Wednesday, March 30, 2011

I Think I Blew It: A Reflection on Probiotics

When Ellie was still an infant and I first asked the pediatrician about probiotics he said 'Sure! Let's give it a shot! Anything to help keep you breastfeeding.' But I didn't. When I asked the GI he said 'well, it certainly won't hurt. But there are no studies showing that it is beneficial.' And I had a lot of other things I was processing, so again I didn't. When I began investigating GAPS and SCD as an alternative treatment for Ellie, everything said get her on a probiotic right away. But I didn't do it. When I contacted Dr. Natasha she was adamant that I needed to start one right away. And again, I didn't.

Why not? What was my hesitation? Part of the problem was I did not have the time to do the research. I was impressed with the need of getting her food and off of the formula, and that (along with life) pushed the probiotic investigation farther down the list.

What I now know about probiotics:

-There are more than 500 types of bacteria living in the human GI track.

-Most of them live in the colon (lower intestines), and they are not supposed to be living in the stomach.

-Only 500 or so of these bacteria have been discovered and named. Many of them can not live outside of the body so there is no way to test for all of them accurately.

-The most common ones found in the probiotic aisle of the supermarket are not enough to do any good and a waste of your money.

-Probiotics are bacteria, and must be cultured on something. This can be anything from soil to vegetables to meat to human. Sensitive systems CAN react to these 'root' cultures.

-Probiotics often come with 'fillers' that are not necessary and can make them less beneficial. Some even have sugar added!

-Taking a probiotic in a capsule is less effective than taking a powder because your already compromised body must digest the capsule first.

-Even 'good' bacteria can over grow and cause problems in a GI system. In fact, any of the bacterias can over grow, not just 'candida', which is the most discussed.

-Bacteria over growth can spread to the mouth, ears, throat, sinuses, and cause additional problems such as distorted taste, sensory issues, ear infections, and mucous.

-Probiotics can also be taken in the form of fermented vegetables, such as properly prepared sauerkraut.

The majority of people can benefit from taking a good probiotic blend, simply due to the environment we live in and the food we ingest. So what is the problem? Why the hesitation with Ellie? This is two fold.

Problem 1: What is the probiotic cultured on? While it was easy to read the labels and see if a particular probiotic included fillers, it took much more time to contact manufacturers to find out what their product was actually cultured on. While only one company refused to disclose that information to me (it's proprietary), the rest were very helpful when I explained Ellie's condition and why I was asking.

Problem 2: Should she have a probiotic blend or a single strain? Dr. Natasha (GAPS) promotes that it is extremely impractical and expensive to find a lab that tests for as many bacteria levels as possible in the intestines, and that the tests are unreliable and limited. The best course of action is to take a quality probiotic with as many strains as possible to help aid with healing. At the same time as I began investigating this, other FPIES mamas began the trek to visit the very knowledgeable doc in New Jersey. I waited to hear what they learned, and many of them were prescribed single strain or very specific probiotics, with instruction that too many or too much would be too hard on the little FPIES bodies. These were two conflicting perspectives.

I hemmed. I hawed. I researched and I read. And I think I blew it. I suppose in the back of my mind I wished that Ellie would have progressed and done fine without having to battle a probiotic, and so we moved forward with vegetables. First zucchini, then onion, and then an epic fail for carrots. Her reaction to carrots was so damaging to her system that we have had to go back to bone broth only in order to help and allow her to heal from it. As a result we are stuck.

Ellie cannot move forward without a probiotic. She may need some additional supplements as well, but my desire to protect her and adapt GAPS to her specifically has caused me to delay. Have we lost time? Perhaps. But if I am to trust this world renowned doctor who has responded to me directly, how am I to contact her at this point for more help only to say 'well, yeah, that basic thing of adding a probiotic? I didnt do it.' Now I am convinced Ellie needs it - that she must have it. I have some regrets and mommy guilt for waiting, but at least now I move forward knowing it is the right thing and what she needs.

There is one strand of intestinal bacteria that is particularly hard for some people to tolerate (streptococcus thermophilus), and so I have picked a probiotic that is free of it (GUTPro). Until it arrives we are giving her some extremely small doses of the 'proprietary probiotic' because it is free of fillers and has a great reputation. She is already showing signs of die off on day two, so this part could be a long battle. Perhaps that was what my mommy-side was trying to avoid this whole time. We will see how it goes!

Saturday, March 26, 2011

First Fail After the Broth

I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.

The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.

The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.

I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!

