Tuesday, June 28, 2011

Onward...with patience.

Onion has been removed from Ellie's broth for about 4 days now, and we are seeing quick recovery. Her eczema is clearing and she seems to be moving back into the realm of more normal poo. Hooray! But once again we are in the place of 'now what'.

She finally had her feeding evaluation which has given us a few ideas of how to work on getting her to swallow, and so we have focused on getting her at the table with a bowl of water and a spoon, or meatballs, or puree, or zucchini of some nature, in hopes of moving more towards a 'full belly' feeling. She licks food, or feeds me. And says 'mmmmm'. Or pretends to chew. Or eats rocks and paper.

We have worked hard at making the food in the house 'safe' for her. Even though she can not eat it, we are focused on removing things that would actually hurt her (like corn or soy). That way we can spend less time screaming 'stop don't touch that' and more time letting her explore. Luckily we almost always have some sort of meat on the table that she can chew on without worry. Except for chicken, which should be ready for butcher the end of July.

So overall we are moving forward. I suppose. Patience has never been my gifting, and this waiting-for-healing-thing is certainly difficult. (can you hear it in my tone?) Or perhaps it is just this up-twice-a-night-every-night-for-two-years-thing that is wearing me down. Or maybe it was the full vomit reaction she had this weekend after attending a birthday party where she was inadvertently included in a cloud of aerosol sunscreen that was not intended for her, reminding me of how sick she really is. Or.....

I am going to choose to blame it on the fact that it is gloomy and raining on one of these last days of June. And remind myself of this all too familiar scene, which makes me laugh every time. Those people who wake up whistling? They drive me nuts.

The Leap

We did it.

June 1 we (I) made the leap and went GAPS with the entire family. Aside from being grain free, this also means we eliminated starchy, hard to digest vegetables (such as potato and most beans) that hinder digestive healing. To help with the transition I purchased a meal plan service from a GAPS website. This helped but also made some things harder for my perfectionist nature, as I tried to do everything perfect and ditch all of my regular recipes (not what I would recommend).

The questions I have received about WHY we have made this leap are all the same - why would you do that, and isn't that outrageously expensive? So here is the short of it:

We did it because the base for your immune system lies in your intestines, and your foundational intestinal bacteria are inherited from your parents. Inherited - not genetic. Having a child with FPIES says 'momma, take a look at your own gut'. Intestinal flora is shared from dad to mom, and mom to dad, as well (no explanation needed I hope). While not as visibly severe, Ellie's sister has her own issues. And if there is anything I have learned from FPIES it is that not all reactions or symptoms internally are visible on the outside.

Yes, it has been outrageously expensive. I think. Maybe not. Because I have not had the time to shop prices, and I already have one child who eats the equivalent of a $20 roast every 2 or 3 days. There are things that can be done to bring down the cost, and considering the end result, the cost is worth reworking the entire budget (in my humble opinion). This area is something I hope to work on and be able to share with other families in order to provide encouragement towards making healthier choices.

And if I may note, ignorance is always bliss. Always. Now that I have new information there is no way I can justify going back. I cannot choose between my children, providing one with what I know to be Real Food, and one with compromised nutrition, in an effort to keep my food budget down. Is it hard? Ab-so-STINKIN-lutely. But as a friend reminded me, anything worth it always is.

Wednesday, June 22, 2011

Hold The Onion

Pureed onion in the bottle.
Questionable symptoms.
Pureed onion removed from bottle.
Back to baseline.
Pureed onion in the bottle.
Questionable symptoms.
Pureed onion removed from the bottle.
Back to baseline.
Boiled onion into broth. Strain out onion.
Progressively worse.

AGH! The answer from the doctor?

Pull the onion. Too much sugar, too little intestinal enzymes. And way too much screaming when she fills her diaper. Oh well. What can I say? She gets her candida from her momma.

