Let the Eating Begin

Sometimes it seems hard to update Ellie's progress, because "she get's 2 probiotic capsules instead of just 1" seems ridiculous to those who don't know her entire story.  In Ellie's life, these changes are huge and a sign of amazing progress. About 3 months ago we finally determined what remaining obstacles were keeping her from healing and now I can hardly believe her progress!

What were her obstacles?  Ellie had fluoride toxicity and chronic constipation.  We have worked hard to resolve both issues.  We believe her conventional mattress is still causing her problems and holding up some healing, and are saving up to replace it.

In the last 6-8 weeks Ellie has begun eating: broccoli, turnip, cabbage, egg yolk, and brussel sprouts. She drinks around 1 cup of fermented coconut water a day, has doubled her dosage of GutPro, and even enjoyed some homemade marshmallows.  Her eczema is almost gone, and she is resolving the pesky staph skin infections.  She has had lemon water and apple cider vinegar without incident, but declares it 'nasty' and does not drink it regularly.

Please note that she had an FPIES reaction to applesauce prior to starting GAPS, so I was very nervous about giving her apple cider vinegar.  She has also had no problem using various art products that gave her FPIES reactions previously.  We do limit her exposure to these chemicals still (as we would for any child), but are no longer fearful.  One example of this was a recent trip to the zoo with family friends.  While in the zoo cafe Ellie picked up and brought me a package of pink popcorn.  My sweet girlfriend freaked - WHAT! She touched popcorn! QUICK!... All while I had calmly said, 'Ellie please put that back'.  We laughed.  What a change from 2 years ago!

Ellie now has 5 vegetables she can safely eat, and averages 3 egg yolks per day.

What is next?

In the next few weeks we will be trying foods higher in starch that Ellie has not previously been able to tolerate.  If she is able to tolerate them, it will show that her disacharidase deficiency is healing.  On the list are onion, leek, spaghetti squash, cauliflower and carrots.  We will be starting fermented garlic.  Once I can find a goat, sheep or camel milk source, we will also be trialing ghee.

We are BEYOND ecstatic. The Lord is gracious and has been incredibly good.  My heart runs over with her signs of healing and continued hope!

No, Thanks.

With the change of medical groups Ellie became the proud recipient of 7 specialist referrals. I think. I lost count. Some good. Some ridiculous. And some a flat waste of time.

My personal favorite was the new neurologists referral for an autism evaluation.  Huh?  When I questioned her she explained that she felt Ellie needed to be evaluated for harbored anger and management of emotion. Oh, and she would not look the doctor in the eye when on the examining table alone.  Whatever.  It was obvious that she really wanted to help get her the intense feeding and sensory therapy that she needs, so we will jump through whatever hoops we need to.

Neurologist also wants an EEG. No harm, no foul is the motto. What could it hurt? It would be good just to see. Might show something, or might show nothing.  Afterwards we will determine if we should use medication.  *AHEM* No, thanks. For starters, Ellie's seizures have been controlled since starting GAPS.  Seizures are directly related to the immune system.  Standard treatment protocols for epilepsy includes gut-thrashing medication and hope for seizure control through the ketogenic diet.  Kids on keto have to be strictly monitored because keto does not meet all of their nutritional needs.  In addition, kids with an epilepsy diagnosis can have treatment mandated should the doctor deem it necessary, and then Child Protective Services become involved. (yes, seriously.)  An EEG may show seizure activity or it may not.  In fact, I found it interesting that the first neurologist had one way he wanted the EEG done and the new neurologist another.  At this point in time, there is no helpful reason to put Ellie through an EEG.  An official epilepsy diagnosis at this point in the journey would add nothing.  We are declining.

Another more obvious referral was to the allergist.  It makes sense to the pediatrician we would need one of those.  I didn't see the need quite as much, but agreed. I received a call from the allergist's office.  They informed me that they were unable to get the information they needed so they expected me to get copies of all her medical records showing office visits, tests, summaries, etc. and once received the doctor would evaluate if she authorized an appointment (or some other funky wording like that). No, thanks. We declined. Not to sound like a smarty pants, but I think we have a pretty good handle on what her allergies are.

Referral to the Pediatric GI was up next.  Good to know there is one of those around. I suppose at some point we should go meet him or her.  One thing Ellie needs investigating right now is the neurological function of her lower spine and how it relates to her ability to go poop.  There are lots of spinal complications (aside from Spina Bifida) that have potential to cause issue.  The Pediatric GI would be aware of that and would help with getting any tests done.  I had thought that would be the neurologist, (wouldnt that make sense - it is a neurological complication) but not so much.  They just care about her brain.