Sunday, March 20, 2011

Ellie's Current Progress and Plan

We are about 5 weeks into the GAPS protocol for Ellie. Let me back track and explain what we have been doing in summary (watch out for poop talk!)....

Taking my first email from Dr. Natasha I began a new food plan for Ellie. I began the research for grass fed, organic meats that were also soy and corn free. I have done reading on allergy boards where others say that they can react to major triggers when eating meat of animals that have been fed them. I also know another FPIES mom whose son reacted to the corn in eggs. I was able to find lamb, beef and pork to start out with.

We started slowly, adding one teaspoon at at time to her bottles. We did not push her, and a couple of times we had to adjust the bottles in order for her to take them. It took a couple of weeks to get her off the formula entirely, and the last few days she really held on, wanting that scoop.

When she got down to one scoop of formula in each 8-9 ounce bottle, I began using the Vitamix to liquefy the boiled meat. I added 2-3 ounces of meat to her bottles. She ate around the clock, every 1 hour to 1.5 hour, 24 hours a day. This coupled with the need to warm her meat smoothies on the stove top has been rather restricting, and exhausting.

To date she has had these meats and broths: beef, lamb, pork, duck, venison, buffalo, and chicken. She liked the lamb and pork, but gagged on the beef. It seemed to be a sensory issue since the beef had a much higher fat content. And she truly seemed as if she just did not like the duck. Imagine that. I marveled. She was showing preference with food, and she could afford to have an opinion on the matter. A milestone!

During this time we unsuccessfully trialled a probiotic and have not had her on one still. I also did my best to add a teaspoon or so of boiled beef liver to each bottle to add vitamins and nutrients. Including bone marrow, skin, and liver in each bottle was a must for healing according to Dr. Natasha. What she failed to mention was the GAS that liver can cause! whew!

It took about 3 weeks for her stool to begin looking more normal (another milestone), though very dark and tar like. This was my cue to move forward. I purchased organic zucchini, and following direction from Dr. Natasha, I peeled it, de-seeded it, and boiled it to death. I then put it in the Vitamix with broth and liquefied it.

After being so successful with the bone broths and boiled meats, I have no idea why I was so nervous when beginning vegetables, but I was. It was food trail panic all over again. We had no safe vegetables at this point. Scary stuff!

I started with one teaspoon of zucchini in her bottles, gradually increasing it to 2 ounces, over the period of about 3 days. And she loved it! For the first time in her life she began to have regular looking stools, and they increased in frequency. After three days we added white and yellow onion, boiling it down and pureeing it with the zucchini. She really seemed to like this addition. I think it added a sweetness to the meats. We did this for two days and she began pooping every day! It was poop-party time in the Sawatzky household!

(I have not compiled all of my notes so I hope I am getting the time frame correct...)

Day 7 I added peeled and boiled carrots to her mixture. She got a little more gassy and seemed to have something a little bit off, but nothing to be concerned about. We waited for the poop and it looked orange and I got a bad feeling, but nothing tremendously noticeable.

Day 8 I added leeks. Boiled and pureed. And there was some funny poop. It was soft and pliable but looked like deer poop (pebbly). I panicked. Is this constipation forming? I headed to the Bristol Stool Chart and it was actually leaning towards looser stool, which worried me even more. A reaction??

Day 9 I threw in some garlic. And later that day she showed tummy trouble. And had the same concerning deer-like poop. We were moving too fast. I knew it.

I whipped back out my emails with Dr. Natasha...and yup. Move slowly with the vegetables. Why? The fiber in the vegetables may not be well tolerated and her intestines need time to adjust. The bone broth and pureed meats are the easiest thing possible for human intestines to digest...needing virtually no digesting at all. Adding vegetables was shaking things up a bit, and in fact, I made note that we saw more 'die off' type symptoms.

Day 10 We started over. Zucchini only. Waited for the poop. Back to the mushy blob.

Day 11 Zucchini and onion. Looked good.

Day 12 Zucchini and onion. Looked good. And considerable less stink. I took a second look at the Bristol Stool Chart. Oh ....wait. The type of stool she was having is considered OK? Oops. Hmm. Well, better safe than sorry!

Yesterday: We added back in carrot. Only carrot. No zucchini or onion. I want to see what happens with just carrot.

Today is day two...and so far no poo. (hey that rhymes!) Here we hold. She has been gassier and fussier, and I can't help but wonder if the sugar content of the carrots or the beta carotene is of concern. I also remembered that way back 'in the day' I prick tested IgE positive for carrot allergy. Interesting. And another thing...I am about 99% sure that we never trialled carrots prior to diagnoses, but my record keeping was spotty at best in the beginning.

