feeding her these things would be silly and just cause damage to her still healing gut. But it is hope. Healing. Exciting! Encouraging that she is ready to begin adding in more foods.

Hooray!

More Patience

Stuck. Again. OK not really stuck. The fact is, we are making progress towards healing, but the majority of the time it just.does.not.FEEL like we are making any progress. The last few months have gone something like this:

give her egg
take away egg
give her egg
take away egg
uh oh, is it the beef? nope not the beef.
try egg again.
take away egg.
try egg.
take away egg.

WHAT in the WORLD?! Healing. Healing.....takes.....TIME. No magic pill. No fast fix. Individual bodies, individual systems, and individual little intestinal villi that need to regrow at their own individual pace. *SIGH*

The issue of egg continues to be one that is unclear. Is it what the chickens were fed? Or just egg? For a couple months now we are holding firm in the same place:
bottles with 1 ounce zucchini, 2 ounces meat, and 5 ounces of bone broth
probiotic
fermented cabbage juice
nystatin

She still doesn't chew or swallow. She is learning to take her broth from a straw. Egg has continued to be a puzzle. So what next? We have to keep moving forward. But not too fast, because healing can't be rushed. Do you see my continual balancing act?

We are nearing the 6 months mark of Ellie being on nystatin powder, and will have to wean her off soon. We no longer have a good source of corn and soy free eggs, and no sources that are grain free. We no longer have wild game in the freezer supplying a variety of meat nutrition, and are making a small rotation through beef, pork and lamb.

So we decided to test her healing progress by giving her zucchini with the skin ON. Yup. Up until now we have given her peeled zucchini to remove the extra fiber which might be too tough on her intestines that are focusing hard on healing.

The verdict? Confusing at first. We had too many other factors and it took a little while to work itself out.

BUT IT'S A SUCCESS!
SHE CAN NOW DO ZUCCHINI SKIN!

Small steps. Baby steps. Signs of healing. This is huge. And I just have to keep reminding myself that.

Foundation of Food

I am so incredibly humbled by the support of friends and family regarding our journey with Ellie, as well as the launch of the new FPIES Foundation. One friend has gone above and beyond, and it is truly amazing. This awesome friend helped pass the word and I am humbled, flattered, and completely blessed by it.

Check it out here:
Foundation of Food by Front Porch Fighter

Pics of the Chicks

In the Incubator

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.

Announcing....

It is with great anticipation that I announce the launch of The FPIES Foundation. I am privileged to work with a group of 7 other women who are also FPIES mamas, in the great hopes of raising awareness and helping support families who are walking the path of FPIES. I can not think of a better way to use what we have gone through than to funnel it into providing hope.

Check us out! Spread the word!

www.thefpiesfoundation.org

FPIES Birthday #2

Planning and approaching Ellie's birthday this year was much less dramatic than her first birthday. First birthdays are full of expectations and ideas, and with FPIES I had to grieve the loss of the social accepted norms in order to embrace our new normal. This year I was determined to create a fun second birthday for Ellie that was food free, and as stress free as possible.

The first thing I realized was that I did not want to have the party in my home where I would be expected to provide food, or I would have to watch for cross contamination. The second thing I realized was that I still wanted to have the party nearby so that Ellie could enjoy it on her schedule, and I would not have to pack and bring a truck load of her broth formula. I began calling around, and the third thing I noticed was that all party packages came with food!

I took a step back. Balloons are a risk for Ellie due to corn starch. Food is a risk to Ellie. What can we do for a party that everyone would have fun, and these things would not be an issue. The zoo! The zoo would be a place that all ages could enjoy.

Hopeful, I sent an email to their birthday party coordinator, explaining our situation and asking if they would be willing to let us reserve their picnic area and hold a birthday party without the food portion of their packages. (By the way no balloons are allowed in the zoo for the safety of the animals, and monkeys like Ellie) I cross my fingers, and sure enough! Their events coordinator was fantastic. Kind, considerate, and more then gracious, she helped tailor a birthday party just for Ellie.

Our birthday invitations explained that our party would be for an hour in the zoo picnic area reserved just for us, but that they could arrive early and stay late to enjoy the entire day in celebration of Ellie turning two. Guests were welcome to pack a lunch or eat in the park, but thank you for understanding that there would be no cake or food provided due to Ellie's food free day. Instead there were more than enough carousel rides for everyone, and even though it was not part of the package, we were all treated to a train ride as well.

By the end of our time at the zoo, I was convinced I had made the right choice. I was so pleased with the fun had by all, especially Ellie, and especially her great grandparents who are in their 70's and who enjoyed the carousel and train rides as well. I would highly recommend the Sacramento Zoo as an FPIES and food allergy friendly birthday choice, and we may choose to do it all over again next year!