Finally is the referral to genetics. Oh yea. That one. The referral that the first neurologist was wondering why I had never received. How could a child with such complications have never received a genetic work up? Especially one with EGID (oh, did I mention that? She has a new diagnosis in her file. We are compiling them at this point like hotels in Monopoly.).  The EGID diagnosis is clinical, because I won't take her in for genetic testing or allow for another scope.  They looked at her eosinophils from when she was an infant, reviewed her tests for the first 18 months of her life, evaluated her current sensitivities, and said it is an EGID.  The first neurologist agreed that genetic testing was only if I was curious.  He is one of the top neurologists in the country, so I found that interesting - he knew all about EGID and seizures.

At this point there is no reason for us to head to genetics. In fact, it could be harmful to Ellie to have the genetically proven diagnosis of EGID in her medical file, because it is considered an illness for life. (Pre-existing condition anyone? The girl has already had a colonsocopy.)  Genetics will attempt to put Ellie in a box, where there is nothing but an excuse for her to be sick.  Mainstream medicine would love to find a genetic tie to all conditions from a cold to a heart attack, which does nothing other than rip away hope for healing.  The reality is that science is piling up for epi-genetics.  Epi-genetics is the concept that environmental factors determine which genes turn on and off, and acknowledges that there are many genes that never 'turn on'.  Over time some genes can even 'turn off'.  How's that for hope?  *insert thumbs up here*

By the way, at no time did anyone think we needed to see a nutritionist. Their examination of Ellie, review of her file, and who.knows.what.else was enough for them to believe she was getting her nutritional needs met.  Or not, and just figured an EGID was enough proof that she shouldn't be eating.  I found it amusing.  In fact when I finally said to the second neurologist that 1.5 years ago her allergy patch testing left a third degree burn on her back from corn, she said: "Oh wow. She is so severe. You really need to make that clear to everyone you come into contact with, all the time, multiple times, because we as doctors hear 'food allergy' all the time and it usually means something very minor."  Funny.

Boil, Blend, Repeat

Things around here are hard.  There is truly no coating that over with much, and certainly not anything sugary or filled with corn.  Everyday we boil, blend, and repeat. And repeat again.  In the middle we work, do laundry, try to feed the family, and look around at the things we don't have time to clean.  Then there is home school, the research, the doctors appointments, and....well, you get the picture.  The last thing I enjoy doing is adding another regular activity to the every day schedule.

Long before going GAPS I investigated the issue of disposable diapers.  Conversations about butt rashes, diaper creams, and diaper choices are common in the FPIES community.  How could it not be with so much revolving around poop? I too, participated in the investigation of which diapers had corn, which did Ellie seem to be ok with, and the reality that her uber sensitive self should probably be wearing cloth and not disposable.  But like mainstream thought, I had examined through the lens of 'what can we get away with' and not 'what we truly should be doing'. 

We switched Ellie over to cloth diapers and her skin improved.  I had no doubt that it was beneficial for her. But then came the laundry and the time involved.  It's work to keep cloth diapers clean, and to figure out how to keep a child who seems to pee 12 cups in one shot from peeing all over the house.  It wasn't just a matter of pee filled diapers, either. It was pee filled beds, and pee filled car seats, and an entirely new hurdle for even leaving the house.  Over time we became more lax, and back to disposables we went.  First it was just when leaving the house, and then it reversed to only using cloth at night to help contain the pee.  And I began to complain of the cost of disposables again. And the old way of thinking was back. 

"These disposables are probably not the best for her, but she seems ok....look how well she has healed that she can tolerate them....and she always did ok with Huggies...and the expense will be short lived once she is potty trained....and holy cow who wants to wash an FPIES poop off of those cloth diapers anyways??" 

The little beads that were left on her skin when I changed her diaper bothered me still, but they didnt leave a rash and any other diaper either had corn or caused a rash.  So onward we went.  Until recently.

Recently Ellie had a staph skin infection.  It was extremely heartbreaking to feed her the anti-biotic which I knew would be damaging her intestines and set us back on the healing journey.  She had never had staph before. In fact, all of our battle has been largely tied to fungus and those corkscrew little demons that can burrow right into the gut and leave gaping holes.  I had never stopped to consider other bacteria, such as staph or strep.