Another interesting thing to note is that with the introduction of vegetables she began sleeping longer increments at night. Hallelujah. Waking up to feed her more often than a newborn for four weeks was making it difficult to function during the day, and I am still working my 'real' job at 75%. Ugh. I needed sleep so these new four hour chunks at night have been heavenly. Except for her new problem of peeing all over.

And today we wait for the carrot poo. This is where the GAPS individualization comes in to play. Certain vegetables are better than others....certain vegetables are easier to digest than others....certain vegetables should be avoided by anyone....and certain vegetables will need to be avoided by Ellie. Her immune system, her environment, her inherited toxic load, her intestines, her history of food trials, her foods she had already eaten and failed. All part of the puzzle and part of the protein intolerance game. But it feels so much easier to handle with the progress she has made!

Thursday, March 17, 2011

Our New Normal

I have always wanted to go to Italy. Seriously. Ever since college I thought it would be fantastic to visit Rome. The history there would be incredible. Granted, I have heard its pretty dirty and Venice canals are pretty mucky. But seeing the sights would have to make it all worth it. Right? Who wouldn't want to go to Italy?

But it will be a long time before I can consider traveling to Italy. I can't even figure out how to get broth to New Jersey. So this summer we are going to focus on camping. That is our new normal.

Our new normal does not include restaurants, but it does include family dinners. It includes being at home most of the time, and packing an ice chest when we go out. It includes making hard adjustments such as doing almost all of our grocery shopping at the farmer's markets, which requires much planning because they are not open 24-7 like the local Wal*Mart. It includes very little sleep, and feeding a bottle to a 19 month old multiple times throughout the night. It includes almost needing a nurse for child care, and wondering if we will ever get to normal things like potty training. It includes hours in the kitchen, and rethinking,...well....just about everything. It is our new normal.

I was truly blessed to be introduced to the new normal last September. A new friend knew exactly what I needed. It was divine timing. Here is the famous poem that touched me tremendously. Grab a tissue first if you are the parent of a chronically ill or disabled child. And by the way, my favorite flower has ALWAYS been the tulip. Good thing I don't believe in coincidences!


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Holding My Breath

Today Ellie slept a lot. Yesterday we started carrots. And once again I found myself holding my breath. Is she growing? Is she sleeping better? Is she reacting? Two weeks of great progress and no symptoms. Yet it all comes rushing back like a bad dream. It brings me to a place where I wonder....regardless of the progress we make, or how old she gets, will I ever breathe normally? Or will I forever be at risk for that sudden streak of panic? Those moments where all of the possibilities run their marathon through my head while I remain breathless?

She has made incredible progress over the last few weeks. And then...

Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.

Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.

And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.

Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.

A Pause For More Miracles

While attempting to locate lamb bones, I contacted the company that supplies grass fed organic lamb to the local Whole Foods, Trader Joes, and Natural Foods Co-op. The customer service I received was incredible and personalized. They asked me a few questions about what I was looking for, and then said they would arrange for bones to be delivered to the local Whole Foods for me to pick up. I thanked them for their time and briefly stated that it was for my daughter who only ate meat. The response? We are glad to help and the bones are donated. We have let them know you will be picking up the entire case.

Amazing. The word of the year.

I have received permission to tell you who they are:

Atkins Ranch

Not only do they have fantastic customer service, they also have a fantastic product. Take a look at their website for more information.

Thanks again to Atkins Ranch!
What an amazing gesture of kindness for our Ellie!

The Method To My Madness

Who is Dr. Natasha Campbell-McBride?

- She is a doctor of neurology
- She is a doctor of nutrition
- She obtained her first degree in Russia
- She obtained her second degree in the UK
- She practices medicine in the UK
- She previously worked as a neurosurgeon
- She is the mom of a child previously diagnosed with Autism
- She has done extensive research on the 'gut/brain connection'

While she has her own field experience and medical work dating back to the early 80's, she also works with other doctors all over the globe and does an excellent job of compiling research. This includes the Specific Carbohydrate Diet. (You may find a bunch of websites dedicated to which is 'better', GAPS or SCD, but the truth is they fall in the same group.)

Her original focus was to heal her son, and investigate the autism spectrum. What resulted was a compilation of information connecting intestinal health to overall health and nutrition. She promotes underlying health and healing protocols based on medical research and experience, combined with the ability to recognize individual gut and immune system conditions.