Monday, June 20, 2011


In the middle of the broth making, meat blending, egg finding, and night waking, it is easy to forget the progress Ellie has made and the celebrations we have in only a few short months time. It has NOT been easy, and the decisions have often been difficult, but we are moving forward. As Ellie nears her second birthday, I start to panic about small things like:
*she still has a pacifier
*she still eats from only a bottle
*she shows no signs of potty training....

And I am often reminded of these things when out in public. Comments such as 'what is in the bottle?', 'are you feeding her coffee?', or indignant 'she still wakes at night?' can catch me off guard. And though my insecurity may be high, my mommy radar often picks up looks when my 22 month old is reclined on my lap drinking a bottle (that is brown) instead of eating finger foods, or I allow her to have her pacifier without a second thought. She looks older than she is which doesn't help. She has always been in the 90+ percentile. So for sanity sake I must stop and force myself to think of how far she has come.

Last year on the morning of her first birthday she was gifted her first rectal scope and biopsy. But in the last few months things have changed. So as she nears her second birthday, here are a few that I do my best to remind myself of often:

- She is no longer on a lab made formula.
- She is showing almost no hypotonia.
- She has advanced in communication skills.
- She no longer reacts topically to many things.
- She has not had a full blown FPIES episode since we started GAPS.
- She is only waking twice a night now.
- She is no longer showing extreme sensory sensitivity and is even touching and putting some foods to her lips.
- She eats REAL FOOD!

And all of these things I must celebrate. They are progress. They are hope.

Friday, June 17, 2011

More Adjustments

A couple of weeks ago I received an invitation from a friend to bring my children and enjoy her pool over the summer. It went something like: I am not sure if Ellie can be in chlorinated water, but if so you are more than welcome to bring your kids and use our pool this summer.

My first thought was: Great!

My second thought was: Wait. Huh?

My third thought was: CHLORINE! oh no!

It never occurred to me. I remember reading information on chlorinated pools in my GAPS book, but it never stuck because I have enough to think about and research with each immediate FPIES hurdle. So I thought about, talked about it, read about....processed and processed it in my head. And then I had one of those 'ah ha moments'.

We have a whole house filter to eliminate chemicals, specifically chlorine, from the bath water. We decided to install it when we first moved here and in the bath tub Moriah said "mommy the bathtub smells like a swimming pool!". And when I researched further I found that the body absorbs more chemicals (chlorine) through the skin in a short shower than you could drink in an average day. Not acceptable! I declared.

Not once did I make the connection between the bath water and swimming pools, even with Moriah's help. DOH! Thank the Lord we have had that filter installed and have already made that change for our home. But sadly, and most uncomfortably, the path to healing and living healthy has created another obstacle to socialization: swimming pools. A body fighting to heal and rid itself of toxins through things like eczema does not need the added set back of spending time absorbing chlorine. So no pools for us.

I have decided that this summer we will be going old school. We will be finding those favorite swimming holes, river edges, and mountain creeks to get wet, along with a pool in our backyard filled with plain ole water. All things that are quite therapeutic I have been told!

Monday, June 13, 2011

No Going Back

This week I have been going through the pantry and reorganizing, cleaning, and attempting to get it under control. Our switch to a grain-free home has changed some of my needs, and a year of crazy has made every closet in the house an out of control mess. As I was moving items, tossing items, and debating what to put where, I spied a shelf full of Nutramigen AA. Formula. Corn. Nutrients that sustained Ellie along with damaging corn that set her back months, all rolled into a can.

I began grabbing the cans and hauling them into a pile in the hallway. Good riddance! And then I stopped. I was struck by fear. Just this week we cancelled the prescription and will not be getting any more. Letting go of this should be great, and signify progress. But I stopped and second guessed myself. What if we need it? What if she has to go back on it? What if something happens? What if ? What if? WHAT IF????

I can not live in the what if. I also can not let myself go back to the treatment that did NOT work for Ellie. No matter how crazy mainstream may think it is, I must stand firm, and we must plug forward. There is great fear in letting go of that formula. It was nutrition in a can - how much easier can you get than that?!? We could still go places, we could do things, we could pack it up and hit the road. Now, not so much. And the pull towards the 'easy' will always be there. But I now know too much, and there is simply no going back.

