FPIES No Longer

February is a significant month for our family.  

February of 2011 we started Ellie on GAPS. 

February of 2012 I wrote a celebratory GAPS-iversary post.  It was emotional remembering her first year on GAPS.  How could it not be? GAPS saved her life.  

February 2013 has arrived, and with it her 2 year 
GAPS-iversary. TWO years!  

The first year was intense, focused on letting go of FPIES hang-ups.  Themes involved moving beyond fear, adjusting to our new normal, and learning to see food as medicine.  

This year as I reflect I notice something quite in contrast from the first year. 

I notice that we no longer live with FPIES.  

Yes, Ellie still has healing to do.  We are still working on that leaky gut and detox system. But she is not chronically ill. 

Ellie has not had an FPIES reaction in over a year.  I can only think of one since starting GAPS.  And the farther away we are, the more it seems like a really, really bad dream. Explaining the bubble that we used to live in sometimes even seems surreal. Healing! Ah, glorious and most gracious healing.  

We no longer must sweep the floor religiously.
We no longer ask others to wash their hands before touching her.
We no longer panic over cross-contamination in our home kitchen.  
We no longer take pictures of poop for doctor's records.
We no longer make regular trips to the doctor's office for oxygen level checks.
We no longer fear for the vomit or pain or crying that comes after trying a new food.

Year two brought healing in small leaps for Ellie. And she is eating.  Once she starts chewing she should progress wonderfully.  She has special needs.  Many are the result of FPIES.  All I am hopeful she will conquer with time.  And if she doesn't?  Well, that makes her normal.  Every child is an individual that needs to be challenged, grown, and nurtured in their own unique way. 

As I reflect on year two I notice something very different about our family.  We are no longer simply trying to survive from one vitamixed bottle to the next.  Instead we are learning to live again. We needed some time to regroup as a family.  We needed to rework just about everything from our food budget to our family goals.  This year we will no longer be surviving our new normal. This year we will be living it. Stay tuned!

Join me in celebration of Ellie's healing.  And pass hope on. 

GAPS heals autoimmune disease.  Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune disease. And in the face of fear, it provides hope. (*)

There is always hope. 

Romans 8:22-25

Bites

We have bites! 

Ellie has been attending feeding therapy for a few weeks now. Her desire to please 'Ms. Blair' has been big, and we are using it to our advantage.  

Starting with cutting and stirring, we have moved on to playing with food, and trying to actually touch things that are not dry.  We have had small successes with a bite of sour cream, some bites of muffins, and big time bribery with an occasional Funky Monkey.  She is not ready for freeze dried food, or fruit, so we use this sparingly. It took one package spread out over many days to get her moving on to bites of other things. For Ellie she needed evidence that she would not choke before she would buy into taking bites.  

Her healing still holds many components, but overall she will not progress until she starts chewing. Her lip tie is making things a bit harder, but not impossible. She has shown that when she is motivated, she will give it some good effort. I am not sure if she will have to be directly taught how to chew and swallow, or if it will just take practice and time. Either way, we plug forward, and I try to remind myself that she will not be heading off to college on a bottle!

Onward Once More

Ellie's current plan is changing a bit.  Her allopathic doctors are pleased with her progress and feel that she is doing fantastic 'in spite of'.  She will be getting weekly speech and feeding therapy to help move her forward and off the bottle.  I am not a fan of where she is, and thankfully neither is her holistic practitioner, so we are changing her  plan a little bit in an effort to move forward.  

Her recent illness has shown that she (still) does not tolerate an increase in carbohydrates because of her systematic fungus. NOT because of allergic response, intolerance, or dissacharide deficiency, all of which are well on the path to healing. (insert big mama grin here)  

Her fungus battle began the first day of GAPS, and we took the edge off with a 6 month round of pure oral nystatin powder. At the same time we began increasing her Gutpro probiotic, fermented cabbage juice and eventually starting her on refined coconut oil.  These things took a long time to build, starting with pencil point amounts.  It took 6 months to get to one teaspoon a day of cabbage juice. Gradually we transitioned her to actual kraut juice, and onto raw coconut oil.  We began fermenting vegetables and adding those tonics in as well.  The ferments were pivotal to her progress.  And once we let her chug fermented coconut water we saw substantial healing.  This was hard to source, hard to make, extremely expensive, but entirely worth it.  It has done amazing things for her.

Once more we are again looking to add something else that will help her with the fungus.  This fungus is a frustrating, pesky and amazing thing.  Dr. Natasha explained it at the WAPF conference in a fascinating way.  Here is my summary:

When the body is in crisis and dealing with a problem - say a bacteria infection - it literally sends out a signal inviting fungus into the body.  The body then uses it to help protect and clean up the decay present.  Fungus feeds on decay, and is attracted to rot.  

Rot! Amazing and gross all at once. Fungus is also opportunistic and can spread like crazy.  So in other words, fungus is not necessarily the primary problem. Fungus can be the secondary problem, especially if it is being used by the body to clean up infection, or shield against metal toxicity (for example).  