To me, she was the unheard of - medicine combined with nutrition.

Now I do not wear rose colored glasses. I am not/was not hoping for a miracle fix. And I did not randomly pick a doctor off of the internet. I had done my research, which included speaking to other GAPS homes and patients over the course of two years. But seriously, ....SERIOUSLY. What did we have to lose?

So I emailed her, doubting I would ever get a response. Yet to my surprise, I received a personalized response to Ellie's condition within 24 hours.

And what I received was hope. HOPE. Let me say it again:


And the best sentence in her email?
"...children at her age recover quite quickly once you start feeding them properly."

So you see, there IS a method to my going out on a limb and choosing a path other than what Ellie's doctors can give. And this method does not come from the quack witch doctor on the corner. It comes from a brilliant, experienced, doctor of neurology and nutrition, who has made it her goal to help other mothers around the globe. Not with a magic pill. Not with a prescribed medicine. But with a challenge to examine the environment in my home, the food on my table, and the toxic load that Ellie has inherited from me. Overwhelming? Yes. But finally a place to start.

Off The Advised Path

Almost two months ago I made the decision that 'no answers' and 'try this' were no longer acceptable answers for my Ellie. 'She will outgrow it.....we some point....' was beyond frustrating, when coupled with an allergist who saw through my eyes when her patch testing showed an intolerance to corn. 'WHERE IS SHE GETTING CORN?' he firmly had asked in a very demanding tone. Where? Her formula. 'We need to get her off.' Yes, I know. But how exactly?

Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.

So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.

Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)

Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)

Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)

Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.

Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.

What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.

And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.

I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.

And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.

Tuesday, March 15, 2011

A Confirmed Diagnosis

Last week we received our first biopsy results for Elianna's procedure.

Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.

Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.

First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.

Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.

***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?

There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....

Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!

Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.

Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.

Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.

Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!

Our Hope: Where Ellie Stands With Food

At this point we have had good progress with Ellie and the bone broths and boiled meats. We have given her zucchini for three days (boiled, de-seeded and skinned for ease of digestion) and she seems to have tolerated it well. Next steps include boiled onion and carrot.

She is still not eating on her own, and will not let us feed her which means that she is getting it all via the bottle and Vitamix. She will not take a sippy cup or any lidded cup either. I am beginning to think that the referral for Occupational Therapy may be a good idea after all. She also has extremely low muscle tone. Hopefully I can find a state agency to help and support us with that since our insurance does not win awards for being the most helpful and we have already created bills in the thousands.

My hope is that we will be able to provide a stricter daily schedule that gets her into the highchair more regularly, and surrounded by a plastic tarp, since a 19 month old eating like a 6 month old is capable of spreading her damage in a much larger radius.

I will be doing a home patch testing for egg whites and egg yolks this week. I am very hopeful that she will pass, because this would be a fantastic source of nutrition for her.

She is growing, and has thinned down dramatically. But she looks healthy. Her hair is growing! Her constipation is gone. And boy is she hungry! She often eats 18 ounces in one sitting now, and that includes 6 or 7 ounces of meat puree! Exciting stuff.....except it keeps a pot of broth cooking on the stove almost every day. Oh well. You won't hear me complain about that!

Thursday, March 10, 2011

A List of Observations

Today is day 9 of taking Ellie off of the amino acid formula and putting her on bone broth and boiled meats only. Here are some observations based on physical conditions, as the cognitive improvement has already been huge.

Things that have disappeared:

  • night time cough and congestion
  • day time raspy breathing
  • nasal boogies and snot
  • massive ear drainage and constant ear wax
  • puffy, stretched skin
  • diaper rash
  • girl part rash
  • foggy head behavior
  • dark, under-eye circles
Things that have improved but have not completely gone away:
  • white tongue
  • full body eczema
  • rashed, red cheeks
  • spots on teeth (in grooves of molars)
Things we are now/still seeing or are more noticeable:
  • low muscle tone
  • stiff legged walking
  • desire to eat food
  • constipation
  • increase in tantrums
  • large range of volume - from whispers to screams, without much in between
I am sure there are other things that I have forgotten at the moment, but this is a good summary. We are VERY excited for the improvements!