Thursday, June 9, 2011

More Than Poo

Did you take a picture of that poo? What did it look like? What do you think of this poo? What was the smell? Did it burn her? Did you file it? Make notes on the fridge. Was there mucous? oooooh the life of FPIES. You get the top half (vomit) and the bottom half (poop). And the joke among moms of PI kids is that we have poop portfolios. We take them to the doctor with us. We compare. We use them to guide food choices for our kids. We become obsessed!

And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.

We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.

For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.

Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.

Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.

The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!

The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.

Wednesday, June 8, 2011


Last week I had the chance to talk to a friend who I do not get to speak with often enough. As we caught up briefly on the phone she made a comment that I hear often. It goes something like "I don't know how you do it....that is why I was not given a chronically ill child". And I gave her the response that tells the truth: "I don't."

This comment from supportive friends catches me every time. I usually run past it, but this time it stuck. I spent the next week reflecting, and realizing one thing that God always promises: in the toughest times we stretch the most, see Him the most, and He grows us the most. God has used FPIES to change ME.

Today I reflect. And the pain is still very real.

February, 2011.
Think...think...think...think. I have to think. I'm not sure what to do. I'm not sure what I am missing. Who am I kidding? The doctors don't know. The specialists don't know. She has stopped growing and is beginning to look pastey. She has never had trouble with that before. My head hurts from trying to think this through. I know what they are thinking, and why they expressed concern. They think she is entering her failure to thrive. I know it. I know that I see a sick little girl. This formula is supposed to be helping her but it is killing her. I know it. I can feel it. I hurt for her. I have to cry.

Think...think...think...think...Allergist: We have to get her off the formula. But just almond milk? Seriously? How am I to respond to a treatment plan that is prefaced with 'she has about a month before we need to be worried about the malnourishment'. That is just not ok! But the GI says there is no medical proof that she can react to the corn in the formula...but this time he is more silent. This time he is less sure and this time he has a different look in his eyes. He always had more to say than this time. Think...think...think...think...And the nutritionist. Give her a multi vitamin made from corn and just start feeding her? What kind of sudden plan is that? Our best hope is lamb? This makes no sense. She is so sick. She is crying again.

I pick her up. She is weak, losing weight. Dark circles under her eyes and she is vomiting again. She is starving. I am holding my baby -as-she-is-starving. This is the United States! This is not some third or fourth world country where I have no food to give her! What is the matter with these people? What sick baby can live on homemade almond milk alone!

I put her back to bed. What time is it? I have to do something. I can not just sit here and cry. Why can't someone just tell me? Help.....we need help!

On my knees beside my bed. Sobbing. I can't stop. Dear Jesus I need to feed my baby. Dear God help me. Help us. Please please help HER. What do I do? The pain.....to not feed her.....Jesus PLEASE..please, please.

All I could do was repeat it over and over again. Please, please, please, please.

What? I listen again. 'I have already given you hope.' Is that the answer?

I dry my face and head to the computer, and type out an obnoxious and desperate email full of medical jargon and doubt, begging a doctor half way around the globe for help - mother to mother - challenging her experience and expertise, and regurgitating medical studies about the inability to digest or tolerate proteins. Relying on this last glimmer of hope I was able to go to sleep.

In my morning I drug myself to the computer, and what did I see? An email! Already? Remarkable! How could that possibly be? This woman could not possibly have the time.

With her help I have fumbled my way into getting Elianna on to actual FOOD, and the introduction stage of Gut and Psychology Syndrome (GAPS). Her biggest hurdle with me has been to un-do many of the things I have 'learned' about protein intolerance, food allergy, and food sensitivity. And I could never have been more grateful. What she provided was hope. Right in the body of her email. Don't worry. You can heal her. She will be fine. Who has ever even dared to say those words to me before now?

