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