Saturday, December 31, 2011

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!

Thursday, December 29, 2011

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 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.

Friday, December 23, 2011

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.

Tuesday, December 20, 2011

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.

Thursday, December 15, 2011

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.

Tuesday, December 13, 2011

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!

Monday, December 12, 2011

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?

Tuesday, December 6, 2011

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.

Friday, December 2, 2011

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 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.