From what I gather, our next step is to finish beating back this fungus, and a primary issue may show up in the process - something that is inviting the fungus to hang on.  I am guessing that this might end up being her continued issue with staph that has reared only after making some significant strides towards healing.  Either that, or the corn syrup solids she was on for 18 months just gave the fungus so much food we are retracing those steps, making it the primary problem. Fungus can adapt quite well.

Either way....where does that leave us....

Because her broken detoxification system is so severe, we will continue her on a topical glutathione supplement. This has been great for her. And we will try her on a new anti-fungal medication called Lauricidin.  

She is in a new stage of healing.  New clues and new milestones means new healing. And most of all it means she is nourished.  Her body has the nutrition it needs to deal with illness, and continue to heal instead of getting worse. For that I am grateful to God.

photo credit: ayblazerman

Retracing

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

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

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

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

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

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

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

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

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

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

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

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

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


photo credit 1: WilsonB  photo credit 2: telepathicparanoia

Confessions of Skipping Stages

The last couple of weeks have been a whirlwind of crazy in our home.  Ellie has been trucking a long quite nicely on stage 2, and onto stage 3.  We had some blood work done that showed some elevated kidney levels and so we did an ultrasound and a repeat. All is well and levels are only elevated slightly, determined to be due to her diet and not causing any harm.  This was super great!

Her biggest hang up at this time is that she is still on a bottle. This equates her almost to a 3 year old on a feeding tube, because all of her food bypasses the beginning stages of digestion and heads straight for her throat.  The process of digestion begins in the mouth, with saliva production, the triggering of important enzymes, and all kinds of fun stuff, so until she begins to chew her food we will be at a stand still in some areas.  

Knowing that she needs to chew, and wanting to spur her forward, I began to get impatient.  She is older, and she asks often for food she can not have.  A few months back I was stuck out of the home and far away at dinner time. I hate when that happens. I simply have not gotten myself organized enough at home to have a freezer stocked full of frozen dinners in the event of an emergency, and so I did my best and headed for the In and Out drive through. (Yes, it's true. Just wait, the confessions get better. Does it help that we don't get fries?)  As we were leaving the window Ellie says, "Mama, whatchu get me?" Silence. Mommy guilt. Seriously? So sick of this. 

"I got you nothing honey. There is nothing here. I am very sorry."  And she began to cry.  Not that tantrum type of cry, but that I am being left out and truly sad sort of cry.  Screw it. Knowing full well that the corn cross-contamination was guaranteed, I figured who cares, it isn't like she chews and swallows.  It is most likely this will never even make it to her mouth. So I tore off a very very very very small piece of Big Sis' patty and handed it to Ellie. (I know. I KNOW! I lost my mind!)

She rewarded me by doing exactly what I thought - she put it in her mouth and promptly spit it out and gagged.  After this long on GAPS, I figured there was no way she would react to this. So I gave her another. And another. About the fourth piece I hear Big Sis say in a panic "Mommy! Ellie swallowed it!" oh crap.  I spun my head around to see a grinning Ellie in the back seat. "Uh huh. I CHEWED. It in my belly. SEE?"  She then showed me her huge, open mouth.  OH DEAR.  Oh well.  I gave her another. YUP. She chewed. Jaw action and all. Little turkey. I am on to you! I felt like I had discovered a deep secret. You can chew! 

No adverse effects were had from this little endeavor, and wanting her to get moving through this hang up, I began to let her have access to foods that are considered advanced.  Chocolate cupcakes (full-GAPS legal) that she just licked. Dried mangoes she just sucked on.  OK that was about it. But still that is a pretty big no-no.  Somewhere around this time she began to have a funky smell on her breath.  I now know it to be the smell of yeast. Bummer. 

Somewhere around this time she swallowed a big chunk of dried mango. Not good. This one really made me panic.  In addition it became much harder to tell her no.  She really wants it. She begs.  It sounds something like "I really REALLY NEED it mama. Mama PLEASE buy me some mango." What did I do?

Overall symptoms did not seem to be pushing her towards problems.  But it was. It was building. I really should have paid more attention to this slippery slope. 

At the same time our hens stopped laying eggs and Ellie stopped pooping. Her toxins began building and I began to panic.  I have no idea what it is about the eggs that are so pivotal for her, but at that point they were very important. So we quickly decided to try her on some corn free, soy free, wheat fed eggs.  She did great for a few days, and then she got sick fast.  At the same time there were some environmental toxins - our air filter needed a filter change and I procrastinated and turned it off, she peed her mattress which appeared with this funky red mold stuff and I don't have it covered, Christmas wrapping paper out-gassing  Christmas tree in the house - all of these things were just too much.  It caused her system to overload and tip.  And tip it did. 

Sick.  The poor girl has now been sick for two weeks and going, as we back track and try to make the fixes.  

Would it have happened anyways with the eggs?  Stopping ours? Trying the others? Christmas exposure? Mattress toxins? Maybe. But she has cradle cap now. And that funky breath smell. And she has not had nut butter or anything else stage 3 for quite some time.  A few tiny bites of just a hamburger patty might have not caused the tip, but chocolate cupcakes and dried mangoes are really not a good choice.