And then over twitter came a link to an article on disposable diapers.  I glanced through the article quickly, and assumed it would be like most of the other articles I read - discussing how landfills were full of them, and how our government was probably putting them in capsules and burying them in the ocean or some other environmentally damaging tragedy.  What I was shocked to find actually came near the bottom of the article and just happened to catch my skimming eyes.  Staph.  Staph. huh? STAPH!

Here is what I read:

One of the dangerous chemicals inside disposable diapers is called Sodium Polyacrylate. Even the “eco-friendly” diapers contain this chemical, too. This is the chemical added to the inner pad of a disposable that makes it super-absorbent. When the powder gets wet, it turns into a gel that:

• Can absorb up to 100 times its weight in water.
• Can stick to baby’s genitals, causing allergic reactions.
• Can cause severe skin irritations, oozing blood from perineum and scrotal tissues, fever, vomiting and staph infections in babies.

What in the.....

A quick google search confirmed.  This is another one of those 'common facts' that no one cares to share, or even thinks is important.  Dear Jesus, forgive me.  My eyes had been opened to risks so long before, and I couldn't deal with the thought of more laundry.  I was ashamed.

My 8^th grade teacher required the entire class to memorize a fantastic little quote. It has bounced through my mind repeatedly in the last few weeks.  Having been a professional educator now for more than 10 years, I feel confident in saying he would be pleased that I still have it tucked away in memory. While in junior high I had absolutely no idea what a little jewel this quote was.  I remember thinking it had everything to do with me not wanting to complete my homework, and this quote was meant to rub it in.  Now I see the incredibly important life lesson behind it.  Here it is:

"Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not." - Thomas Henry Huxley.

I was not exposed to the second part of this quote.  The entire quote by Mr. Huxley goes like this:

Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not.  It is the first lesson that ought to be learned and however early a man's training begins, it is probably the last lesson that he learns thoroughly.

Indeed.  The last lesson that he learns thoroughly.  And in my case, must learn repeatedly.

Ellie survived her round of compounded keflex, but her skin still struggles.  We have transitioned her back to cloth diapers and the laundry has begun to pile up.  I have no idea if we will see a significant change in her skin after this, but I can be comfortable knowing I am not giving her a staph infection (or cancer).  And I also do not find it coincidental that in conjunction with the anti-biotic, her pee amounts have decreased significantly (what was in her bladder?) and she has begun to sleep for longer stretches for the first time. 

Only God's grace would allow that.  In the end I may get more sleep!

It's a GAPS-iversary!

On the night of February 10, 2011, I held a dying child in my arms. 

Her weight had plummeted, she was dehydrated, and her elemental formula had failed her.  I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear. 

We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error

We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'

We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her

Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet.  Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby.  And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'.  Her body was tired and worn out from fighting.

We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time.  And on the night of February 10, 2011, I was certain she may not make it until morning.

Fear. I could never explain the fear.

I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.

The actual dates are muddy since email dates do not match blog post dates;  I certainly was not focused on taking notes.  I had already purchased the GAPS book and had skimmed it.  My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research.  I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask.  There are a lot of things I should have done....differently.  And a lot of things I did not understand.  But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.

It was hard work.  And it was petrifying.  

Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing.  Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.

Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear:  You can heal your daughter.

One year ago tomorrow, someone I had never met saved her life.

And I vowed I would not be quiet about it.

GAPS heals autoimmune disease. Period.  It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.

Need hope? 

Dallas, GAPS kids, and Community

November 10 I temporarily left my FPIES broth making duties at home, and headed to Dallas for the WAPF conference. I was thrilled at the idea of learning anything that I could bring back and share with other FPIES-GAPS mamas. I was especially anxious to get into a session with Dr. Natasha Campbell-McBride, and gather more information as it directly related to severe food allergy.

During Dr. Natasha's third session, she concluded with a Q & A portion. I sat and listened, and another mama came to the microphone. As she began I made a realization: there is an entire community of families out there walking the same path with a different diagnosis.

This mama was amazing. She shared a quick version of her daughter's story, and how she suffered from a rare epileptic condition that included a bleak prognosis. This mama had gone incredibly far outside of the box, and started her daughter on GAPS. The result - she was defying ALL odds, and getting BETTER. As this mom shared and then asked her question, she began to waver with emotion, fighting the urge to cry. Her daughter was seizing in the morning before waking up, perhaps due to hypoglycemia. As this mom choked out 'and I just keep thinking I am missing something...' I found myself tearing up as well. THIS mama wore the same shoes. She walked the same walk. She knew what it was like to make that brave leap and walk away from the comfort of the social norm. She asked the same questions.

