Cherries on Top

It is hard to find blogs or resource websites that provide real food and GAPS information without any fluff.  Those of us in the trenches with severe situations get tired of wading through the waffling opinions and fence sitters who don't have to worry about a child having a life threatening reaction to the chemicals in a sticker.  A 'virtual' friend has a no-fluff website I truly appreciate, complete with a section titled 'Cherries On Top'.  This section caught my attention because it is exactly the situation we are in. 

Any autoimmune condition has a spectrum.  Food allergies and FPIES are no different.  GAPS heals the majority of those with autoimmune disease without additional supplementation.  Still....I know too well by now that when I hear 'majority', I can count Ellie into the 'minority'.  The emotions behind that, and the reasons I believe this to be true, are material for another post.  But as I hear great success stories from other moms in the GAPSkids forum, I am affirmed that Ellie's body is having trouble jump-starting her healing. 

The average person can plan to be on GAPS for at least 2 years, moving through the stages at an individual pace.  I have heard Dr. Cowan mention to plan on 32 months.  Dr. Natasha says a child before the age of 5 has the ability to heal quicker than an adult, and will have much more healing success on GAPS than an adult who has been sick for decades (my summary, not a direct quote). 

Ellie has been on the barely beginning stage for over a year now.  This is not typical.  Her inability to progress is complicated, but largely in part to her body's inability to detox naturally.  The body has an amazing detoxification system that takes care of many things on it's own. Environmental pollutants, occasional ingestion of toxic foods, ...you name it.  It binds it up and shoots it out via the colon (a little over simplified there).  Unfortunately it takes proper digestion and nutrition for all of that to work. 

One year later, Ellie is still not making sufficient bile, and not detoxing properly.  We have given her body a year of healing, and have now decided to give a few new things a shot.  They are not things we should have tried at the beginning, and I want to be sure that is clear for those on the GAPS journey.  Again: 80%+ do not need additional supplementation beyond GAPS protocols. 

So what's the plan? Well due to the recent probiotic drama, her body is having great trouble getting itself back under control.  We have stopped giving her coconut oil entirely.  She is back to her diet of broth, meat, zucchini, iodine paint, liver, fermented cabbage juice and GutPro.  Lots of detox baths are on the list as well.  And we are continuing two prescriptions we started shortly after our visit to see the doc- one is a liver enzyme, the other is a hard one to explain.  They are being delivered topically, and in a base that should be safe.  She has not appeared to have any reaction to the base but if her eczema refuses to clear after pulling coconut oil we will have to take a look at these medications next.  Because of the recent events we have no idea if they are helping yet.  They are both well studied medications for bowel disease, and our hope is that they will help move along the healing process.  Our intent is not for her to be on these medications for life.  (Due to that whole spectrum issue I no longer say things like 'long term', because that is relative. Everything for Ellie is long term.)  The medications are tools to help GAPS, if that makes sense?

Forward march, this time with the cherries on top.  Short term healing for a life time of eating.  Healing sounds so much better than a life time of the alternative.  Now to remember that 'short term' is relative to the spectrum.

Bright Side

Thank you for the well wishes and questions regarding Ellie's new developments (there have been a lot!).  At this time we have decided not to pursue testing regarding Ellie's seizures.  There are a few reasons for this.

The first is that initial testing would involve giving her an MRI and because of her age she would need to be put under anesthesia to keep her from moving.  I am not a fan of giving her anesthesia because of her last experience, or dealing with putting chemicals ('medications') into her blood if not 100% needed.  Also, the test may not show anything.

The second reason is that standard treatment protocol would be to put her on seizure medication.  This would be another thing I would like to avoid, and since she is not having them regularly it does not seem prudent to put her on medication 'just in case'.  We have only seen this one in the last 8+ months.

The last (and in my opinion the most important reason) is that we already have her on a medical diet designed to control seizures.  And it appears to be working.  I believe now that Ellie was having these seizures prior to starting GAPS at 18 months old, and shortly after stopped having them.  That is enough proof that they are controlled with her diet, and the recent events have given us information on how to watch and be aware.

I am also amazed once again at the human body.  There seem to be many types of seizures and causes (I am very much at the beginning stages of research and learning here), but one thing that I have learned is that a seizure occurs when the brain becomes irritated and an 'electrical storm' occurs. I have also learned that there are chemical and food induced seizures, which clearly seem to apply here.  The protein structure that holds together the intestinal cell wall for protection is very much the same as the protein structure that holds together the cells forming what we call the blood-brain barrier.  Things that cause damage to the gut wall, inevitably cause damage to the blood-brain barrier as well eliciting a neurological response to leaky gut (ie. Gut And Psychology Syndrome).  Proteins and toxins that are not supposed to be in the body at all can make their way into the brain, where it becomes 'irritated' and reacts. Amazing! If the foreign protein or toxin gets past the first line of defense, the body has a new alarm bell to let you know something is wrong. Seizures is one of those alarm bells.