Wednesday, March 9, 2011

To Jersey, Or Not To Jersey

Having no standard treatment protocols or relevant studies on FPIES here in the U.S. has caused some major heart ache for many moms. While many fight for answers, direction, or the insurance company to pay for an amino acid based formula so that their infant can thrive, other parents have been faced with accusations of Munchhausen by proxy when doctors can not make sense of things in their little box of western medicine. In response to this, two communities of moms have evolved - one on facebook, and one on baby center. Other groups have evolved, such as facebook's PIC page, and the FPIES United Family Fund. There is some over lap, but the baby center community has by far been larger and included more FPIES moms worldwide. I discovered these groups near the beginning of Ellie's journey and during the time of desperation that all FPIES moms seem to go through - is there anyone else out there or is is just MY child??

This community of (mostly) moms has helped me to answer questions, provided support when things look grim, and share experiences in an effort to find similarities that might make a springboard for treatment. Sometime back, right before the 'remove-the-formula-and-put-her-on-only-almond-milk' crisis for Elianna, one of those bold and very committed moms posted information about a doctor in New Jersey who was doing research on Tcells and immune system disease, primarily from the perspective of connecting it with autism. She had provided some amazing help for some moms already, and was currently conducting a study that FPIES children could participate in.

Excitement quickly erupted in this community of moms, and I caught the fever. Who is this doctor? What does she know? How is she helping? Should we travel? How do we get in? How do we qualify? Suddenly there appeared to be hope in a medical world that has previously only answered 'we don't really know' and 'there is not treatment for that'.

Jason brought me crashing back to reality when he reminded me that we don't have the money to get there, even if we could get an appointment. But I am confident that if we are meant to go, God will find a way, so I called. I called and left two voice mail messages, and then sent a lengthy email addressed to the doctor. Yet I heard nothing back. Other moms were making appointments, and the 'we got in!' and 'we got an appointment!' comments seemed to be everywhere except for our Ellie.

I stepped back and decided we would wait. The mom's that had appointments and lived closer promised to report back with more information and details on their experiences, so we waited. And the next thing I heard was that this doctor would see anyone in her private practice, and not turn anyone away who was willing to travel. This was great news!

As moms have begun to share their experiences, I have developed more questions than answers. There has been talk of immuno-suppressant drugs, blood tests, probiotics, anti-fungal medications, and amino acid formulas, just to highlight a few. The biggest fuzz in my head is connected to a large panel of blood tests that this doctor conducts to identified triggers and paint a more thorough picture of the condition of each individual immune system. Explanations and comments from other moms have included 'more to come', or 'waiting for the results to get answers', or 'hopefully we will know more soon', but this does not tell me what is being tested, or why. I don't even truly need to understand how it is done, but who does blood work without saying 'we are looking for such-and-such'? Without this piece, I will not truly know if it might be beneficial for us to travel there, so we wait.

What IS clear is that this doctor recognizes the need for individualized treatment, is brilliant, and has great understanding of protein intolerance and intestinal health. But she does not have all of the answers. And perhaps the key word is 'yet'. It is true that if money was not an issue, I would have boarded a plane long ago. But co-payments, specialists, compounded medications, and other expenses have already snatched up our spare pennies. At this point I can not justify packing up our bone broth and trekking across the country without hearing an inkling of hope. I have worked hard to find hope in the midst of no answers, and blood tests that simply say 'she is bad' or 'she can't eat' would not do anything for us. What am I missing? What questions could she answer for us at this point? I am not sure. So right now we wait.

Tuesday, March 8, 2011

And The Miracles Keep On Comin'

(Names have been abbreviated in this post because I did not receive prior permission to name them!)

Recap: Ellie has successfully had the bone broth and pureed, boiled meat of grass fed, organic lamb, beef, buffalo, venison, and pork. Chicken was not going to be available for some time, I had exhausted the resources of what is found in the supermarket and local farmer's markets, and buffalo and venison are outrageously expensive ($24.99 per pound??!) That left lamb, beef, and pork, and not a very large variety for her.

None of my leads for wild game had panned out, so I thought I would give it one more try and posted what I was looking for to our home school group. One of the moms (P.) sent me a note saying that her brother had a friend who was an avid hunter, and she would see about contacting him.

The next day or so P. passed the contact information on to me, saying that this 'hunter' would be expecting my call. Nice! The name was familiar - S. Moore (the same as someone we knew at the church plant I mentioned in the Vitamix post). I blew it off as probably just a common name, and what were the chances? I called and spoke with S. Moore, and explained how we were trying to avoid soy and corn. He said he would do some research and get back to me, and I was grateful!