Yeah, I get it.  I am human. I am a mama who wants her little girl to eat. But I listened too much to the little voice that said 'after all this time she certainly must be farther along than you think'.  I thought about all the times I did NOT push her forward when I should have, and figured I would not make that mistake now. I contemplated what other's said, and what other kids were eating, and got lost in my desire for her to be healed. I looked at the list from the speech therapist that encourages feeding fruit loops and cheez whiz in order to get kids to eat, and figured I needed to give Ellie some motivation.  And I blew it. 

The fantastic part is that she chewed.  The fantastic part is that she chewed a hamburger.  She won't even chew a cupcake. And through watching her during this time I have learned that she can chew - but she cant swallow properly.  This is important information. 

When I started teaching I had a mentor pass on some very valuable words of wisdom:

Never compare yourself to others for you will only compare your weaknesses to their strengths.

That applies to my kiddos, too. I would love for Ellie to progress faster and to shout from the roof tops that our GAPS journey was a quick jaunt through the stages from broth to sprouted grains. I would love to say that as we near 2 years on GAPS, Ellie is almost done, and has not needed any additional support.  But that is because I am comparing other GAPS Kids successes to her weaknesses. So be it.  She is Ellie. And that is who God intended for her to be. 

Romans 8:24-25

But hope that is seen is no hope at all.Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.

image credit 1: thesoftlanding   image credit 2: loop_oh  

Top Post of 2012

My top post of 2012.....

is on enemas! 

That's right. According to my blogging stats...the most googled, read, and talked about post is enemas. 

OH enemas, how we spent months and months using you during the GAPS constipation protocol. You were so helpful, and still are when the situation arises. 

If you would like to read the enema post click HERE!  As for GAPS and enemas....Don't forget there is an entire chapter on it! Please use that for guidance and not my post :)

Onward with 2013! Bring on the hope!

In health,
Nichole

Mourning: A Reflection on Social Media and the Events in Connecticut

Blog posts reflecting on the horrible recent events in Connecticut are many, and I had absolutely no intention of adding my own to the list. However, as the funerals are now underway, I am still seeing a whole lot of ridiculous blame and bashing in the news and social media. I am tired of looking at it. And have a hard time staying off my soap box sometimes. So I wrote my own. 

Beware of soapbox.

*ahem*

On a cool, autumn morning, an angry young man was working on the family farm with his brother. Anger swelled within him. He felt unloved, treated unfairly, and cheated. An argument ensued between him and his brother, and his anger consumed him. Quickly, swiftly, coldly, and before anyone could stop him, he grabbed his own brother and murdered him. His name was Cain. And his parents grieved over the death of his brother, Abel, and the devastation these actions brought upon their home.

Cain was not diagnosed with mental illness, he did not skip out on counseling or miss seeing his psychologist.  He was not on pharmaceuticals, off pharmaceuticals, taking the wrong pharmaceutical, or using an illegal pharmaceutical.

Cain could not fill your ear with stories of abuse from his childhood, blame arrested development, or journal about how he wished his mother held him more.

Cain did not get shuffled through a crowded school system, have an IEP, or endure bullying by his peers.  

Cain did not eat GMOs, he was not generations removed from a healthy diet, and he did not regularly enjoy a mind-altering diet of McDonald's and Twinkies.

Cain did not have a license to carry a concealed weapon, or purchase his weapon from a black market weapons dealer.

Cain did not receive vaccinations.

He did not suffer from a genetic disease.

He could not say he had no sense of morals, that his parents never took him to church, or that he couldn't remember the last time He talked with God.

And he could not blame the absence of prayer in his home, his school, or his government. (Seriously? This one really chaps me. I don't believe anyone told this to the Amish community who had the school shooting a few years back.)

And yet Cain (and Moses) (and Paul) (and others) all committed murder.

Please don't misunderstand me. I am certainly not saying that these things are of no influence.  I am not denying the fact that mental illness is on the rise, or saying that we are not setting our children up for failure. What I am saying is that everything could be done right, and things can still go wrong, because the world is made up of people who are responsible for their own choices. 

It is human nature for us to try and search out the answer to why something like this occurred, and try to find a solution that will keep it from ever happening again. But while sorting through it in our heads and hearts we must not forget one simple truth: the world is full of evil. 


Evil is there because He loves us.  It is there because we are given choice. Without it we would be mere robots unable to express true emotion - true love. Without choice there would be no evil.

Thankfully, because He does love us so, He promises to use those things in some way for His glory and good. The pain is still there.  The grieving must be done. But in this knowledge we find hope.

As we move forward in an effort to heal, let us choose carefully where to put our efforts and focus less on blame.  Let's focus on comforting those who are grieving, providing help when we can through financial means, and showing the evil in this world that it will not prevail because we have already completed countless acts of kindness in response.  Let's be thankful we live in a country where these incidents are not the every day news, and circle close around each other to make sure that it never is. Certainly let's examine what the events teach us about how to improve individually, in our families, and as a society. Please, let us teach our children that their choices reach eternity. But let's also step back to remember that there is nothing new under the sun.


Let us grieve for our loss and for the heaven that we all need. Let us extend grace to each other as we try to do better. Let us find comfort in the mercy that is new every morning. And let us watch to see what He will bring out of these ashes.

How Well Do You Know Your Cinnamon?