Clearly I am not happy about this new development, and it will add  new dimension to every food trial we do from now on.  It illustrates further how sensitive Ellie's specific situation is, but the bright side once again is that her body is working properly and recognizing foreign funk. I will hang on to that!

Well, Shoot.

Today as I watched Ellie suck on a dried mango I was launched into a surreal moment.  I was breaking the rules by letting her have it, but truly I had no idea she would actually put it all the way in her mouth and try to eat it.  We have headed back to Occupational Therapy, and are taking a look at her major feeding delays and sensory issues.  She has begun to finally show signs of wanting to put food in her mouth and learn how to chew.  Today she surprised me by putting a dried mango quite into her mouth and following it up with a 'dat yummy good'. As I looked at the mango smears on her face and revved up for the coming confrontation of having to take it away, I had a flash back to what that would have meant one year ago.

A year ago it would have meant panic. It would have meant waiting and watching the clock and wondering if there would be vomit, or skin blistering diarrhea, or hives, or fluctuating blood pressure, or.....?  Today it meant 'oh crap, how much fungus is that feeding', and 'she is going to be crushed that I have to take that away'.  And she was.

She sobbed as I told her that was enough because it would hurt her belly, and screamed 'mine' repeatedly at the top of her lungs.  She let me hold her as she yelled in frustration to the point where I was certain the neighbors would call the police.  And then we moved on.

There will be consequences.  Regardless of what symptoms we may actually see, those minor slip ups are not minor at all when dealing with the extremes of Ellie's gut health.  But in one year's time she has had enough healing that the day ended different.  I am not gearing up for a long night in the over-sized green recliner holding a baby crying in pain, and cleaning up continuous vomit.  And for this I am thankful. 

A few steps backwards due to a dried mango certainly stinks.  But this time I have the opportunity to see evidence of healing, and be happy she is showing progress with self-feeding.  Works for me.  Makes all of that broth making a little easier.

Bring On The Chickens

We had this great story of how I put a post on craigslist and an amazing farmer up in the Apple Hill area responded, telling me he would switch all of his layer and his meat chickens over to soy and corn free feed. We chatted chicken and eggs and Weston A Price Foundation, and about the industrial push for feeding animals corn. He was super kind and gave us a great deal on 6 dozen eggs that I picked up from him each week. In fact his wife was a charter school teacher, like me.

And last week he disappeared. Sounds a bit dramatic? Well,.....he did. He was a no-show for our usual pick-up appointment, and he returned none of my emails, texts, or phone calls. I emailed his business email, checked his website for catastrophic events, prayed nothing bad had befallen him or his family, and then his cell phone was disconnected.

I can not even begin to say how BIZARRE this has been. I have contemplated driving to his house, but have felt that may not be the best choice. And the saddest of all was being forced to remove his farm from our list of corn and soy free resources. I looked forward to highlighting his farm and his kindness on my just-getting-started website, but now I have to remove his contact information entirely. That to me is truly sad.

We are rationing out the eggs we still have in the fridge while we search for a new source, but so far we have found nothing. I have even sought to have some shipped from out of state. As a result we are being pushed towards owning our own chickens much faster than we had anticipated. Ellie needs the egg yolk to help with her healing and complete her nutritional needs. We can not continue to rely on someone else.

We checked country regulations and we meet the lot size requirements by exactly 135 square feet, so we have begun our planning, and hopefully within the next week we will be moving forward. But not quickly enough to have eggs for our Ellie, I am afraid. What a sad world we live in. What a frightening place when even the farms do not know of an alternative for corn. This does not comfort me when I think of Ellie's future. It pushes me back towards the continued internal debate: pray and know God will provide, or get moving on providing what we know we need. This time the answer was given to us - so bring on the chickens.

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.

Food Aversion

Ellie has a food aversion. She doesn't take the spoon, she refuses to let us feed her, and she often does not put things in her mouth or swallow them at all. We have spent days reflecting on this, and have had doctors recognize her delays as being connected to her protein intolerance. We have discussed how she has learned this behavior because of pain. But today I wonder if that is the case.

Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.

She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?

Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.



I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.


She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.



Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!

Her First Antibiotics

We were making fantastic progress with Ellie on the bone broths and meats. Thanks to the many blessings of others we have been able to provide her with just about every bone broth imaginable. Each animal has a different diet and provides different nutrients. We often think of this when eating the staples fish, beef, or chicken. We don't often think of the other meats as offering even more.

Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.

We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.

At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.

I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.

Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.

Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.

The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.

And she got better. Zucchini back in, and moving forward again.

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:

HOPE

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.

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!

Sometimes She Falls Down

Over the last 18 months there have been many things that in retrospect look a lot clearer. Is that FPIES? Or is that just life? Or is that being a parent? There are a lot of things that I wish I had done, or not done, or just done differently, but the facts are always the same: I did the best that I can with the information I had. This is the story of life.

As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.

As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.

The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.

I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.

She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.

All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.

As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.

What Does She Eat??

Like other FPIES moms, I get this question all the time. If she doesn't eat food, then what does she eat? What do you mean she cant have FOOD? Doesn't she have to eat meat or eggs or nuts to get protein?