A couple more days passed, and P. asked if I had been able to speak with S. Moore and had any luck. I said I had, and that I was waiting to hear what he had found out. Her response caught me off guard: they live in West Sacramento, and his son is also an avid hunter. Uh. Hmm. NO WAY. Really? Seriously? How many Moore families could there be in West Sacramento that fit this description? It WAS the family we knew, and who we had not seen in several years? GOD IS SO WEIRD! ha!

S. Moore's son, A. Moore, was a facebook friend of Ellie's daddy, so I jumped onto facebook and sent him a message:

HI A.!
God is sooo weird so I had to send you a note. I am Jason's wife.....not sure if you remember me. We used to go to Southport with you and your folks in WSac. Anyways I have a new friend that I met after moving to Elk Grove, who gave me the name of her friend who does hunting and might be able to help us out with some wild game that I have been trying to get my hands on for my daughter. (My daughter has a rare immune system condition) Anyways, she gives me that contact info for a S. Moore. I think to myself...that is bizarre but probably a common name. I called YOUR DAD and never put it together. Tonight my friend emails me and says 'did you get a hold of S.? Was he or is son able to help? They are avid hunters...they live in West Sacramento.' !!!! More than one S. Moore in WSac? I doubt it! SO hilarious! :)

His response:


Wow, yeah... small world. That's crazy, my dad was telling me and all of my hunting buddies about your daughter at a wedding over the weekend. I'd like to help..... see if we can get a network of folks to help you out.

As for what I can do for you right now, is provide you with some venison and waterfowl meat.

The next day S. Moore left me a voicemail (something to this effect):
Nichole! S. Moore here! I spoke with A. and can not believe it is you guys...we'll fix you guys up.

Amazing! Within days our freezer had duck, venison, and bear for Ellie. Two answered prayers in one shot - access to these meats, and donated as well. Nevermind the astonishing way that God is using friends from our past in combination with new friends in our lives right now.

Years ago, when we were actively involved in that community and church, we were able to donate a lot more time and energy to leadership activities than we are now. Many times we were tired and over extended. And once again, God does not guarantee we will see His ways or His plan. We are to trust, and keep trudging, in hopes of hearing 'well done good and faithful servant' at the end. But instead of expecting us to just plug forward, this most gracious God has allowed us the comfort of old friends when in need, and connection with new friends to reassure us of the move we made to Elk Grove during this most stressful time only 14 months ago. What word is there to use, except for amazing?

Sunday, March 6, 2011


I have been asked if I worry about ketosis in Elianna - a condition created from too much protein and not enough carbs (or something like that). I just discovered a response to this question by Dr. Natasha Campbell-McBride, author of GAPS, on her website. Dr. Natasha has an MD in neurology and an additional MD in nutrition. For more information please check her FAQ page. Here is her response:

Ketosis and GAPS. Is it induced via GAPS Introduction diet? Is it a danger in doing GAPS Intro? Is it one and the same as die-off? How to prevent it?

There is a popular myth that sugar is the main source of energy in the body; this myth has been created by commercial companies selling sugary foods and drinks, and by funded by them “research”. Mainstream nutritional institutions are funded by food industry, so they are the main propagators of this myth. Here is the truth: vast majority of all cells in the body use fats as a source of energy: your heart, your muscles, your inner organs, etc. Whenever fat is used as a source of energy ketone bodies are created. There is no need to fear ketosis, as we all have it now and then almost every day (it is very different from diabetic ketosis, induced by non-functioning pancreas). It is possible that during the Introduction diet there will be periods of ketosis, but don’t worry about it as normally you would not feel it at all. Eating vegetables will prevent ketosis. Ketosis is not the same as die-off.

Friday, March 4, 2011

How To Make Bone Broth

The difference between bone broth and meat broth, is that the bone broth needs to be cooked longer to extract the nutrients from the bones. While meat broth can be boiled for only a few hours, bone broth should be boiled for at least 12 hours (though I have boiled it for less in a pinch). Bones and marrow are richer in nutrients than just meat, and for Ellie I make sure and boil a piece of meat in with the bone broth to add more variety of nutrients and then have something to make puree (or pate') out of when it is done.

If you are not happy with the density of the broth when you are done, you can take off the lid and continue to cook it down until it is more condensed. The thicker, or denser in color, the better the broth. Also, if you are going to make bone broth with something other than a bird that will easily come apart, you need to make sure that the bones are not whole and the marrow is exposed. Adding pork skin or poultry skin into the broth will add additional nutrition.

It is abest to use grass-fed, organic meats and bones. If you use regular commercial meats you will be extracting the anti-biotic residue, chemicals, and other various things that will not be conducive to healing!