I recently became aware of this great and informative blog post from an amazing GAPS mama friend. I am on the learning curve of the importance of good quality herbs and spices. This article caught me by surprise! If you use cinnamon, especially medicinally, you will want to read this!

Hop on over to Healing Jake to get the scoop. 

                                                     Happy learning!

                                                                         Nichole

Speech, Feeding, and Occupational Therapy

Ellie received her first feeding evaluation when she was around a year old.  She began refusing a spoon at 10 months of age, and had several other sensory and milestone issues by 12 months. Since we were also in the limited foods, and FPIES what-should-we-feed-now guessing game, the feeding evaluation seemed to go nicely with the nutritionist recommendations. We had a great evaluation and she recommended follow up, but insurance didn't pay.  She had given me several things to work on and it took months to come close to conquering those, so I had no desire to go back for more of the same. 

Her second feeding evaluation came around the time she turned 2.  This evaluation was focused a lot more on her increased sensory processing issues, and what the therapist called being 'hyper aware'.  Ellie still had lock jaw and would not let me feed her a spoon or brush her teeth at this point.  Of course she was still on primarily broth at the time, so I think we became a feeding therapist worst nightmare.  Instead of suggesting foods, she focused on introducing us to skin brushing to help Ellie begin to process exterior input a little better.  Insurance didn't cover this either so we did not go back.  At home Ellie did not tolerate the skin brushing at all, and some very knowledgeable friends suggested trying pressure therapy so I did.  This worked for quite a while, especially during her sensory melt downs.  

We have better insurance now, and so I asked for Ellie to be referred for evaluation again.  Her neurologist felt she needed to begin with an extensive neuro-psych evaluation to eliminate Autism first (whatever?!).  I figured that would get us in the door to finding an appropriate therapy team for Ellie. So we went. Four hours later and a team of doctors and interns staring at us through a one way glass, we were told she does not have Autism (duh), and that she is on par for an average preschooler. In fact the doctor said it was quite remarkable the growth and adjustment that had been made in the last 12-18 months, to which I gladly explained was due to her change in treatment (we started GAPS).  We were then referred for speech evaluation, feeding evaluation, and occupational therapy evaluation, and told she appeared neuro-typical aside from controlled, food-induced seizures.

In addition to still being on a bottle, Ellie has been hugely attached to the pacifier (which we call a soother and she calls a soo-soo).  We told her that she could get a prize when she threw them all in the garbage. The conversation went something like this:  


Me:  Big girls don't have soo-soos.  
Ellie: I not big girl. I Ellie.
Me:  Are you a baby? You are not a baby! Baby's have soo-soos.
Ellie: I not a baby. I Ellie.

bear, soo-soo, blanket

So I figured we would be toting that stubborn girl's pacifiers around until she went to college. Alas, on the one day of the year I said I would never leave the house (Black Friday) Ellie walked over to the garbage, tossed them all in, looked at me, and said "What my prize?" Off to the store we went for her heart's desire - a stuffed tiger like her sisters.  It made this mommy sad that she simultaneously gave up her bear, which she has used for sensory soothing since she was an infant. Bear, soo-soo, and blanket were the must have trio for sleeping, and woe were we if we went out and left any of them at home.  She is hanging on to the blanket still, occasionally asks for a pacifier, but poor bear doesn't even get a glance.  Sad, sad day.

Last week we headed off for her fourth feeding evaluation, and arrived to find we were working with a speech therapist. Hmm.  I went with it.  She was very warm and put a lot of effort and energy into helping it be a productive appointment.  She had reviewed Ellie's super thick file and was more aware than most of the doctors we have encountered.  I did not have to go through her medical history much at all, which was incredible.  In fact, I think I might fill out one of those nice 'star reports' that they have in the office the next time we go in.  She admitted she did not have many specific foods to suggest, but gave me great ideas instead.  She suggested dipping activities, and to not focus on Ellie actually eating but to just get her to the table by making it desirable and fun.  My biggest hang up was that all of her MD approved handouts recommended ridiculous things for therapy.  Cheez Whiz? Seriously? But Ellie warmed up to her nicely and we went home armed and ready to cut up pancakes with knives, and play basketball with toothpicks and meatballs.  This all seemed quite ridiculous to me, but within a couple days Ellie was asking to feed me and joining us more at the table.

chair outside drying....

She has also always sat in the same chair eating her bottle the same way for 2 years now. The house is filled with tragedy whenever the chair must be washed and temporarily unavailable.  Now she has been eating her bottle in various places around the house! 

Overall we are making progress. It seems like a crawl but we are still moving in a forward motion.  I have been convinced her lack of chewing is due to her lip tie, but a friend's daughter (same age, same diagnosis, same lip tie) just began chewing away, so I am no long so convinced.  My absolute biggest hope is that we can get some solids into her and that might trigger a full night sleep.  At this point in the game my body is dragging from waking up multiple times every night. Thank goodness Daddy helps with that!

The Hard Stuff

"(The) GAPS introduction diet requires patience and perseverance."

~Dr. Natasha Campbell-McBride, WAPF 2012 Annual Conference

One of the GAPS circles I am privileged to participate in has coined this phrase about "choosing your hard".  I mean, come on, GAPS is hard.  And putting your child on GAPS is really hard.