There is another FPIES mom who has been kind enough to humor my ignorant questions and help me through my 90 degree learning curve since our family has been forever changed by FPIES. This moms is a nutritionist- she does it professionally! And I will be forever grateful for her knowledge. In addition, her son who is a little older than Elianna, has walked a similar path with a severe intolerance to corn. His path and his mamas has been one of many mountains, and has caused much more long term damage, something we have been able to avoid so far with Elianna.

She just completed a blog post about what her son eats, and it answers a lot of questions that I get all of the time as well. Elianna's current diet has been tailored to her specific FPIES, but Sam has had the priviledge of having a mommy that has known the benefits of hemp and coconut long before I even knew they existed.

Please take the time to read this post of hers. It is a very similar situation to Ellie's, and will give more insight for those of you who are looking to make adjustments for your own FPIES child.

Day >>10<< of *REAL* Food!

Today was day 10 of real food for Ellie. Since I have spent every waking moment on the internet, on the phone, driving to various stores and markets, and in the kitchen cooking, it has gone by extremely fast. This is a good thing because if I had any more time to think about it I would have vomited from anxiety.

Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.

Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.

This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.

Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.

Let's Go Bone Broth, Let's Go!

Day one of beef broth trial went fantastic! She had it in her bottle with her almond milk, as well as separately like soup at the table. The best part? She loves it! No reflux symptoms, no visible FPIES reaction symptoms, and then we just had to wait for the poo to confirm.

Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!

Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.

Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.

We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!

**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!

Might As Well Say FPIES

For those unfamiliar with Dr. Natasha Campbell-McBride, here is a brief excerpt from her book that I believe should be marked as 'for the protein intolerance diagnosed in the United States'.

"People with food allergies and intolerances should go through the Intro Diet in order to heal and seal their gut lining. The reason for allergies and food intolerances is a so-called 'leaky gut' when the gut lining is damaged by abnormal micro flora. Foods do not get the chance to be digested properly before they get absorbed through this damaged wall and cause the immune system to react to them. Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days, or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if they had enough resources to test twice a day for two weeks, they would find that they are "allergic" to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever, removing different foods and never getting anywhere. From my clinical experience, it is best to concentrate on healing the gut wall with the Introduction Diet. Once the gut wall is healed, the foods will be digested properly before being absorbed, which will remove many food intolerances and allergies."

Reference: here


Dr. Campbell-McBride has been in practice with this philosophy of medicine since 1998.

At Ellie's last GI appointment, our fantastic and up-to-date doctor (he really is wonderful) told us there was some 'new' information coming out that speculated that a leaky gut caused additional proteins in to the body that caused reactions such as those of FPIES.

The Hand of God (a pause to give credit where credit is due)

That afternoon I was able to research and process what the yellow poop meant. There are three things that can cause it: bacteria infection, lack of stomach bile, or GERD (reflux). Elianna has already been tested for bacterial infections, obviously has GERD, and the lack of stomach bile hit a chord. Where had I read that? Leaky gut and lack of stomach bile...?

I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.

Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.

Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.

Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.

That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.

Ain't Nothin Urgent About Urgent Care

I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.

The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?

I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?

We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'

'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.

her: 'Oh. OK. Is she on any current medications?'

me: 'She is on albuteral in a nebulizer.'

her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'

me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'

her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'

me: 'Is her diagnosis even IN her file?'

her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'

me: AAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!

OK not really. That was only going on in my head.

her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'

me: 'what should it be?'

her: 'oh, 100.'

me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'

OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.

her: 'The doctor will be right in.'

And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.

Dr.: 'Sounds clear.'

Elianna: *cough. hack. gag*

Me: 'OK. So it is not a bacteria or a virus?'

Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'

me: 'so this is a side effect of her reflux?'

Dr.: 'I don't know. You should follow up with your primary care.'

And he exited.

Clearly I chose the wrong profession, because he got PAID for that!

Baseline, Beautiful Baseline!

The beginning of August we started Elianna on Nutramigen AA, the amino acid based formula in the category of what the pediatric nutritionist referred to as 'liquid gold'. Within 24 hours her stools changed entirely and within 3 days she was no longer vomiting for the first time in her life. We had seen such improvement with the first switch to formula that we had no idea we could see what is referred to as 'baseline'. We were excited beyond belief. We were happy. And it was great news to provide more answers to her puzzle. End of post :)

Hello FPIES, Goodbye Life As We Knew It

And so came and went the last week of July 2010. I spent this week moving between the stages of helplessness, frustration, and anger. I was grieving. After a couple of days reflecting on the appointment with the allergist, I was determined that my new life of advocating had begun and it was time to hit the internet for resources. I spent hours upon hours, late at night researching FPIES in hopes of determining if it was indeed the appropriate diagnosis and trying to understand what it meant. How in the world could an infant not eat protein? What exactly is food protein? The questions were limitless (and still are).

A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.

In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.

I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.

I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.

That Fateful Appointment

Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.

I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.

Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).

He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...

WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.

Something Still Not Quite Right

Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.

I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.

I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.

(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)

After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!

Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.