I started this post by mentioning how FPIES has changed ME. More than nutrition, and medical jargon, and becomming a real foodie, I have learned a most important lesson. I was humbled and brought to my knees, praying for guidance on what to feed my daughter. And this is where I hope to stay. How do I know when to move forward? Introduce a new food? Push through? Wait? Give it time? Change course? I DON'T. It is that simple. He has provided a plan full of knowledge and backed by medical evidence without me even asking that offers guidance, and rest to my exhausted brain. I don't always understand completely before I leap, but I do make sure I have spent time on my knees.

And what I most certainly know is that He designed Ellie. No knowledge will ever reveal the wonders of His world and what He has planned in its entirety. Only He knows every hair on our heads and exactly how He designed each and every one of us. And if FPIES teaches me nothing else, I hope I never forget the lesson of not knowing it all, not expecting to know it all, and getting on my knees. A hard HARD lesson for this mama.

Saturday, June 4, 2011

Wait....What happened to the fruit?

After a lengthy list of fails, Ellie's first 'safe' foods were the pit fruits. We gave her apricot, peach, nectarine, cherry, and plum without FPIES reaction. In the same botanical food family happens to be almond, so we trialled almond milk and began giving her that as well. Once we began GAPS with her I eliminated these from her food list, and forgot about them until asked about them a few times recently.

Ellie is no longer eating these fruits -yet. Her sugar intolerance test told us that she has virtually no enzymes to digest sugar or carbohydrates of any kind. Any thing that can not be digested causes irritation, and it would either feed her bad bacteria balance or sit in her intestines undigested to ferment. Fruits also provide very minimal nutrition and can even have anti-nutrients, if she is able to digest them at all. In short, feeding her these fruits now would get in the way of her healing and block proper digestion of the four foods she is currently eating.

The good news is that these fruits did not cause a completed full blown crazy TCell response launched by her immune system, resulting in a typical (or in Ellie's case often atypical) FPIES reaction. Because of that there is great hope that she will eat them in the future without any problems, and does not have a true intolerance to them. I can not wait to use almond flour to bake for her!

Friday, June 3, 2011


Ellie started asking for food last week. She asked to be at the table for each meal, and to have something in front of her. And I had not had the time to figure out how to accommodate that. Meat, broth, and zucchini. I kept thinking and thinking and thinking......

Finally I decided that I would put the zucchini in the dehydrator and make a 'vegetable leather'. I did that this week. I boiled it down as best I could, but due to the high water content of the zucchini it still came out paper thin. I took the first tray and dumped it into the garbage in frustration. I kept the second tray to show J.

J came home from work and promplty said 'no! dont throw that away! its perfect! it will melt in her mouth and give her something to start with.' And so became 'zucchini paper'. The next day I plopped Ellie in her chair at meal time and gave her a plate full of tiny torn up pieces of zucchini paper. And she loved them. She would put them in her mouth and say 'mmmmmm' and 'goooook' (look). That first day she asked for them all-day-long. Occasionally the dry pieces would stick and I would offer her water.

But day two things were different. She wanted those zucchini paper pieces and would go find them in the pantry, but she would refuse her bottle of broth. As the day progressed I was puzzled: was it the elk meat? was it not enough fat in the broth? was it the dehydrated zucchini? Finally in late afternoon she started to make faces and then proceeded to projectile empty her stomach all over herself, the kitchen and me.

It took her a few hours to recover from that, and at one point I thought that perhaps she had the flu. Her stomach would just heave, and the memories of all those petrifying FPIES reactions came hurrying back. (I am convinced they scar a mom for life)

But with time she recovered.

I, on the other hand, was a sobbing mess of disappointment. The vomit was primarily zucchini paste and I should have known it would be hard for her to digest ( a sudden increase in the amount of vegetable intake) and to limit her. But the thrill of her asking for food and having something to give her clouded my judgement.

At this point I am not 100% sure if I had put too much fat in her broth or if she had too much zucchini paper. But today she is not asking for it. ooooooh, to know the future. To have seen it coming. For now we have zucchini paper in the pantry.