There are lots of reasons for this.  The transition to GAPS usually means a transition to a whole new world of information, and in reality, this sometimes leaves even the best of us sticking our fingers in our ears and yelling "I CAN'T HEAR YOU" at the top of our lungs.  Ignorance didn't involve all this learning.  In fact, sometimes I think my brain is actually smoking from this learning curve hike.

GAPS is hard.  The learning curve is hard.  All of the newness is just plain hard.

One of the absolute biggest changes occurs in how we relate in the doctor's office.  I mean, let's face it - most of us are not already visiting naturopaths or holistic physicians. If we were then our kiddos probably would have stood a better chance at not needing GAPS in the first place. And asking your pediatrician for nutritional advice is not usually the best thing.  Or your gastroenterologist for that matter.  That's why they all send us to nutritionists for dietary help. Remember that the Standard American Diet includes low salt, low fat, low animal protein, and high fiber recommendations.  The reason for this is a whole other post, but it does not exactly follow the food-as-medicine principles.  As a result we are left explaining (and often defending) why we have chosen a holistic approach in order to heal our child.  This can be difficult and scary.

Another hard adjustment that comes with 'going GAPS' is the social implications. Everywhere I go someone is trying to feed my children.  Lollipops, candy, granola bars, and maybe even fruit. I am not of the innocent.  I have done it.  My classroom days were spent bribing good attention with the toss of a Jolly Rancher.  Unfortunately we are producing sick and allergic kids much faster than the general public can switch to a 'don't feed the children' mentality.  The result is the parent running interference between child and food anytime they leave the house.  This is hard enough with a severely allergic child. Throw in a bottle of broth that looks like you are feeding your infant hot steaming coffee, and you are certain to catch some unwanted attention. Hard.

Once in the land of broth, kraut, and kefir, it is now not so easy to leave the house. Family schedules, routines, outings, and extra-curricular activities all must be re-evaluated for the ability to bring food, as well as the ability to make it.  A quick jaunt through the closest drive-through is not an option.  Not packing enough might mean hungry children and a feeling of mommy failure.  This one has personally caused me a lot of anxiety.

And let's not forget the mountains of broth pots, blenders, juicers, and greasy kitchen tools that need to be washed all.day.long.

Hard.  These things are all very hard. They require making adjustments that are not for the weak of heart. And most people know that.

"That must be so hard".  "I don't know how you do it."  "You must never sleep."  "How do you get all that done?"  I have heard it all from commiserating friends and well-meaning strangers.  And they are right. It's HARD.  I don't sleep much.  And I really don't know how we do it. We certainly don't get everything done. Ever.

I slept an average of 3 hours for two years.  I still get up multiple times every night. I rarely shop at the actual grocery store.  Our 'convenience' food is frozen vegetables.  We raised special chickens on a suburban lot.  We sold the house and moved. We have gone to living on one income.  We are incredibly financially stressed. And it is all.so.very.hard.

But wait. It is not that I am just looking to complain. And I most certainly am not encouraging you to NOT do GAPS.  It is just that in the last month or so I have begun to reflect on the differences between the hard that we choose, and the hard that we don't.  

We did not choose FPIES.  We absolutely did not choose the hard that started us on this path.

But most of the hard that we are now living is by choice. 

There is something that changed when we made the leap to GAPS.  Without even really realizing it, we went from running from doctor to doctor looking for answers, from researching and reading and waiting for someone else to tell us what to do, from feeling like every food I fed Ellie was a sick game of Russian Roulette, from begging insurance companies to pay for her crappy MSG laden chemical food, from tracking down every ingredient or sourced chemical in everything from canned baby food to laundry detergent, from all of that and more...to hope.  

When we started GAPS a transformation took place.  It was not that we had a mapped out plan.  We still had to do a lot of figuring out within the protocols of the diet.  But we were given permission to be the ones who know best for our daughter.  We were given the information, and the medical studies, and the case studies, and saw the proof right in our own home, that there is hope and a plan for healing. From the unknown and the scary suddenly came hope, direction and a chance to watch God reveal some of the amazing ways He designed our bodies.  And we were empowered once more to do what we feel is right for our children - to keep them safe, and to keep them healthy.  

THAT is the hard we have chosen, and with great privilege. 

Everyone chooses their hard.  GAPS is the hard we have chosen.  And it is indeed a hard choice. But the alternative? That is harder. SO much harder. 

Can you choose hope?

Guest Post: GNOWFGLINS

Wardee is one of my all time favorite real food resources.  She even has online classes for those of us who are entirely visual in our learning style (hello, ME!), and podcasts, and recipes, and fermenting book, and ebooks, and resources galore.  Today I am entirely and completely privileged to have a guest post on her blog! So jump on over to GNOWFGLINS to say hello, and be sure to check out her GAPS series.

And don't forget...have hope!