And as Dr. Natasha answered her, I realized how the same questions and the same answers applied to FPIES.

If I saw her again, I would give her my card with information on GAPSkids, even though it did not visibly appear as a support system for her...yet. Dear Jesus. This mama must know she is not alone. And what amazing experience she could offer!

GAPS kids was originally designed for families of severe food allergies and feeding difficulties who are on the journey to healing with real food and GAPS. What I realized in Dallas is that this journey... of healing a child...outside of the box, regardless of the diagnosis,...is a petrifying and alone place to be.

If you are a parent navigating GAPS healing protocols and in need of a community, especially in the face of a severe or rare diagnosis, please consider joining us. GAPSkids forum

If you would like to hear more about Kennedy and her amazing path toward healing, and her very brave parents, watch here:

Prognosis

As we near Ellie's second birthday, all of those same questions keep coming up about her future, as well as some new ones. Since I have been asked them so many times, I can only guess there are others who are thinking them as well, so here are the answers.

Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)

No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.

If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.

Will she have this forever?

No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.

Why are you changing the whole family?

For two reasons:
First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!

Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.

Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.

What about after she is better/no longer reacts/is no longer severe?
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?

The Leap

We did it.

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

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

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

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

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

Wait....What happened to the fruit?

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

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

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

Reflections

I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.

I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.

For the sake of insight, and a glimpse into the beginning, here is a copy of this post:

Who Would Have Thought? June 21, 2010

Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.

We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.

Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.

The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.

The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).

What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).

I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!

I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.

Bloodwork

One positive thing came out of the $30 co-pay to the GI we won't be keeping, and that is the blood work. We have not had an entire round of blood work done on Ellie for several months, and now that we have completely started GAPS with her, I wanted to see what her vitamin levels looked like.

The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.

The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.

At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.

After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.

This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.

On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.

Stuck

Next up? Cauliflower. No enzymes for digestion required.

What resulted was one extremely bloated, belly distended, and uncomfortable Ellie. Was it the nystatin? Die off? Or the cauliflower?

Back to only zucchini for a few days and the belly lessened. Adding in the cauliflower brought the same result - her 'innie' became an 'outie' from its stretching. Poor baby!

Back to just zucchini.

Now what? Broccoli. No enzymes required for digestion, but a guarantee bloated belly. Let's skip that one.

Since she appeared to be stuck in the vegetable world, I decided to go back to the original instructions given which included trying fermented cod liver oil. It is an animal product so I figured we had a better chance at this than vegetables, and it would increase the vitamins she was getting.

Day 1: 1 drop of fermented cod liver oil in one morning bottle. Some night time fussiness.

Day 2: 1 drop of fermented cod liver oil in one morning bottle. And she stopped pooping, and started screaming. And screaming. All night. And the reflux, and the gas, ...and...and....and....a major FAIL.

The directions I received was to try one drop per day for 2-3 days to see if she could tolerate it. Clearly she could not.

I wanted to join in the screaming. We were stuck. Now what? Eggs? We now have soy and corn free eggs in the fridge, and two home patch tests have shown no reaction. I chickened out. No pun intended.

Instead I added yellow crookneck squash to her zucchini. And on day two she seems to be doing just fine. WHEW. So summer squash is where we stay. For now.

Patience mama. Patience. Baby steps. Don't forget the progress already made. Summer squash is a great place to be.

A Whole New World

Yesterday Ellie performed a most typical toddler task, getting her fingers into our sticker bucket. Here is a picture of what resulted:


For those of you who recognize it, yes it is the sheet of millions of teddy bear heads from Lakeshore. This is quite significant. Why? Because not long ago the corn in the sticker adhesive would have sent Ellie into a full blown FPIES reaction within a matter of minutes or hours. For the first time I did not have to panic. She had no reaction (though I did remove them all immediately).

This is a whole new world for us. This is a sign that her body is healing from the inside out, and confirmation that the formula was keeping her from progressing. And let's not forget the advance in fine motor skills she needed in order to pick each of those little bear heads off of the paper and place them on her leg.

In the last few weeks Ellie has colored with crayons, wrote on her body with markers, played with stickers, and even touched plain old playdough. All with no reaction.

She still has limitations (obviously), and we still must be diligent with what she is exposed to (Bandaids still give her a rash), but this is MOST noteworthy of progress and we are VERY pleased to see her little body begin to take care of itself. All from the inside out.

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.

Fearful Mommy: part 1

Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.

Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.

For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.

I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.

Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.

A MONTH.

That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?

What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?

I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?

The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.

I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.