To make the broth:
Defrost the bones and meat. Place them in a large pot and cover with COLD water. Add a handful of coarsely chopped peppercorns. Peppercorns add other nutrients supposedly, but I don't know what those are!

Place the pot on the stove without a lid and bring to a boil. Skim the foamy funk off the top and discard. Do not remove the fat. Not now, and not at the end. The animal fat is super nutritious and good for you! (And once you add vegetables in to make a soup, it is much less noticeable.)

Add sea salt 'to taste'.

Reduce the pot to a low rolling simmer/boil, and put on the lid. Cook for as long as you can! (but not more than 24 hours)

When the broth has finished, it is easiest to strain it right away. If you let it cool then you have to deal with the solidifying fats and meats left in the pot. Use a fine mesh strainer and pour your broth through it. Discard the funk in the trash. Separate out the bones, and knock the marrow out on a cutting board if it has not cooked out into the broth already. It is a goopy gelatinous stuff that is not very appetizing in appearance. Don't let preconceived ideas turn you off to it's value!

At this point you can put the meat in the fridge to add to the broth later and make soup, or freeze it, or puree it, or combine the bone marrow and the meat together and blend it up. There are lots of options.

Use the broth as a warm drink, cold drink (?), use to make soup, or to cook with. Keep some in your freezer for help battling viruses and colds.

Our Special Order Chickens

After the borrowed Vitamix arrived, Ellie began chugging her bottles with liquid meat. I felt the long time burden of feeding my daughter begin to lift, and a relief that was unexplainable. The missing link at this point was providing a variety of meats to give her a variety of nutrients, and also finding a 'bird' to round out her needs. Ideally, we could go purchase a chicken and give her chicken soup, but finding a chicken that has not been fed soy or corn is literally impossible. I have been hunting for soy and corn free chickens and eggs for months. Chickens in North America have been fed commercial feed, and corn and soy for so long, that I couldn't even find a generation that knew otherwise.

You have probably heard someone say at some point that homemade chicken soup really does have healing properties to it. Well, it does! It is bone broth! You throw in a chicken, cook it up, and make soup. I find it almost humorous that we are OK with chicken bone broth, but think other animals are funky. Sometimes when I make these realizations I shake my head at myself. How goofy I have been!

Finally on craigslist I found a farm in the Apple Hill area that is raising chickens for meat, and selling them at farmer's markets. They were in their second year, and going to begin selling their organic chickens to a local restaurant as well. I emailed the business owner (Tom), and told him what I was looking for. To my amazement, he offered to look into raising chickens for slaughter for me, special order! Special order chickens. Who would have thought!

Tom is very knowledgeable, and did extensive research on my behalf to find a soy and corn free alternative to feeding the chickens, and also make it himself so that the per pound charge for these chickens is not outrageous. (Of course, 'my' soy and corn free chickens will be leaner and smaller than the 'other' chickens.)

Real Food Farms in Camino, CA will be beginning soy and corn free meat chickens this month. Please contact them ( if you are interested in purchasing chickens that are soy free, or both corn and soy free. They are competitively priced, and very impressive. I am unsure if they ship, but you can always ask. After all, look at the accommodations they have made for Ellie!

Thursday, March 3, 2011

My Little Carnivore

After 18 months, the bone broths have finally allowed me the small chance to do a little breathing and reflecting. What a wonderful feeling to 'come up for air', even if it is short lived! I am amazingly aware of the amount of answered prayers we have had, and people who have responded to our needs without asking for so much as a thank you in return. It has been a truly humbling experience for me, and continues to be. Not long ago I felt God reprimanding me and saying I needed to make our needs more transparent, so I started a running list of things we are researching and in need of. That was hard! But as a result we have been blessed even more, and the hardest part has been not feeling the incredible push to repay somehow.

Thank you to those of you who have gone out on a limb to offer buckets, and juicers, and peach trees. Those of you who have purchased Pampered Chef to help with my kitchen needs and who have made me aware of local resources and sent notes of encouragement. And thank you to those of you who have prayed.

Though we are never guaranteed when or how God will answer, He is faithful in His promises and He DOES answer. And though I am not certain what the future still holds for Ellie, or how big her safe food list will ever be, I am certain that we have entered a new stage. Is it a new stage of healing? Perhaps. Or is it just a new stage with mommy doing more letting go and letting God? Perhaps. What I do know is that my little carnivore is being taken care of, and there is nothing in the world that makes me happier.