Overwhelming Gratefulness

Yesterday and today I have been overcome with thankfulness for two things:

First, the amazing amount of hunters and fishermen who, for almost 2 years, have gone out of their way to supply us with food for Ellie.  From bear to ling cod, whenever our supply gets low someone shows up with an ice chest.  Some hunters have even said they had to carry their spoils for miles on their shoulder's, only to donate it all to Ellie's belly. Some have stopped to be sure that organs were saved when those parts are usually left behind, just to be sure that it met Ellie's needs.  That to me is some serious kindness.

Second, this Thanksgiving week I heard Ellie ask if she could be excused from the table.  We offered her many of the dishes on the Thanksgiving table, and watched her eat pumpkin muffins and taste pumpkin pie.  Thanks to understanding and adaptable family members, we said yes more often than we said no this holiday. Cross-contamination is no longer a cause for fear and panic in our home, and the floor gets swept because it is dirty, not because I am petrified she might touch a crumb someone has dropped.

We are picking up as a family.  We are repairing, adjusting, and healing from all things FPIES and all things fear. We are embracing our new normal much easier these days, and I am so very grateful.

Thank you to all who have been on this journey with us, and who continue to trudge along. To God be the glory-for it all.

Too Much

Tonight I updated the blog page 'What She Eats'.  It reads like this:

Ellie is now on stage 3 of GAPS. This includes nut butters, pancakes, squash, goat ghee, scrambled eggs, fresh juices, and others.  At this point in our journey she has too many foods to maintain an accurate list.  Amazing, eh?

SO whatcha think?  Pretty darn amazing, eh?

I am in awe that after thriving on broth, meat and zucchini for 16 months, she is now eating like this.  From nothing to too much.  From pain to healing. From fear to hope. God is good. Amen?

     

I can't wait to see what these teeth are gnawing on next!

WAPF 2012

My overall review of this year's WAPF conference was thumbs up!  I was able to chat with those I had not seen since last year, meet new friends, make new connections, and listen to speakers such as Dr. Natasha Campbell-Mcbride, Dr. Chris Kresser, Monica Ford, Dr. Thomas Cowan, Dr. Don Huber, and others.  Unfortunately my iphone camera went on the fritz when I got there, so my Rock Star photos this year are limited.

Here is one of me and Monica Ford of Real Food Devotee.  She was a Wise Entrepreneur presenter, and also happens to be the sister of my local GAPS chef. (They are both Rock Stars)

A major highlight of the trip was the release of Dr. Natasha's new book - GAPS Stories.  The book contains more than 50 stories of children and adults who have been healed using the GAPS diet.  Ellie's story, as well as that of another child in the GAPS Kids community, are now in print!  The book does not appear on Dr. Natasha's website yet, but will be for sale at gapsdiet.com soon.

Since this is my second WAPF conference and we have been on GAPS for almost 2 years, I was very surprised to have taken 12 pages of notes while listening to Dr. Natasha the first day of the conference.  Here are some nuggets I can share:

*The whole body regenerates: every.single.cell (we used to think the brain didn't).  Different cells form at different rates.  New stem cells emerge from an area of the brain every day. Every 3 months we have an entirely new liver. The gut determines if these new cells are born healthy.  A sick gut means they will regenerate poorly.

*It has been known for over 70 years that 85% of our immune system is located in the gut wall.

*Our immune system is never misguided.  Our immune system responds to communication from the gut, which can provide wrong data.

*Tcells originate from the thymus.  There are lots of Tcells with different jobs, but they all are ultimately controlled by gut flora.

*The hair is a storage site for nutrition. Grey hair results when the body is nutrient deprived and pulls the nutrition from the hair.

*Decay attracks candida.  To get rid of candida you must get rid of decay.  We now know that the body will  send out signals and attract candida.

*Colic is the first alarm bell, and if the parent doesnt deal with it then far more serious conditions will come.

*We now know that people who had measles as a child do not get auto immune disease because the immune system received a proper education. This is not the case with those who receive vaccinations.

This was just the tip of the iceburg.  The conference was packed full of information and my brain is saturated!

WAPF- the day before

I arrived in Santa Clara yesterday and picked up Dawn from Home Food Heals at the airport.  It is so great to have a buddy to share the conference with this year.    We went to dinner with two other Dravet Syndrome families last night at a local organic restaurant called Parcel 104.  It was really yummy food, but I am certain the beans served with my roast were not soaked and sprouted, because they reminded me that I need to go on intro.

One of the Dravet families we met is also active in the GAPS Kids community, so it was exciting to meet another GAPS family.  Their daughter has made amazing progress on GAPS, but not without a lot of hard work, tears, and perseverance from her parents.  These parents deserve the most courageous, and determined parents award. They have already conquered hurdles for healing that I can not even fathom.  My heart about burst when their precious GAPS kid asked me to read her an Amelia Bedelia book, and laughed contagiously at silly parts - so incredibly precious!

It was an absolutely fantastic way to start the weekend!

TODAY

Today is election day.

Today I am using this platform to say COME ON California.

Today we have the chance to join more than 40 other countries in taking back the dinner plate.

Today we can fight food politics with a vote.

Today we have an opportunity to change the legacy we leave.

Today we can hold accountable major corporations and corrupt government entities.

Today we can stop plugging our ears and start choosing something better for our children.

Stop making excuses.  Stop listening to the marketing lies.  Stop mumbling conspiracy theorist.  Stop calling it no big deal.

