Monday, October 29, 2012


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.

Saturday, October 27, 2012

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

Wednesday, October 24, 2012

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 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!

Tuesday, October 23, 2012

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 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.

Friday, October 19, 2012

Navigating Air Purifiers

Thanks to the sale of some furniture as well as a monetary gift from some friends, we were able to purchase air filters.  This was a hard purchase for me because the best of the best are thousands of dollars, and the science behind some air filtering methods is controversial at best.  Also, just like water filters, many are restricted and unable to be purchased for shipment to California. We ended up with two - one that is in the main living area and one in the girls' bedroom.  These are doing a good job of keeping up with the toxins in the house as well as things like the wretched stench from outside in the evenings (oh! We have moved! Guess I should do that blog post next).  This has been one of the ways we know they are working! No smell in the house.

The amount of research I did was quite extensive, and absolutely exhausting, so I thought I might share a little to save someone some time.

Here are the basic filtration systems currently being used in air purifiers:

1. pre-filter. This is a plain filter that works to capture large particles before they hit the more important filters.  It extends the life of the other filters and is rather important.

2. HEPA filter.  HEPA filters are the most efficient for catching large particles such as dust, dander, and even some bacteria.  They work against mold, but there are studies showing that HEPA filters can also get mold within them and have issues so it is recommended that you remove the mold source before using the HEPA to clean it up.  Just a HEPA filter is not enough because it only removes airborne particles down to .3 microns.  Most household contaminants (VOC's) such as formaldehyde are smaller than this.

3.  activated carbon filter.  This is probably (in my opinion) the most important thing to look for in an air filter.  The efficiency and size of the activated carbon in the air purifier will determine what particles smaller than .3 microns are removed.  From what research I did, it appears that activated carbon filters are effective down to .1 microns.

Most of the super expensive filters stop here and use the first three filtering systems.  Just like with a water filter, the more activated carbon there is for the air to move over, the more effective it is.  These expensive filters are large boxes of activated carbon with HEPA filters.  Most of those filters cover one average sized room and cost around $1000. We obviously could not afford this, and I also wondered about the particles smaller than .1 microns that would be missed.  However, any additional filtration methods came with controversial reports regarding safety.

4.  UV Lamp (germicidal). This filter gets a bit tricky.  It kills micro-organisms like mold, germs, etc. and also has several variations whose safety are questionable.  In general, there are either UV lamps that kill germs with ultraviolet radiation, or those that generate ozone. Both have risk factors.  If the cover comes off of the ultraviolet radiation lamp you can receive dangerous exposure.  On the other hand, there is still much controversy over appropriate levels of ozone.  It is hard to find an air purifier that does not have one of these, so we chose one with the light instead of one that produces ozone into the air.

5.  Ionizer. This is one of the components that caused me the most stress when researching; I really did not like what I read.   An ionizer changes the charge of ions in the air so that particles which are normally airborne become heavy and fall to the ground.  Theoretically you then sweep or dust them up, or they become airborne again where they are then again made heavy and fall to the ground.  Many say ionizers are great, are not problematic  and have improved their air quality tremendously.  Ionizers produce ozone at varying levels. There are also some studies showing that those exposed to ionizers have particles in their lungs that are not normally found there.  This made me uncomfortable for the girls' bedrooms where they would be lying flat and breathing the filtered air.  For this reason I purposefully searched out filters that had extremely low (virtually no) ozone production, and was excited that the one we purchased for their bedroom has the option of turning the ionizer off.

6.  Electrostatic filter.  An electrostatically charged grid traps particles and is very effective.

7.  Photocatalytic Oxidation (TiO2) filter. This technology is used by NASA and the newest.  This filter is 99.99something-crazy% effective for cleaning the air of VOCs.  The potentially questionable part is how it does that.  This filter oxidizes the particles and destroys them.  Extensive tests have shown that what goes in does not come out and chemicals are indeed destroyed.  The problem is that there are not conclusive studies on what comes back out of the filter.  The chemicals are destroyed and changed into something else, but I could not find any studies saying that the new particles being inhaled were actually safe.  If formaldehyde is destroyed, what does it become?  There are no answers for that yet.

There you have it.  More information on air purifiers than you have ever wanted to know.  We ended up with  two  filters that include a combination of the above systems and are proving to be very effective. If you are in the market for an air filter I recommend checking out Friends of Water who have already done the narrowing down of choices for you.  We purchased some great options there for very reasonable costs.