Are not two sparrows sold for a penny? Yet not ONE of them will fall to the ground apart from the will of your Father. And even the hairs on your head are numbered! So do NOT be afraid; you are worth more than sparrows! Matthew 10:29-31

More Than A Building

We have now lived in Elk Grove for a little more than a year, and moving to a new community in the middle of these struggles has proven to very painful at times. Though we have prayed for a new church home, we have not had the ability to put much effort into the search as our Sunday's we can attend are irregular, the risks for Elianna are hindering, and changes in environment are hard on my 5 year old, just to name a few. But God has used this as a chance to remind me that the church is more than a building - it is a community of believers, meeting needs and looking out for each other.

There have been two particularly astonishing events that have made this hard to ignore. Both originate with a church plant that we were blessed to be a part of, yet it has been several years since we attended there.

One family that we spent a lot of time with (and miss terribly) now lives in Arizona. Many months ago Mr. Family-in-Arizona sent me the contact information for a friend they have there who has her own miraculous story of healing, and who feeds her family a gluten-free diet. She has been a fantastic resource and often helped me to figure things out when I have gotten 'stuck'.

I recently posted a survey on facebook about food processors versus blenders, and raving reviews for the Vitamix kept coming up. I needed to figure out a way to get pureed meat into Ellie, and due to her eating delays she was certainly not going to just pick up a hunk and chew. I tried adding it to her bottle after putting it through my Cuisinart, but it did not make it smooth enough and she refused it. Then came a message from my new facebook friend. She offered to ship me her Vitamix and loan it to me for a year while she was out of the country. Say what?!

My immediate response was - no way! What if it broke? And what about the cost of just shipping it to me? This was not your Walmart blender - this was several hundred dollars! I thanked her but declined.

In the meantime I realized I was stuck. I had to get food into Ellie other than the broth in order to get her off of the formula, but I could not figure out how to do it. Could we scrape together enough to buy a Vitamix and try it? Would it even do what I needed?

She messaged me back. Her Vitamix was under warranty, and it would be insured while in transit. And she wanted to cover the less than $20 it would take to ship it. Please pray about it.

*Smack* (That was God telling me to get over myself)

I accepted, amazed at the generosity from someone who has never met me or my child.

Within a few days it arrived, and I quickly whipped up a buffalo and pork smoothie for Ellie. She gladly slurped it down! This amazing gesture of kindness is feeding my Ellie, and has eliminated the stress of funding a Vitamix on our own during this already stressful time. I am humbled and reminded every time I use it, and can only hope that she is blessed even half of what we have been. I certainly know she is earning jewels for her heavenly crown!

Moving Forward

At this point I have been able to find and introduce the following bone broths into Elianna's diet: beef, lamb, pork, fish (salmon and trout) and buffalo. For a couple of weeks she had been eating bottles that consisted of broth and 2 scoops of Nutramigen AA. I attempted to puree up some of the meat to add back in with my Cuisinart blender but could not get it liquefied enough for her to take it without crying and raking at her tongue.

Respiratory symptoms and eczema got steadily worse, but I wanted to wait until after her procedure to remove the formula from her diet entirely. I wanted to be sure that her biopsies showed inflammation from the formula if that was the case, so we were in a short hold pattern.

After her procedure it was time to try getting her off the formula entirely. But to do that I had to add in additional nutrients with the boiled meats, or she would not be getting enough calories or nutrition. I wondered what to do. OK actually I panicked a bit. Amazingly, someone I have never met lent me her Vitamix and I was able to liquify some pork and buffalo to add to her broth. Within a couple days she was drinking 2 ounces of puree with 6 ounces of broth and 2 scoops of formula.

And the weaning began. We finally got her down to one scoop after a few days. I think it was purely a taste issue. And three days ago we took her off entirely.

As of right now, she is eating 8 to 16 ounces at a time, depending on the time of day. She eats every 1 to 2 hours, and that seems to becoming the case at night as well. She gets about 2-3 ounces of meat puree in each 8 ounce bottle of broth.

From the research I have done, she is missing very few nutrients on this diet, if any. And if we can continue to rotate through the types of meat she is eating, she will get even more! The low calorie content and the fact that it requires very little digestion is what keeps her eating so often. And it is extremely healing. Even has an article on how great bone broth is.

I do worry about what she may be missing, but as the nutritionist I spoke with this week said, we don't really have the luxury of worrying about that right now. We are moving forward. That is what counts. And it is more than we have ever had before.