Vote with your eyes OPEN.

Just say NO to GMOs. And say YES to our future.

YES on Proposition 37! (and watch this fantastic video)

Truckin'

We have hit stage 3!  It's all eating from here.  Ellie is now eating winter squash, carrots, onions, leeks, nut butter, ....the list keeps growing.  Many of these things she could not tolerate at the start of GAPS and she is now doing great.  The fact that she can now eat 'sugary' vegetables means that she has fought back the yeast, begun detoxing properly, and healed beyond dissacharide deficiency.

There are odd adjustments going on in the family dynamic as she begins to eat.  Often she gives a surprised look when she asks for something and we respond with "YES!", instead of "Not yet! When Jesus heals your belly! but SOON!".  All day today I heard her singing her made up song of "pum-kin muffin yum-ME! pum-kin muffin yum-ME! pumkin muffin yum-ME to meeeeeeeee".

Aside from textures, she still can not truly chew.  This hang up is due to missing some developmental milestones, but also due to her lip tie. After her last growth spurt the restriction on the left side of her face became much more visible.  Her lip on that side does not move the same when she talks, and sometimes turns blue when the muscle is strained. I am certain the issue of chewing will not be fully resolved until she has the surgery she needs.  Unfortunately we can not afford it yet, so it will have to wait.

In the meantime she compensates by tearing microscopic pieces off of pancakes or muffins, and we are working on textures with things like nut and seed butters.  We are doing our best to offer her more and more options within her chewing limitations.  We have to think of her as a beginning eater, and remember she is susceptible to choking.

It's truly a whole new world around here.  As we near the end of Team Ellie's 6 months of prayer, I see God's faithfulness. I heard Him say clearly to establish a team of prayer warriors, and I heard Him say that 6 months was the time frame.  During this 6 months He has revealed hang ups and hurdles, and amazing healing. Thursday will be the 6 month mark.  And she is truckin', leaving FPIES and EGID in the dust.

Outgrow: an FPIES reflection

I'm a literalist. When it comes to the sharing of facts I find it completely frustrating when information is obscure, misleading, or not entirely clear.  For this reason, and many others, it did not take long on the FPIES journey for the phrase 'outgrow' to make it to the top of my list of pet peeve's.

Most do outgrow, will likely outgrow, might outgrow, probably wont outgrow, may never outgrow,...are all phrases I have heard, and phrases I loathe.  Why such passion for such things, you ask?  It's simple. What in the heck does 'outgrow' mean?  It's obscure.  It's misleading. It's unclear. And when dealing with a sick child, it is hope stealing.

Children outgrow the terrible twos, and they outgrow being afraid of the dark, and they outgrow the need to talk on the phone.  They don't outgrow barfing, or reflux, or diarrhea, or failure to thrive, or any other sign that something is wrong.

In less flattering times I have retorted sharply when an inquiring mind wanted to know if 'this is something she will grow out of'.  Well no, I have responded.  It won't just magically disappear, but we do hope she will heal beyond these limitations. oops.  Not my finest moments.

In less than complementary conversations, I have mentioned to medical professionals how irritating it is that there is no definition for what 'outgrow' truly means.  They throw it around as if it gives an answer, when it really says nothing.  They, of course, have had their various explanations of how sometimes the immune system or intestines or whatever just simply heals on it's own or grows past this struggle or matures to a certain place or begins to whatever.  Like a miracle? I wish I had asked.

I have my own definition:  doctors and society use the phrase 'outgrow' to mean something that may at some point in time stop and no one knows what, how, or why.

WELL....I'm a what, how and why kinda gal.  As in WHAT is going on medically, HOW did it get that way, and WHY did it change, go away, or stay the same.  It's kind of like how curiosity killed the cat.  I am certain this feature of my personality will be the death of me.

Indeed miracles happen and many of these situations may be just that - an unexplained miracle in the medical community.  But many times it is truly that they just don't know the reason or have not made the connections.  It makes me so sad that there is an abundance of information about immune system disease, and how they ALL can be healed or at least dramatically improved, yet the medical community in general continues to stay within their little boxes of no hope and outgrow.

These are not helpful explanations.  These are non-explanations.  And here is my response:

Never accept 'that is common' or 'they will outgrow it' as an explanation for your child being sick, hurting, or showing signs of distress.  

Ellie is now 3.  She has won the sickest kid award in just about every competition we have unwillingly entered. And today she is a marvel.  She is eating, she is thriving, and she is saying good bye to all of those symptoms that once puzzled even the best.  

She is not outgrowing FPIES. She is healing. And there is hope for even the most hopeless.  How do I know?  Because I am an expert. I was there.  I was one of those moms. At the very worst we heard 'expect her to at least be on only elemental formula well into her school aged years'.  

I thank Jesus every day that one doctor half way across the globe took the time to answer a very obnoxious and lengthy email from one desperate mommy of a dying child.  I thank my God every time I look at my girls and know what our new normal will do to create a legacy of hope for their future. And maybe someday their story will be common, and hope will be found for so many more. Until then...

"you teach, you teach, you teach!" Dr. Weston A. Price

On the Move

Yesterday we met with Ellie's new pediatric G.I.  She has not had an established G.I. for over a year, and in order to get her feeding therapy services we had to get one on board with the team. The appointment went well, but was the first time in a long time that I had to give her entire history from a G.I. perspective.  He was great, young, new, and honest.  He said he has never treated a patient as severe as Ellie so he did not have a lot of wisdom to share.  That actually caught me by surprise.  Not that Ellie is 'so severe', since I have heard that far and wide from every specialist we have seen.  What was surprising was the questions he asked and the learning he wanted to do.  That was refreshing. I told him I appreciated his telling me there we NO procedures he would recommend at this time; that alone is very wise.

I was also jarred back into thinking of Ellie and her progress, because most days I see a little girl who is no longer sick. We are in a new place where instead of fighting for answers, doctors see the improvement she has made and ask me HOW.  I love that.  I love that when they ask me 'what DOES she eat?' I have to stop and think and sometimes forget something.  What a change from times past!

We have spent our fair share of time waiting. GAPS is a very individual diet, helping to peel back layers and reveal core issues that are preventing healing.  We have played that game for 20 months now.  For Ellie, much of the time has been spent just waiting for her body to heal.  The rest has been dealing with individual healing hurdles.  5 steps forward, 3 steps back......2 steps forward, 1 step back.....it has felt like a crawl.  With prayer paving the way, the push for foods has begun.

It has been so long since Ellie has had an FPIES reaction that it is beginning to feel like another lifetime.  She still has allergic response to corn and I suspect that may be the situation for many months (or years) to come.  But this week we had a major success.  This week she ate her first pre-GAPS FPIES food fail.

Ellie failed so many foods pre-GAPS, and reacted to so many foods at the start of GAPS, that we have reached a point where we can no longer avoid them all.  This has been an amazing turn of events.  This has been the place we have been waiting for. This could have been ugly, but instead has shown that the recommended 2 years on GAPS is more than just a guess Dr. NCM has thrown out there.  We are nearing 2 years and we are finally moving forward.  From a stand still, to a crawl, we are getting ready to run!

Ellie has now added virgin coconut oil to her diet.  Up until now she could only tolerate refined.

Ellie is now eating fresh carrot juice.  Up until now she could not drink even one drop without the sugar causing her body bacteria to explode.

Ellie is now eating fresh apple juice.  Ellie WAS FPIES to apples.

Did you catch that?  WAS.

For the first time we can step back and say...wait. WAIT! Was FPIES.

For the first time we can actually say FPIES will someday be behind us.

For the first time we can say that FPIES, EGID, leaky gut, seizures, and all of her complications will eventually be gone.

Today Ellie is trying her next new food.  Today is day TWO of homemade goat ghee.  Ghee is clarified butter. Ghee is DAIRY.  And dairy has been banned from the house for over 2 years.

So far, so good.  She is on the move.  She is doing great.  We are SO incredibly thankful.  I can hardly wait to try her next new foods.  Stay tuned!

New Hope

We are here.  We are adjusting.  We are nothing but a house in the country with some chickens and a bunny, trying hard to be a farm.  Stress and busy days have not left us yet.  But things are good.

The first week was like some nasty fraternity initiation.  It went like this:

Saturday: move, bathroom and kitchen sink not usable yet, go back to old house for baths, etc.
Sunday: finish moving, spend the night with Ellie vomiting all over the house like she has not done in over 6 months.
Monday: daddy to work, mommy to unpacking, kids to running a-muck, and then spending the night with a major power outage.
Tuesday: rain. rain with many of our boxes and items on the back patio still since we have no room in the house.
Wednesday:  out of coffee and the realization there is no Starbucks decent franchised coffee shop within a 20 minute drive.
And so forth, and so on, and on and on.

We have downsized from 2400 square feet to 802.  No one really seems to mind except for me and my OCD need to organize.  The neighbors are awfully close with their goat farm which brings delightful things like stench and flies, primarily in the evenings.  We now have to get up at the crack of dawn and schlop out to the chicken coop to free the waiting, squawking hens.  We have no reliable internet...yet.

It's been bumpy. But it's good.  We are comfortable. I am at peace. There are adjustments, but having grown up in a small farm town there are a lot of things familiar and I don't feel totally unequipped.

I LOVE our new address.  It's on New Hope road.  I LOVE that our house is so small that I can always hear the kids, and that they never feel too far from us.  I love that there are no neighbors blaring the 'F' word, and that Big Sis' feet are absolutely filthy by 10 a.m. every day. I love that we are purging like crazy, the night sky is full of stars and the water is fluoride free.

Things have been hard.  Things have been crrrrrrrr-azy.  Things have been a long haul.  But we chose this.

We chose this hard.

We didn't necessarily choose *how* we got here, but we chose this adjustment. We don't feel sorry for ourselves and we don't regret it. It's better for Ellie. It's better for Big Sis. It's better for us all.

It's all very new. New community, new house size, new way of living, new priorities, new goals....new HOPE.  38 months into FPIES and one thing is absolutely certain - FPIES has changed us for the better.  It continues to change us, push us forward, refine us and mold us.  It has taught us how to hope.